It is winter and we are in the midst of the holiday season. A time for joy. A time for togetherness with loved ones. A time of giving and being gracious. So many pleasures wrapped up in just a few short months. Let's be honest though, the holiday season can be a very stressful time. This stress is often heightened for those of us dealing with chronic illnesses of any nature. I thought it would be important to talk about some ways to help lower the stress level throughout the season so that we may all enjoy the moments we share.
Since diabetes is such a prevalent disease in our nation and across the world right now I believe this is a good place to start. Stress affects Type I and Type II diabetics very differently and yet still has a great affect on the control of one's blood sugar levels. Both Type I's as well as Type II's are cautioned to keep stress levels low in an effort to maintain some sort of balance with blood sugar levels. I found a very useful link pertaining particularly to diabetics that is very useful http://www.diabetes.org/living-with-diabetes/complications/stress.html
Not only can the information on this sight be useful for diabetics, it has information that we can all use across the board.
For those of use with food restrictions such as Celiac Disease, Diabetes, or food allergies there are some quick easy ways to make your holiday season even brighter. Often times going outside of your own home to eat with diet restrictions is very difficult. Many hosts don't know of possible food allergies or diet restrictions of their guests. Plus, it is difficult for any host who is not accustomed to your specifications to try to accommodate. I have found for myself, because my digestive system is so sensitive and my symptoms can become debilitating quickly, it is easier for me to eat beforehand. That way I can casually sip a drink or just enjoy the company at the outing. Another thing I like to do is prepare a meal before, preferably an easy one or left overs, and pack them to go with me. I may get a few looks or a question or two, but I just politely answer with whatever information I am willing to divulge.
I have found that it is important to focus on the moment. Not only do I say this for the enjoyment of the moment, but also to prevent feeling overwhelmed. No one person around you is going to understand your perspective of the world or how difficult the holidays can be for someone with a chronic illness. Do not let their opinions or lack of knowledge influence how you take care of yourself while still being included in traditions. It is easy to get caught up in what is going on around you, and you should, but remember who is number one.
A routine is something health professionals as well as mental health professionals emphasize as a stress reducer. Throughout the holiday season a routine is nearly impossible to stick to, and yet with a chronic illness it is often important in the management of your disease. With travel and feasts and traditions this can be difficult. Do not beat yourself up over a few indulgences or strays from your daily routine. Do your best with what you have around you and be proud of your efforts.
Most important remember how badly you feel when managing your disease gets out of whack. Many diseases, in a state of stress, get exacerbated. When this happens and you don't feel like yourself, it leads to irritability, fatigue, and opens your body up to risks of complications from whatever you may be suffering. This, in itself, should be a motivator to keep you on track, let you loosen up enough to enjoy yourself, and that will allow you to not become overwhelmed.
This is a time of joy and excitement. This is a time to remember how grateful we are to have one another. This is not a time for our disease to control us. Just like a rope is woven with many strands, our disease is only one strand of the rope that makes us who we are- STRONG.
Tuesday, December 18, 2012
Friday, December 14, 2012
My Words On Connecticut Shooting
I had originally set out this week to make a post regarding Celiac Disease and its relation to diabetes, thyroid disease, neurological disorders, dermatological disorders, cancers, and other diseases. I certainly know for myself, it does seem that these are all closely linked. Unfortunately, in my research I have not found a whole lot of hard evidence that I could pull together and make sense of as would a medical professional. In working on researching this topic, I was nose-in to my lap top with my TV playing the morning news in the back ground. That's when I was punched in the stomach!
A mass shooting at an elementary school in Connecticut. WHAT?! An elementary school? I had to stop what I was doing to fully listen to what I thought I had just heard. Sadly, what I thought I heard was exactly what I heard. I just couldn't believe it. Suddenly, I was no longer able to focus or think of anything else. I even got up from my chair and began pacing back and forth while listening to the news reports as they rolled in, and at this point, as I write this, not all the details are known.
My first thought was that of my own son. Last week I was on my way to pick him up from school and I got an automated call from the school letting me know it was on lock down and they would not be releasing children. The message stated they had no further information at that time but would contact us as soon as they had more. I instinctively went to the school anyway to wait it out all the while thinking, "If there is something dangerous in the area causing a lock down, should I even subject myself to that danger?" Even with that thought my instincts forced me toward the school. My gut was telling me, "If my son is in danger, I don't care what could happen to me....I need to be there." While I was battling myself in my head, my auto-pilot had me in the parking lot before I knew it.
When I got to the school all the parents were outside waiting and trying to get information. I hear within minutes that a man with a gun was threatening to "shoot-up" a grocery store just down the street from the school. That was another blow because I had just kissed my husband goodbye from his lunch break. He headed off to work at the pharmacy at that same grocery store as I went to get my son. So, not only was my son in danger, I now knew that my husband was in danger as well. Luckily, in our small town it ended well. The gunman was caught and no harm was done to anyone in the store or along the way. The children were released quickly thereafter. Relief is an understatement to what I felt.
As I hear the stories rolling in about this shooting in Connecticut, I just cannot believe it! I cannot imagine what those parents are going through. I cannot imagine what those poor children have gone through let alone what they have seen at such a young age. My stomach just turns and turns and the anxiety for these people is just overwhelming me at this point. I am writing this because I am sure I am not the only person feeling these emotions.
It makes me think and wonder what is going on in the world today. Is it the mass media in addition to social media combining to give us immediate information of tragedies across the world that brings attention to all of this? Or is the world becoming a more evil and dangerous place? Or is this combination of the two, drawing the evil towards the attention they will receive? We cannot protect everyone all the time. We cannot predict the actions of free willed human beings who ultimately are animals. Am I growing up and just suddenly realizing the devastation that we cause each other?
There are so many questions. There are less answers. I am curious to hear other people's thoughts and opinions on this. How do we talk to our children about this? If it were to happen in our childrens' school, how would we help them deal with the aftermath and post traumatic stress? How do we, as adults, wrap our minds around this insanity and come to terms with this?
We have recovered from tragedies in the past. Columbine, Virginia Tech, 9/11, the wars in Iraq and Afghanistan just to name a few. This is an elementary school. It could have been our own children.
I am speechless and yet have a million questions. We all think we are immune.......yet we are reminded frequently that we are not. Cherish what you have, brush off the stressors, and treat others with respect. Behind every smile is a secret battle.
A mass shooting at an elementary school in Connecticut. WHAT?! An elementary school? I had to stop what I was doing to fully listen to what I thought I had just heard. Sadly, what I thought I heard was exactly what I heard. I just couldn't believe it. Suddenly, I was no longer able to focus or think of anything else. I even got up from my chair and began pacing back and forth while listening to the news reports as they rolled in, and at this point, as I write this, not all the details are known.
My first thought was that of my own son. Last week I was on my way to pick him up from school and I got an automated call from the school letting me know it was on lock down and they would not be releasing children. The message stated they had no further information at that time but would contact us as soon as they had more. I instinctively went to the school anyway to wait it out all the while thinking, "If there is something dangerous in the area causing a lock down, should I even subject myself to that danger?" Even with that thought my instincts forced me toward the school. My gut was telling me, "If my son is in danger, I don't care what could happen to me....I need to be there." While I was battling myself in my head, my auto-pilot had me in the parking lot before I knew it.
When I got to the school all the parents were outside waiting and trying to get information. I hear within minutes that a man with a gun was threatening to "shoot-up" a grocery store just down the street from the school. That was another blow because I had just kissed my husband goodbye from his lunch break. He headed off to work at the pharmacy at that same grocery store as I went to get my son. So, not only was my son in danger, I now knew that my husband was in danger as well. Luckily, in our small town it ended well. The gunman was caught and no harm was done to anyone in the store or along the way. The children were released quickly thereafter. Relief is an understatement to what I felt.
As I hear the stories rolling in about this shooting in Connecticut, I just cannot believe it! I cannot imagine what those parents are going through. I cannot imagine what those poor children have gone through let alone what they have seen at such a young age. My stomach just turns and turns and the anxiety for these people is just overwhelming me at this point. I am writing this because I am sure I am not the only person feeling these emotions.
It makes me think and wonder what is going on in the world today. Is it the mass media in addition to social media combining to give us immediate information of tragedies across the world that brings attention to all of this? Or is the world becoming a more evil and dangerous place? Or is this combination of the two, drawing the evil towards the attention they will receive? We cannot protect everyone all the time. We cannot predict the actions of free willed human beings who ultimately are animals. Am I growing up and just suddenly realizing the devastation that we cause each other?
There are so many questions. There are less answers. I am curious to hear other people's thoughts and opinions on this. How do we talk to our children about this? If it were to happen in our childrens' school, how would we help them deal with the aftermath and post traumatic stress? How do we, as adults, wrap our minds around this insanity and come to terms with this?
We have recovered from tragedies in the past. Columbine, Virginia Tech, 9/11, the wars in Iraq and Afghanistan just to name a few. This is an elementary school. It could have been our own children.
I am speechless and yet have a million questions. We all think we are immune.......yet we are reminded frequently that we are not. Cherish what you have, brush off the stressors, and treat others with respect. Behind every smile is a secret battle.
Tuesday, December 11, 2012
Technical Difficulties
As if life in general weren't complicated enough. I have to admit that I am not too tech savvy. I was one of the later of my generation to join MySpace just before Facebook became the big thing. I was then reluctantly talked into joining Facebook. All the while, I had a laptop and a cell phone. Let me notate that both were very basic models, as I do very basic things tech-wise.
I got into MySpace and then into Facebook. They are very addicting. As Facebook took over the world and MySpace faded away, I was sucked in even more. Especially just becoming disabled and suddenly having minimal connection to the outside world, this gave me a way to feel connected to all the people I was distanced from by my new situation. Not only that, I was able to connect with old friends I had lost contact with as well as family members who lived out of town. That was a highlight for me because at the time my son was very young and I felt it was my obligation to keep my family updated on him. I liked being able to post pictures and status updates to the masses rather than singularly text message or picture message my family or friends. Let me be clear, my page has and will always be private, strictly for family and friends.
Remember I said I had a cell phone this whole time. The problem was that I had a basic cell phone. I have had a cell phone since I was in college, granted that journey began over 10 years ago. That was when texting became the big thing. I am a texter. Smart phones came out, but I never had the money to afford one. By the time my son was born, I was getting mocked a bit because I would send picture messages around. My basic little cell phone took pictures and could send them, but when those who had smart phones would receive them they would be tiny little, sometimes unremarkable, pictures. I got mocked. Eventually, someone bought me a digital camera. Full circle, Facebook allowed me to use my camera to send these pictures. All the while, I held on to my basic cell phone.
I cannot explain my resistance to technology other than it overwhelmed me. More recently I am starting to gain ammunition as to why I do not want to embrace further technology. Although, I see its importance in medicine, I do not see the importance to constantly add more "conveniences" to our lives considering we are all overwhelmed by multi-tasking. Add that to the growing obesity rates and I'd say some of these "conveniences" are more detrimental than helpful. Scratch that, I should say the user of the convenience has the control to use it wisely, but the vast majority are falling prey to the evils. It is human nature to follow the crowd. Hindsight is 20/20.
So much has happened with my health, our family, our nation, etc. in the past several months. For myself personally, some relationships have been seriously damaged if not ruined, by the evils we do not always see in technology. Now that I have not only watched marriages end, friendships end, family drama being stirred up.....the list goes on, I am just astonished by the fact that so many of us have not backed away to repair the damage. I myself have had my share of troubles.
Last spring I lost a friend over several months of Facebook posts that were misunderstood. We obviously did not communicate well so the misunderstandings turned into hurt feelings and anger ensued ultimately ending the relationship. I blamed that on my friend that I had just lost, sure it was her and not me who let Facebook come between us.
Just last week I commented on a post I apparently misunderstood and offended a family member. That family member's comment in turn offended me. My solution to that was to end the communication for that conversation on Facebook and actually get a hold of my family member to make sure this person knew I really cared. Honestly, I should have called her directly. But rather than make a big deal out of a simple Facebook post, I texted unrelated conversation in an uplifting manner and made sure I let the my family member know how important they are to me. I have to admit, I am a little shy and my thoughts and emotions come out much better in writing than in talk. My go-to for any problem as long as I can remember is to write it out. A little more than a decade ago, a hand written note was acceptable. Even with that, it can be misinterpreted.
Finally, last night I fell prey to the very thing I misunderstood about my family member's post a few days before. I finally got a smart phone a few weeks back. I discovered the Facebook app. I should have seen it coming. Facebook sucked me back in and the next thing I know, I am commenting and status updating left and right. Yesterday I was taking my son to Tae Kwon Do and listening to a song that has brought me a lot of peace this past month. The line that gets me every time came on at a stoplight which gave me the opportunity to quickly post it as my status update. Problem being, I did not use quotation marks or sight the song writer. Within hours, I had an influx of phone calls, text messages, and emails asking if I was "OK". Apparently, the way I had posted that particular update made it look as if I wanted to end my life. Damage control continued for an hour or so and I finally updated my Facebook page with more information to end the confusion.
I should have vocalized this thought several months ago when it first occurred to me. I have stated I am not the best with vocalizing. I should have, if nothing else, written a blog about it then to get it out. Instead, I kept my little epiphany to myself and landed in the position I was in last week and last night. Technology and it's conveniences are meant to be enhancements to our lives. Social media, email, and texting should enhance an already stable relationship not replace it.
I am much better at writing than talking. I can express myself much more freely in writing. I am definitely much more articulate in writing. Writing is like a thought. No one else can hear it. The difference is, a thought is kept inside the mind whereas writing can be displayed. In the display it is impossible to completely set the emotional tone of the words. Anyone who knows the writer well may be able to "hear" the writer speak the words as they read the writing. It is those fragile relationships, maybe new or distant or from the past, that fall victim to the tragedy that is misunderstanding and lack of real communication.
Little ol' me in lil ol' small town USA is calling the masses to open their eyes to the devastation lack of communication causes. I heard once to be kind to everyone because behind that smile is a battle. Everyone of us, whether it be illness, finances, divorce, what-have-you is going through a great struggle. Some of us are hanging by a thread. The lack of communication adding to the misunderstandings and overthinking that comes with social media and technology can break that thread in an instant. It is so hard to "communicate" what we are really trying to say in 160 characters on a screen. Don't take the ones you love for granted. Let's enjoy these conveniences by enjoying how they enhance our lives before we all become hermits tapping away at a keyboard or touchscreen all alone.
I got into MySpace and then into Facebook. They are very addicting. As Facebook took over the world and MySpace faded away, I was sucked in even more. Especially just becoming disabled and suddenly having minimal connection to the outside world, this gave me a way to feel connected to all the people I was distanced from by my new situation. Not only that, I was able to connect with old friends I had lost contact with as well as family members who lived out of town. That was a highlight for me because at the time my son was very young and I felt it was my obligation to keep my family updated on him. I liked being able to post pictures and status updates to the masses rather than singularly text message or picture message my family or friends. Let me be clear, my page has and will always be private, strictly for family and friends.
Remember I said I had a cell phone this whole time. The problem was that I had a basic cell phone. I have had a cell phone since I was in college, granted that journey began over 10 years ago. That was when texting became the big thing. I am a texter. Smart phones came out, but I never had the money to afford one. By the time my son was born, I was getting mocked a bit because I would send picture messages around. My basic little cell phone took pictures and could send them, but when those who had smart phones would receive them they would be tiny little, sometimes unremarkable, pictures. I got mocked. Eventually, someone bought me a digital camera. Full circle, Facebook allowed me to use my camera to send these pictures. All the while, I held on to my basic cell phone.
I cannot explain my resistance to technology other than it overwhelmed me. More recently I am starting to gain ammunition as to why I do not want to embrace further technology. Although, I see its importance in medicine, I do not see the importance to constantly add more "conveniences" to our lives considering we are all overwhelmed by multi-tasking. Add that to the growing obesity rates and I'd say some of these "conveniences" are more detrimental than helpful. Scratch that, I should say the user of the convenience has the control to use it wisely, but the vast majority are falling prey to the evils. It is human nature to follow the crowd. Hindsight is 20/20.
So much has happened with my health, our family, our nation, etc. in the past several months. For myself personally, some relationships have been seriously damaged if not ruined, by the evils we do not always see in technology. Now that I have not only watched marriages end, friendships end, family drama being stirred up.....the list goes on, I am just astonished by the fact that so many of us have not backed away to repair the damage. I myself have had my share of troubles.
Last spring I lost a friend over several months of Facebook posts that were misunderstood. We obviously did not communicate well so the misunderstandings turned into hurt feelings and anger ensued ultimately ending the relationship. I blamed that on my friend that I had just lost, sure it was her and not me who let Facebook come between us.
Just last week I commented on a post I apparently misunderstood and offended a family member. That family member's comment in turn offended me. My solution to that was to end the communication for that conversation on Facebook and actually get a hold of my family member to make sure this person knew I really cared. Honestly, I should have called her directly. But rather than make a big deal out of a simple Facebook post, I texted unrelated conversation in an uplifting manner and made sure I let the my family member know how important they are to me. I have to admit, I am a little shy and my thoughts and emotions come out much better in writing than in talk. My go-to for any problem as long as I can remember is to write it out. A little more than a decade ago, a hand written note was acceptable. Even with that, it can be misinterpreted.
Finally, last night I fell prey to the very thing I misunderstood about my family member's post a few days before. I finally got a smart phone a few weeks back. I discovered the Facebook app. I should have seen it coming. Facebook sucked me back in and the next thing I know, I am commenting and status updating left and right. Yesterday I was taking my son to Tae Kwon Do and listening to a song that has brought me a lot of peace this past month. The line that gets me every time came on at a stoplight which gave me the opportunity to quickly post it as my status update. Problem being, I did not use quotation marks or sight the song writer. Within hours, I had an influx of phone calls, text messages, and emails asking if I was "OK". Apparently, the way I had posted that particular update made it look as if I wanted to end my life. Damage control continued for an hour or so and I finally updated my Facebook page with more information to end the confusion.
I should have vocalized this thought several months ago when it first occurred to me. I have stated I am not the best with vocalizing. I should have, if nothing else, written a blog about it then to get it out. Instead, I kept my little epiphany to myself and landed in the position I was in last week and last night. Technology and it's conveniences are meant to be enhancements to our lives. Social media, email, and texting should enhance an already stable relationship not replace it.
I am much better at writing than talking. I can express myself much more freely in writing. I am definitely much more articulate in writing. Writing is like a thought. No one else can hear it. The difference is, a thought is kept inside the mind whereas writing can be displayed. In the display it is impossible to completely set the emotional tone of the words. Anyone who knows the writer well may be able to "hear" the writer speak the words as they read the writing. It is those fragile relationships, maybe new or distant or from the past, that fall victim to the tragedy that is misunderstanding and lack of real communication.
Little ol' me in lil ol' small town USA is calling the masses to open their eyes to the devastation lack of communication causes. I heard once to be kind to everyone because behind that smile is a battle. Everyone of us, whether it be illness, finances, divorce, what-have-you is going through a great struggle. Some of us are hanging by a thread. The lack of communication adding to the misunderstandings and overthinking that comes with social media and technology can break that thread in an instant. It is so hard to "communicate" what we are really trying to say in 160 characters on a screen. Don't take the ones you love for granted. Let's enjoy these conveniences by enjoying how they enhance our lives before we all become hermits tapping away at a keyboard or touchscreen all alone.
Monday, November 12, 2012
Refreshing Truth
Today I had to take my truck into a body shop for an estimate. I live in the same town I went to high school in so the gentleman running the shop was my neighbor as a kid. He and I have crossed paths a few times these last few years. I knew he took over his dad's shop, but I haven't stayed in close contact with him.
As he was going about the business of getting my estimate done, paperwork filled out and filed, and whatever else they need to get done when it comes to insurance claims he asked, "So what have you been up to these past few years?"
This is a dreaded question for me. I hate answering it. I can always say, "I am a stay at home mom." That is an incredibly hard job that is definitely a necessity in my mind. But I only have one child who is in school so I have at least 6 hours out of the day I feel people think I should be out working. Many women in this area have several children so staying at home with them in a no-brainer, but this day and age- one child doesn't seem to constitute a need to stay home.
After spending the beginning of this month with family for the loss of a loved one my mind set changed a bit. I was around family, granted many of them I hadn't seen in years. They are all aware of my situation on some level, knowing that I have some chronic illnesses. As hugs and greetings or goodbyes were exchanged I'd get the whispers in my ear, "Good to see you. You are so tiny." "Glad you made the trip, but you look good." "Oh you tiny, little thing. I am so glad you could get here." I know they all love me and I knew they were glad to see me because I have had to miss so many family events in the last few years. In talking to my husband though, because we deal with this daily, we joked about how that was a polite way of them telling me I wasn't looking too great or at least not as good as the last time they saw me. That wasn't what changed my mindset though.
I was comfortable with them. I felt the love all around me. I felt comfortable avoiding the food or other contaminate that may threaten me. I felt comfortable not putting on makeup to prevent my face from getting a rash. I felt comfortable needing to sneak away for some medicine. I felt comfortable being allowed to me. The me that I have always been, but also the new me with all that is attached. I embraced myself a little more.
So, today with this old friend asking what I have been up to, I did say "Staying home with this guy" as I pointed to my son (he is off for Veteran's Day). My old friend gave me a smirk, then I said "I actually got sick not too long after high school. A rare immune problem. This guy is my little miracle, and he keeps me plenty busy."
With that, I received a beaming smile from my old friend. He said, "I've been wondering when I see you around. That must be why you're so skinny. I'm really sorry." At that, we laughed and joked about how I'd love to enjoy some more scrumptious food. He the said, "You look great, then." And we finished out our business for the day. With a "Thank you" and a "Good to see you" my son and I left to go about our day.
I cannot tell you how refreshing that interaction was for me. We all see people day in and day out we may know closely, as an acquaintance, or a stranger. We all exchange small talk and mutual etiquette, but I assume most of us leave these interactions not knowing truly what was between the lines. With so many insecurities about my health and my appearance, it was nice just to hear the truth. It was nice to be accepted, heard, and told an honest truth.
Sometimes when we are trying to spare the feelings of others we make the mistake of putting our foot in our mouths. You never know how things will be received on the other end or perceived for that matter. Thinking about your responses first, especially too much, usually ends badly. Go with your gut. Be kind to everyone you meet. But, first and foremost, be honest and genuine with what you say. I promise that will be received much better, and the perception will most likely be that of what you intended.
As he was going about the business of getting my estimate done, paperwork filled out and filed, and whatever else they need to get done when it comes to insurance claims he asked, "So what have you been up to these past few years?"
This is a dreaded question for me. I hate answering it. I can always say, "I am a stay at home mom." That is an incredibly hard job that is definitely a necessity in my mind. But I only have one child who is in school so I have at least 6 hours out of the day I feel people think I should be out working. Many women in this area have several children so staying at home with them in a no-brainer, but this day and age- one child doesn't seem to constitute a need to stay home.
After spending the beginning of this month with family for the loss of a loved one my mind set changed a bit. I was around family, granted many of them I hadn't seen in years. They are all aware of my situation on some level, knowing that I have some chronic illnesses. As hugs and greetings or goodbyes were exchanged I'd get the whispers in my ear, "Good to see you. You are so tiny." "Glad you made the trip, but you look good." "Oh you tiny, little thing. I am so glad you could get here." I know they all love me and I knew they were glad to see me because I have had to miss so many family events in the last few years. In talking to my husband though, because we deal with this daily, we joked about how that was a polite way of them telling me I wasn't looking too great or at least not as good as the last time they saw me. That wasn't what changed my mindset though.
I was comfortable with them. I felt the love all around me. I felt comfortable avoiding the food or other contaminate that may threaten me. I felt comfortable not putting on makeup to prevent my face from getting a rash. I felt comfortable needing to sneak away for some medicine. I felt comfortable being allowed to me. The me that I have always been, but also the new me with all that is attached. I embraced myself a little more.
So, today with this old friend asking what I have been up to, I did say "Staying home with this guy" as I pointed to my son (he is off for Veteran's Day). My old friend gave me a smirk, then I said "I actually got sick not too long after high school. A rare immune problem. This guy is my little miracle, and he keeps me plenty busy."
With that, I received a beaming smile from my old friend. He said, "I've been wondering when I see you around. That must be why you're so skinny. I'm really sorry." At that, we laughed and joked about how I'd love to enjoy some more scrumptious food. He the said, "You look great, then." And we finished out our business for the day. With a "Thank you" and a "Good to see you" my son and I left to go about our day.
I cannot tell you how refreshing that interaction was for me. We all see people day in and day out we may know closely, as an acquaintance, or a stranger. We all exchange small talk and mutual etiquette, but I assume most of us leave these interactions not knowing truly what was between the lines. With so many insecurities about my health and my appearance, it was nice just to hear the truth. It was nice to be accepted, heard, and told an honest truth.
Sometimes when we are trying to spare the feelings of others we make the mistake of putting our foot in our mouths. You never know how things will be received on the other end or perceived for that matter. Thinking about your responses first, especially too much, usually ends badly. Go with your gut. Be kind to everyone you meet. But, first and foremost, be honest and genuine with what you say. I promise that will be received much better, and the perception will most likely be that of what you intended.
Tuesday, October 30, 2012
Unthinkable
Words cannot even begin to describe how I feel right now. Life is beautiful. The human body is miraculous in its ability to keep even the most minute pieces of a puzzle in place to sustain life. Within that, humans are given a brain and cognition that all combine to create a person. A person with a spirit, mind, body, personality, and light. But, this miracle is fragile.
Today an integral part of our family was taken home to be with the Lord. He was my uncle. He was the third of six siblings in a rambunctious family born in the fifties. In a big way, he was the glue that held us all together when life takes its toll and slowly takes away the foundation.
The siblings began having children in the seventies and eighties. This only enlarged the family. Throughout is all they stayed close, always returning home. As the world goes, with such a large family, we began to lose members slowly throughout the years; whether it be to illness, tragedy, accident, what-have-you. The young, the old. None of us were immune. He was always there.
He lived a good life and made a huge impression on anyone he met. I currently live in my family's hometown and nearly on a daily basis I get asked about him specifically because he is so memorable. He was loud, outgoing, fearless, carefree, and an amazing athlete.....not to mention a bit of a charmer. He dealt with his own set of trials throughout.
As a young adult he married a wonderful woman. They had a beautiful daughter that was the center of their world. Unfortunately, he lost his love to cancer. As a young child, watching him with my cousin, I always thought how difficult it must have been to go through something so awful. My heart just prayed they would one day find peace in it all. Even though I was so young and not much was shared with me, my heart always wished the two of them hadn't gone through losing a mom and a wife. But, he loved his daughter and faced the world head on.
Part of the humor I find in my memories of my uncle was this stream of woman years after the loss of his wife. He always had a trophy by his side. It never surprised me because people adored him. As did all us cousins (minus the romance of course). Everyone wanted to be around him. One visit in particular that sticks out in my mind, we went to pick him up at the airport for some family gathering. I was very young, still in elementary school, but I had a clear understanding of how charming and full of life my uncle was. The trip to the airport was about 2 to 3 hours and I was excited the whole way. When we got there, my uncle had in tow a beautiful blond woman with a matching track outfit on. You know, the one's from the early nineties that were plastic with loud colors. (When I told her this story, she tells me it was his idea for the matching outfits....and that is just like him) My first thought was, "Here we go again." That trip back from the airport, I quickly realized I really liked this woman. I could also see my uncle saw her differently as well. Soon after that, she became his wife.
I remember being so happy that my uncle had found love again and that my cousin would have a mother figure around. Nothing can replace your mother, but growing up with only a man to turn to for advice must be difficult no matter how much love there is. My new aunt, who never seemed "new" to me, had three kids of her own. They happened to be around my age, which only heightened my excitement because I was the youngest cousin at the time and always felt left out. My uncle and my aunt blended this family together with their amazing love. I'm not trying to paint this pretty picture of butterflies and roses. All families have their own set of obstacles, but the love was undeniable between parents and children.
Our family has always been so large and continued to grow as the grandchildren began having kids. Throughout it all we all stayed as close as possible living only one or two states away from each other, we all returned home for family gatherings. As the years past, as they always do, my grandparents were taken from us and my uncle lost a sibling. In all of it, he had his own struggles with a blended family, teenage daughters, life......he always stayed positive. He always found joy or humor in everything. He always pushed through with a determination as if the worst case scenario wasn't even a factor. That was something that drew so many of us to him. That combined with his love.
He loved his family with everything he had in him. A mother, a father, a daughter, a wife, three additional children, brothers, a sister, nieces, nephews, soon a grandson, add in two son in laws, granddaughters to follow and not to mention the countless lifelong friends, coworkers, colleagues, acquaintances, etc. This man loved us all and we all knew how deep the love went.
About six years ago (don't quote me), I got a call from my parents giving me the news that my uncle had cancer. Forgive me now, it has all been overwhelming, so I cannot recall the specific type of cancer. I was devastated. My uncle was always the picture of health to me, but not only that, his spirit was so big, it just didn't seem possible. At the time, I worked as a medical assistant. I took the information to the doctor I worked for and asked him to explain it to me. He was reluctant, but I kept pushing. Finally, he took me to his office and got on his computer. He also pulled out some books. He went over all the information of this type of cancer with me, and it floored me. When my parents told me, things were so new, we were not sure we had all the right information. I went into denial. I figured everything the doctor I worked for had gone over with me was useless information. It was scary and there was no way my uncle, who was so vital and vibrant, could be suffering from that.
Not too long after that, I started getting calls from my uncle urging me to get help for my ailments. I had been dealing with symptoms and frightening episodes for a couple years and he wanted me to get treated or at least evaluated. I argued with him all the time. I was too young. I was working too hard. I was a new mom. He was being overbearing and making a big deal out of nothing. One day, as I was driving to work, my uncle's doctor called me. Imagine the look on my face and thoughts going through my head. The gentleman spoke with me in detail about my diabetes and the symptoms I was having. He recommended disability. He urged me to look at the whole picture because it was more serious than I was treating it. He even offered to help in any way if I decided I wasn't going to push back anymore. I thought about it for a few days, and the whole time I was amazed that my uncle was going through testing and who knows what else for a form of cancer and he was worried about little ol' me.
Of course, after some time and continued urging, I followed my uncle's advice. As soon as I did, he jumped on board. He gathered anyone he knew who could help to get me, my husband, and son in a situation for me to start getting better. These past four years with diagnosis after diagnosis for me, he has been there every step of the way. Sometimes, even living 8 hours away, popping up at my door just to check on me while he was in town. All this time, he was dealing with his diagnosis and all that it entailed. Never once did he complain or show any signs of weakness.
I remember many nights crying to my husband in fear that we would lose him. I didn't understand the diagnosis they had given my uncle. As you can tell, with me giving no details, I still don't understand it in totality. Which is so not like me. I am an information junkie, and I feel that information gives you power. If I cannot fix something, I will learn about it until I find a way. Something about my uncle being ill and it being so fragile was so overwhelming, I believe I was in denial because not a single piece of useful information stuck in my brain. I just knew he was very ill and I was terribly worried, but he was my uncle, the rock, nothing would take him.
When treatments started getting more intense, I would call to let him know I was thinking about him. I also wanted details. I wanted to know he was going to be alright. He would never allow the conversation to be focused on him. I would call and ask if he was OK. His answer was always, "I'm doing great, darlin'. How are you?" I'd try the same trick and push again for him to lean on me, but he wouldn't take it. He was concerned with me. He would give me advice and tell me what doctors to call or what he thought I should do for my own health and well being. He always asked about my son and my husband. Then, we would leave the conversation with an "I love you."
That did the job. He would calm my nerves enough. My denial would only solidify with his upbeat, positive, and lively personality. I know my illnesses changed me a lot so I began to assume that if he wasn't affected by this illness, I shouldn't be scared for him. The fear was always in the back of my mind, but I would always tell myself that the cycle of life takes us all. I never believed this would take my uncle.
He raised his daughter. That in itself is an honor many men take for granted or completely disregard. He loved with everything he had. He found his perfect match in life. He helped raise her kids as his own. All the dysfunction, trials, and tribulations never broke him or backed him away from loving his family. He helped raise his grandson who worships him. He has taken care of those around him in any way he can find. He has seen his share of heartache, and yet none of it ever broke his spirit. I attribute that to his amazing personality, but also to my aunt who stood by his side. She matches him perfectly. The joy and heartwarming feelings I get when I think of my uncle, I get the same feelings thinking of my aunt.
She did not have to join this crazy family. She did not have to put up with all of our antics. She did not have to take us all in with an open heart. She did. From day one, many moons ago, she has been someone I look up to. She is gorgeous. She is smart. She is just as charming and crazy as my uncle. She is loving and caring and so giving. She has been through some major tragedy these past few years. I believe she is glad to see my uncle's suffering come to an end, but I also believe that God must have his hands carrying her through this all. She has been through enough. She deserves us all to be here for her. She deserves the world.
The world is a cruel, cruel place. To us, at many times, nothing makes sense. Right now, the only sense I can make of all of this is that I am grateful for every memory I have of my uncle. I am grateful for the extended family he has given me. I am grateful for the way he cared for so many. I am grateful and honored to say he was my UNCLE PEBO. And he will be missed greatly.
This will not break us. This will strengthen us all. We will band together and surround my aunt and my cousins with the love, comfort, and support they need at this time. The world does not stop turning, but we can take on what they cannot. That's what family is for. That's what family is. God is with us and now we have a beautiful guardian angel to help guide us.
My only concern, my uncle was a jokester. He is now in a place where he is healthy, young, and free. What havoc will he wreak down on us in laughter showing us his love? That gives me hope. Knowing his joyful spirit will surround us all.
Today an integral part of our family was taken home to be with the Lord. He was my uncle. He was the third of six siblings in a rambunctious family born in the fifties. In a big way, he was the glue that held us all together when life takes its toll and slowly takes away the foundation.
The siblings began having children in the seventies and eighties. This only enlarged the family. Throughout is all they stayed close, always returning home. As the world goes, with such a large family, we began to lose members slowly throughout the years; whether it be to illness, tragedy, accident, what-have-you. The young, the old. None of us were immune. He was always there.
He lived a good life and made a huge impression on anyone he met. I currently live in my family's hometown and nearly on a daily basis I get asked about him specifically because he is so memorable. He was loud, outgoing, fearless, carefree, and an amazing athlete.....not to mention a bit of a charmer. He dealt with his own set of trials throughout.
As a young adult he married a wonderful woman. They had a beautiful daughter that was the center of their world. Unfortunately, he lost his love to cancer. As a young child, watching him with my cousin, I always thought how difficult it must have been to go through something so awful. My heart just prayed they would one day find peace in it all. Even though I was so young and not much was shared with me, my heart always wished the two of them hadn't gone through losing a mom and a wife. But, he loved his daughter and faced the world head on.
Part of the humor I find in my memories of my uncle was this stream of woman years after the loss of his wife. He always had a trophy by his side. It never surprised me because people adored him. As did all us cousins (minus the romance of course). Everyone wanted to be around him. One visit in particular that sticks out in my mind, we went to pick him up at the airport for some family gathering. I was very young, still in elementary school, but I had a clear understanding of how charming and full of life my uncle was. The trip to the airport was about 2 to 3 hours and I was excited the whole way. When we got there, my uncle had in tow a beautiful blond woman with a matching track outfit on. You know, the one's from the early nineties that were plastic with loud colors. (When I told her this story, she tells me it was his idea for the matching outfits....and that is just like him) My first thought was, "Here we go again." That trip back from the airport, I quickly realized I really liked this woman. I could also see my uncle saw her differently as well. Soon after that, she became his wife.
I remember being so happy that my uncle had found love again and that my cousin would have a mother figure around. Nothing can replace your mother, but growing up with only a man to turn to for advice must be difficult no matter how much love there is. My new aunt, who never seemed "new" to me, had three kids of her own. They happened to be around my age, which only heightened my excitement because I was the youngest cousin at the time and always felt left out. My uncle and my aunt blended this family together with their amazing love. I'm not trying to paint this pretty picture of butterflies and roses. All families have their own set of obstacles, but the love was undeniable between parents and children.
Our family has always been so large and continued to grow as the grandchildren began having kids. Throughout it all we all stayed as close as possible living only one or two states away from each other, we all returned home for family gatherings. As the years past, as they always do, my grandparents were taken from us and my uncle lost a sibling. In all of it, he had his own struggles with a blended family, teenage daughters, life......he always stayed positive. He always found joy or humor in everything. He always pushed through with a determination as if the worst case scenario wasn't even a factor. That was something that drew so many of us to him. That combined with his love.
He loved his family with everything he had in him. A mother, a father, a daughter, a wife, three additional children, brothers, a sister, nieces, nephews, soon a grandson, add in two son in laws, granddaughters to follow and not to mention the countless lifelong friends, coworkers, colleagues, acquaintances, etc. This man loved us all and we all knew how deep the love went.
About six years ago (don't quote me), I got a call from my parents giving me the news that my uncle had cancer. Forgive me now, it has all been overwhelming, so I cannot recall the specific type of cancer. I was devastated. My uncle was always the picture of health to me, but not only that, his spirit was so big, it just didn't seem possible. At the time, I worked as a medical assistant. I took the information to the doctor I worked for and asked him to explain it to me. He was reluctant, but I kept pushing. Finally, he took me to his office and got on his computer. He also pulled out some books. He went over all the information of this type of cancer with me, and it floored me. When my parents told me, things were so new, we were not sure we had all the right information. I went into denial. I figured everything the doctor I worked for had gone over with me was useless information. It was scary and there was no way my uncle, who was so vital and vibrant, could be suffering from that.
Not too long after that, I started getting calls from my uncle urging me to get help for my ailments. I had been dealing with symptoms and frightening episodes for a couple years and he wanted me to get treated or at least evaluated. I argued with him all the time. I was too young. I was working too hard. I was a new mom. He was being overbearing and making a big deal out of nothing. One day, as I was driving to work, my uncle's doctor called me. Imagine the look on my face and thoughts going through my head. The gentleman spoke with me in detail about my diabetes and the symptoms I was having. He recommended disability. He urged me to look at the whole picture because it was more serious than I was treating it. He even offered to help in any way if I decided I wasn't going to push back anymore. I thought about it for a few days, and the whole time I was amazed that my uncle was going through testing and who knows what else for a form of cancer and he was worried about little ol' me.
Of course, after some time and continued urging, I followed my uncle's advice. As soon as I did, he jumped on board. He gathered anyone he knew who could help to get me, my husband, and son in a situation for me to start getting better. These past four years with diagnosis after diagnosis for me, he has been there every step of the way. Sometimes, even living 8 hours away, popping up at my door just to check on me while he was in town. All this time, he was dealing with his diagnosis and all that it entailed. Never once did he complain or show any signs of weakness.
I remember many nights crying to my husband in fear that we would lose him. I didn't understand the diagnosis they had given my uncle. As you can tell, with me giving no details, I still don't understand it in totality. Which is so not like me. I am an information junkie, and I feel that information gives you power. If I cannot fix something, I will learn about it until I find a way. Something about my uncle being ill and it being so fragile was so overwhelming, I believe I was in denial because not a single piece of useful information stuck in my brain. I just knew he was very ill and I was terribly worried, but he was my uncle, the rock, nothing would take him.
When treatments started getting more intense, I would call to let him know I was thinking about him. I also wanted details. I wanted to know he was going to be alright. He would never allow the conversation to be focused on him. I would call and ask if he was OK. His answer was always, "I'm doing great, darlin'. How are you?" I'd try the same trick and push again for him to lean on me, but he wouldn't take it. He was concerned with me. He would give me advice and tell me what doctors to call or what he thought I should do for my own health and well being. He always asked about my son and my husband. Then, we would leave the conversation with an "I love you."
That did the job. He would calm my nerves enough. My denial would only solidify with his upbeat, positive, and lively personality. I know my illnesses changed me a lot so I began to assume that if he wasn't affected by this illness, I shouldn't be scared for him. The fear was always in the back of my mind, but I would always tell myself that the cycle of life takes us all. I never believed this would take my uncle.
He raised his daughter. That in itself is an honor many men take for granted or completely disregard. He loved with everything he had. He found his perfect match in life. He helped raise her kids as his own. All the dysfunction, trials, and tribulations never broke him or backed him away from loving his family. He helped raise his grandson who worships him. He has taken care of those around him in any way he can find. He has seen his share of heartache, and yet none of it ever broke his spirit. I attribute that to his amazing personality, but also to my aunt who stood by his side. She matches him perfectly. The joy and heartwarming feelings I get when I think of my uncle, I get the same feelings thinking of my aunt.
She did not have to join this crazy family. She did not have to put up with all of our antics. She did not have to take us all in with an open heart. She did. From day one, many moons ago, she has been someone I look up to. She is gorgeous. She is smart. She is just as charming and crazy as my uncle. She is loving and caring and so giving. She has been through some major tragedy these past few years. I believe she is glad to see my uncle's suffering come to an end, but I also believe that God must have his hands carrying her through this all. She has been through enough. She deserves us all to be here for her. She deserves the world.
The world is a cruel, cruel place. To us, at many times, nothing makes sense. Right now, the only sense I can make of all of this is that I am grateful for every memory I have of my uncle. I am grateful for the extended family he has given me. I am grateful for the way he cared for so many. I am grateful and honored to say he was my UNCLE PEBO. And he will be missed greatly.
This will not break us. This will strengthen us all. We will band together and surround my aunt and my cousins with the love, comfort, and support they need at this time. The world does not stop turning, but we can take on what they cannot. That's what family is for. That's what family is. God is with us and now we have a beautiful guardian angel to help guide us.
My only concern, my uncle was a jokester. He is now in a place where he is healthy, young, and free. What havoc will he wreak down on us in laughter showing us his love? That gives me hope. Knowing his joyful spirit will surround us all.
Monday, October 15, 2012
Worry Wart
Over the past several years this giant snowball has seeemed to engulf my life. More recently, particularly the past year or so, this snowball has begun to overpower me. I've brushed it off, pushed it under the rug, beaten it down, ignored it, and tried to look at everyday as a new chance to shake it off for good. To my own dismay, nothing has helped. So now, I turn to you, oh powerful blog..........to air it all out and hope the release will spark change.
I wouldn't normally "air my dirty laundry" for the whole world to see. I am beginning to understand that those of you out there who read my blog are generally people who are important to me and/or going through something so similar, judgement is never an issue......and I suppose if it is, my ignorance is bliss. I don't have enough money for a therapist. A journal is a good outlet and much cheaper. A blog is somewhat of a combination. Although, there may or may not be professionals reading it and offering up advice, a release coupled with the potential of a comment coming in with a perspective I cannot currently see may be more beneficial than thousands spent at a therapist.
I have been to therapists in the past. I have always been told I have good coping skills. I went to school for psychology and was stopped short 11 months before completing my bachelors. (That is a goal I intend to keep and complete when I am able!) I know a little about how the brain and emotions work. Very little; nonetheless, I have a background.
I am a stay at home mom and so I have plenty of time for introspection. I work my rear off with doctor appointments, insurance dealings, volunteering, and being a mom, but it is all done solo. For a while, literally up until today, I thought I suffered from anxiety and depression. I have been on medications for this in the past, but I prefer not to take medication. It was first brought to my attention in my mid teens. I mentioned to a professional that fights, whether physical or verbal, terrify me and always have. I do not have to be involved in the fight. It doesn't even have to have anything to do with me. The outcome could have no effect on my life whatsoever, but when I see or hear people fighting I go into panic mode. That opened a can of worms that could never be contained. I was dubbed a sufferer of social/general anxiety as well as depression based on what my parents told the professionals and placed on medication.
As the years passed, I saw several different doctors and therapists and went on and off several different treatments. Of course, as I got older the anxiety tended to fade a little (maybe it is better to say it got redistributed). The things that would terrify me then no longer terrify me, but I have a whole new set of worries. I never liked the medication. It would take away my symptoms, but it would also numb me out completely. I couldn't feel the good feelings or the bad feelings. I was usually the one who initiated the termination of treatment time and time again.
Once I was sent to the Mayo Clinic and these diagnoses of these chronic, autoimmune diseases started rolling in, I started to notice that a lot of what I complained about as a child that probably motivated my parents to continue to seek help for me was more likely due to these illnesses not a mental or chemical imbalance. Many symptoms have been explained away or treated as each disease has been diagnosed. Along with any chronic illness diagnosis, chemically imbalanced mind or not, comes anxiety and fear. If a major life change is caused by the diagnosis, it can also lead to depression. As I was moving further and further away from the anxiety sufferer and falling into a chronic illness sufferer.........some where along the way the two collided.
I have to be honest, losing so much of (what I thought was) myself sent me into a grieving process. Many people don't realize that making a life change of any nature requires you to grieve the loss of the old life. Often, with illness, the person actually does grieve the loss of themselves on a path to finding their "new self" or new comfort. The last 4 years has been me meandering in and out of depressed states. I'd like to think that I am not a depresssed person because so much of what a clinically depressed person suffers with, I do not. I do not want to take away from or discredit the real sufferers of clinical depression. Just like diabetes or lupus, it is a real medical condition with some serious complications. Clinical depression just does not seem to fit the bill for me.
I avoid telling my medical doctors when I am frustrated or down because they immediately jump to medication. Most anxiety medications are also anti-depressants. When a doctor hears I am having a hard time, their first thought is an anti-depressant. I hate these medications. I will do anything and everything I can to avoid them. The truth is that it is hard. All of it is hard. Life is hard in general, but add these diseases on top and this juggling act becomes incredible. Who in the world could deal with it all without ever feeling overwhelmed?! My guess is, not a single soul. Does that make me weak or "imbalanced" just because I am having a natural reaction? While it is a negative reaction, it is still a natural response. My thinking is, that is healthy. It would be of concern if I floated through these trials without so much as a grimace. So why the need for "help" with these medications? Especially, when the negative feelings are not interfering with my daily life and are not lasting weeks or months on end.
I was out for my morning walk this morning and it hit me like a ton of bricks. It is not depression per se' that is making me feel this way or that I need help with; it is anxiety. I have been explaining to my husband recently that the world is beginning to frighten me. Every where I turn there is a danger or a contaminate or a risk for myself. Every step I take, every move I make, a complication could occur. This is starting to affect my daily life.
Let's go into this a little deeper, if you will. When I was diagnosed with Type I Diabetes I remember the fear. I had Hashimoto's for about 7 years at that point, but symptoms were easily controlled and stability was easily reached. No fear necessary. As I have said before, my own father passed away from complications at the young age of 35. That has never left my mind. Then I was diagnosed with interstitial cystitis. I had to pay attention to everything that went into my mouth as well as how much of it to help stabilize and control the symptoms for each. Sleep, stress, excitement, sex, infection, exercise, etc. affected each. After a few years, I fell into a grove. It didn't stop there, though.
I never felt well. I assumed that living with these illnesses was hard plus my plate was full with school and work and eventually a new son. Then, the seizures started and progressed steadily. I was finally sent to the Mayo Clinic. That was traumatizing because I had only heard of lost cases going to the Mayo Clinic so I thought I was dying at the age of 25. The seizures were treated, but no other explanation found for all my symptoms. I was sent home knowing my journey was not anywhere near being over. Gradually, we started getting answers.
Celiac disease. That means cutting wheat, rye, barley, and oats out of your diet as well as be aware of cross contamination when eating outside of your home. Initially, this terrified me and infuriated me, but I read a lot of books. I educated myself as much as possible to make this change as easy as possible. The unfortunate part about it, I discovered I was one of the lucky one's that feels cross contamination within minutes and the symptoms do not let up for hours if not days depending on the severity and other factors. Imagine digesting broken glass. It is a painful, ripping and tearing sensation combined with cramping, nausea, diarrhea, constipation, etc. Any uncomfortable stomach upset symptom, I get it. I sometimes even get headaches and joint pains along with all of that. When people ask why I don't cheat I ask them "Would you rather eat that piece of bread and wake up with the worst hangover you have ever had or just look at it longingly? I choose the latter".
Undifferentiated Connective Tissue Disease. So much of the treatment for this disease has to do with reducing inflammation. To reduce inflammation they generally use steroids or NSAID's (non-steroidal anti-inflammatory drugs). Steroids raise your blood sugar to dangerous levels. Doctors advise against this treatment in diabetics, unless the benefits out-weigh the risks which is rare. NSAID's are rough on your stomach. Not only that, they thin your blood so they are dangerous for people with ulcers. Celiac disease causes damage in the small intestine lining, sometimes going all the way through the intestine wall, so NSAID's are not recommended for patients with Celiac disease. It can cause internal bleeding. Our only option was an anti-malaria drug. I do not know the science behind how it works, but somehow it does. In the rare case I suffer a flare up, I dread the steroids necessary. In addition to the threat of an anti-inflammatory drug, steroids leave a patient more susceptible to infection (which for myself, the danger is already grave), can cause bone loss (which for myself is already a concern due to malabsorption), and can trick the adrenal glands into thinking they no longer need to work which is a disease called Addison's. My doctors have been on high alert for Addison's since 2009 based on symptoms and the progression of the other illnesses. All of which seems like a ticking time bomb to me.
In the fall of 2011 I was finally seen by a gastroenterologist for all the stomache issues I had complained about for years. Once they Celiac disease was diagnosed and treated then found to be stable based on blood tests, there was no explanation for my continuing symptoms on a daily basis. I was literally not digesting food or absorbing it. I spent the majority of my time for many months in bed, in pain, and very weak. Over this past year it has been discovered slowly that I have pernicious anemia, chronic atrophic gastritis, colitis, proctitis, and lastly gastroparesis. In layman's terms that means my immune system is eating away at the lining of my stomach causing ulcers and malabsorption. My stomach produces no acid which is as bad as having too much acid. This causes messages to get lost so my pancreas does not produce digestive enzymes. The undigested or imporperly digested food then tears up my colon. There is some immune reaction in the colon as well, but no definitive terms other than those I previously stated. As you can imagine, this adds a whole other level to the Jenga game we have going on here.
Food is a source of contention for me. I am a Type I Diabetic on an insulin pump (plus I am human) so food is a necessity! Due to the Celiac disease and the diabetes my options are pretty limited. Add to that the digestive issues and we have to cut out even more. Proteins and fats are the hardest things to process and fiber is too bulky. I am limited to soft foods that are easy to digest, often liquids. I have to find the things with the highest nutrtional value in the smallest package to insure I am getting everything I need. Almost like getting gastric bypass without the gastric bypass. Plus, I had to stop running because it was too much for my body and my digestive system. I turned to alternating walking my dogs and yoga. Running was my passion. And still, it didn't stop there.
I was sent to an immunologist because it was becoming apparent that my immune system was very confused about its job description. At this point everything but the seizures were being caused by an autoimmune response. Plus, I had the rare disseminated histoplasmosis infection in 2009. The immunologist diagnosed my Autoimmune Polyendocrine Syndrome Type II based on blood tests and symptoms and history. He also discovered several allergies. Everything from cats, mold, and pecan to grass, mulberry trees, and cedar. They started me on allergy shots shortly thereafter, but warned the shots are only to help strengthen the body but they do not eliminate the threat of the allergen. I was prescribed an epipen and told to avoid my allergens as much as possible because my immune system is in such high alert all the time.
At that point, I started feeling like the girl in the bubble. It was explained to me that as long as my immune system is in attack mode, it will continue to do just that. It obviously is confused as to what is foreign and what is not so the idea is to avoid as much of the dangers that we know about as possible to try to prevent further progression of APS Type II. By the spring, I started to fall into a grove and by early to mid summer I hit stability, like many of my doctors had been hoping for across the board for years.
Like anybody else in this world, I am not immune to everyday struggles, trials, and tribulation. I had my own set of personal mishaps over the summer and into this fall. These more recent neurological episodes are our new mystery to solve. As I wait for these appointments to come and wonder what the outcome will be. I wonder if we will get any answers or just more questions. I wonder if relief for my headaches and disorientation will come soon.
Last week I was washing dishes and a glass began to fall. I went to catch it before it fell into the stainless steel sink, but my reaction time was not fast enough. I ended up tearing up my ring finger on my left hand. I had to go get it treated at the Emergency Room. I hate the hospital in general, so I was even more irritated that I was there for something as mundane as a glass cut. Trying to not make a big fuss over it, I declined the numbing of the wound before they fixed it up so the whole experience was ridiculously traumatizing. A week later I still am unable to get the finger wet or use it. I usually take my dogs when I walk (we have two), but I cannot hold a leash so I cannot take them. It would just be cruel to take one and not the other. Of course, I cannot do yoga. It's amazing how much you use that one finger. The week has been a little rough. Not to mention how badly it hurts.
So, as I was walking this morning, irritated because I wanted to take my dogs. Irritated because I'd rather do yoga since I have been deprived of it for a week now. Then I thought, "Everything I enjoy gets taken away from me!" As I talked myself down from that negativity, reminding myself the finger injury is only temporary, that's when the light clicked on. I was starting to beat myself up over being depressed when I realized, it is not depression at all. I have the mindset to walk myself out of that hole. I have the mindset to see the positive in all the negative. That's not the mind of a depressed person. Often, clinically depress can not even fathom positive thoughts. They do not see a light at the end of a tunnel or any hope. The anxiety of my fears is crippling me. As that thought came into my head, I started to examine recent events and my reaction to them. I started to notice just how badly the anxiety may be affecting me.
I am low on energy as it is. I prefer to utilize the energy I have for my son and husband. They are my priorities and therefore they deserve my best. My second priority is exercise. Without exercise, digestion, stress, and energy would be huge concerns. Exercise gives me more energy. It loosens my joints and muscles with lubrication and blood flow. It allows me this time to myself to just be me, and that is a huge stress reliever. Without exercise, it seems as if nothing moves inside my belly. Of course, exercise stabilizes blood sugar. All other energy just trickles down. If I have enough energy for fun with friends or family, I'll take advantage. Usually, the latter is what suffers the most.
I have noticed, moreso lately, that I haven't had a whole lot of energy left over for extra fun. I have declined invitations by friends for many things. Partly and mostly due to the fact that I do not feel well enough to get out and do something. Many times it is because I am just zapped completely of energy. While thinking back, I think anxiety has a lot to do with my lower than normal energy lately. I am so consumed by what may attack me next or what may be affected by external factors I cannot control, I have resorted to staying in my bubble as much as possible.
Spontaneity is not in my vocabulary currently. I have so many medications, diet restrictions, and physical limitations that picking up at a moment's notice is nearly impossible. If I do not have food prepared, I cannot just walk in to any grocery store or fast food restaurant and order something. Believe it or not I have been contaminated many times from just ordering a fountain drink. These restaurants are full of contaminating foods. Most packaged food has some sort of preservative or chemical or gluten that I cannot eat. My diet consists mostly all natural, whole foods. That's hard to get on the go. I need to be close to my insulin and testing supplies as well as my emergency medical devices. Although, many of this stuff comes in a portable form, I would need a suitcase rather than a purse to carry it all with me at all times.
The shear totality of what I face on a daily basis and the fact that I am completely competent and aware of it all leads to some overwhelming feelings. I tell my husband from time to time, I wish I didn't understand it all so well or that my awareness will fade a bit. I am already a bit of an introvert. I have always been a bit of a worrier so I guess that would classified as anxious. Pile on all these illnesses, their complications and their treatments, I've got myself in a bit of a beautiful disaster waiting to happen.
I move on to thinking (as my problem-solving, take the bull by the horns mind works) how do I fix this? I do not have money for a therapist nor have I ever felt like they help. I do not want to be classified as depressed considering I am grateful for the gifts in my life and see them on a daily basis. I do not want to burden friends and family with these thoughts. They run through my head continuously. If I were a friend or family member of myself, I would run at the thought of constant complaining or worrying. We all have things to worry about. What makes me different? Different worries, of course, but my worries are no more important than the rest I would assume. How do I tell myself to have faith in God's plan and stop sweating the mall stuff? How do I tell my heart to listen to my head?
And with that, I end this. It is long enough to begin with, but really how much deeper can we get into worrying and anxiety? All the worrying in the world never fixed any crisis. Worrying has never solved any problem. Anxiety seems useful in a dangerous situation, but to have that "fight or flight" response on a constant basis is exhausting and seemingly useless.
I wouldn't normally "air my dirty laundry" for the whole world to see. I am beginning to understand that those of you out there who read my blog are generally people who are important to me and/or going through something so similar, judgement is never an issue......and I suppose if it is, my ignorance is bliss. I don't have enough money for a therapist. A journal is a good outlet and much cheaper. A blog is somewhat of a combination. Although, there may or may not be professionals reading it and offering up advice, a release coupled with the potential of a comment coming in with a perspective I cannot currently see may be more beneficial than thousands spent at a therapist.
I have been to therapists in the past. I have always been told I have good coping skills. I went to school for psychology and was stopped short 11 months before completing my bachelors. (That is a goal I intend to keep and complete when I am able!) I know a little about how the brain and emotions work. Very little; nonetheless, I have a background.
I am a stay at home mom and so I have plenty of time for introspection. I work my rear off with doctor appointments, insurance dealings, volunteering, and being a mom, but it is all done solo. For a while, literally up until today, I thought I suffered from anxiety and depression. I have been on medications for this in the past, but I prefer not to take medication. It was first brought to my attention in my mid teens. I mentioned to a professional that fights, whether physical or verbal, terrify me and always have. I do not have to be involved in the fight. It doesn't even have to have anything to do with me. The outcome could have no effect on my life whatsoever, but when I see or hear people fighting I go into panic mode. That opened a can of worms that could never be contained. I was dubbed a sufferer of social/general anxiety as well as depression based on what my parents told the professionals and placed on medication.
As the years passed, I saw several different doctors and therapists and went on and off several different treatments. Of course, as I got older the anxiety tended to fade a little (maybe it is better to say it got redistributed). The things that would terrify me then no longer terrify me, but I have a whole new set of worries. I never liked the medication. It would take away my symptoms, but it would also numb me out completely. I couldn't feel the good feelings or the bad feelings. I was usually the one who initiated the termination of treatment time and time again.
Once I was sent to the Mayo Clinic and these diagnoses of these chronic, autoimmune diseases started rolling in, I started to notice that a lot of what I complained about as a child that probably motivated my parents to continue to seek help for me was more likely due to these illnesses not a mental or chemical imbalance. Many symptoms have been explained away or treated as each disease has been diagnosed. Along with any chronic illness diagnosis, chemically imbalanced mind or not, comes anxiety and fear. If a major life change is caused by the diagnosis, it can also lead to depression. As I was moving further and further away from the anxiety sufferer and falling into a chronic illness sufferer.........some where along the way the two collided.
I have to be honest, losing so much of (what I thought was) myself sent me into a grieving process. Many people don't realize that making a life change of any nature requires you to grieve the loss of the old life. Often, with illness, the person actually does grieve the loss of themselves on a path to finding their "new self" or new comfort. The last 4 years has been me meandering in and out of depressed states. I'd like to think that I am not a depresssed person because so much of what a clinically depressed person suffers with, I do not. I do not want to take away from or discredit the real sufferers of clinical depression. Just like diabetes or lupus, it is a real medical condition with some serious complications. Clinical depression just does not seem to fit the bill for me.
I avoid telling my medical doctors when I am frustrated or down because they immediately jump to medication. Most anxiety medications are also anti-depressants. When a doctor hears I am having a hard time, their first thought is an anti-depressant. I hate these medications. I will do anything and everything I can to avoid them. The truth is that it is hard. All of it is hard. Life is hard in general, but add these diseases on top and this juggling act becomes incredible. Who in the world could deal with it all without ever feeling overwhelmed?! My guess is, not a single soul. Does that make me weak or "imbalanced" just because I am having a natural reaction? While it is a negative reaction, it is still a natural response. My thinking is, that is healthy. It would be of concern if I floated through these trials without so much as a grimace. So why the need for "help" with these medications? Especially, when the negative feelings are not interfering with my daily life and are not lasting weeks or months on end.
I was out for my morning walk this morning and it hit me like a ton of bricks. It is not depression per se' that is making me feel this way or that I need help with; it is anxiety. I have been explaining to my husband recently that the world is beginning to frighten me. Every where I turn there is a danger or a contaminate or a risk for myself. Every step I take, every move I make, a complication could occur. This is starting to affect my daily life.
Let's go into this a little deeper, if you will. When I was diagnosed with Type I Diabetes I remember the fear. I had Hashimoto's for about 7 years at that point, but symptoms were easily controlled and stability was easily reached. No fear necessary. As I have said before, my own father passed away from complications at the young age of 35. That has never left my mind. Then I was diagnosed with interstitial cystitis. I had to pay attention to everything that went into my mouth as well as how much of it to help stabilize and control the symptoms for each. Sleep, stress, excitement, sex, infection, exercise, etc. affected each. After a few years, I fell into a grove. It didn't stop there, though.
I never felt well. I assumed that living with these illnesses was hard plus my plate was full with school and work and eventually a new son. Then, the seizures started and progressed steadily. I was finally sent to the Mayo Clinic. That was traumatizing because I had only heard of lost cases going to the Mayo Clinic so I thought I was dying at the age of 25. The seizures were treated, but no other explanation found for all my symptoms. I was sent home knowing my journey was not anywhere near being over. Gradually, we started getting answers.
Celiac disease. That means cutting wheat, rye, barley, and oats out of your diet as well as be aware of cross contamination when eating outside of your home. Initially, this terrified me and infuriated me, but I read a lot of books. I educated myself as much as possible to make this change as easy as possible. The unfortunate part about it, I discovered I was one of the lucky one's that feels cross contamination within minutes and the symptoms do not let up for hours if not days depending on the severity and other factors. Imagine digesting broken glass. It is a painful, ripping and tearing sensation combined with cramping, nausea, diarrhea, constipation, etc. Any uncomfortable stomach upset symptom, I get it. I sometimes even get headaches and joint pains along with all of that. When people ask why I don't cheat I ask them "Would you rather eat that piece of bread and wake up with the worst hangover you have ever had or just look at it longingly? I choose the latter".
Undifferentiated Connective Tissue Disease. So much of the treatment for this disease has to do with reducing inflammation. To reduce inflammation they generally use steroids or NSAID's (non-steroidal anti-inflammatory drugs). Steroids raise your blood sugar to dangerous levels. Doctors advise against this treatment in diabetics, unless the benefits out-weigh the risks which is rare. NSAID's are rough on your stomach. Not only that, they thin your blood so they are dangerous for people with ulcers. Celiac disease causes damage in the small intestine lining, sometimes going all the way through the intestine wall, so NSAID's are not recommended for patients with Celiac disease. It can cause internal bleeding. Our only option was an anti-malaria drug. I do not know the science behind how it works, but somehow it does. In the rare case I suffer a flare up, I dread the steroids necessary. In addition to the threat of an anti-inflammatory drug, steroids leave a patient more susceptible to infection (which for myself, the danger is already grave), can cause bone loss (which for myself is already a concern due to malabsorption), and can trick the adrenal glands into thinking they no longer need to work which is a disease called Addison's. My doctors have been on high alert for Addison's since 2009 based on symptoms and the progression of the other illnesses. All of which seems like a ticking time bomb to me.
In the fall of 2011 I was finally seen by a gastroenterologist for all the stomache issues I had complained about for years. Once they Celiac disease was diagnosed and treated then found to be stable based on blood tests, there was no explanation for my continuing symptoms on a daily basis. I was literally not digesting food or absorbing it. I spent the majority of my time for many months in bed, in pain, and very weak. Over this past year it has been discovered slowly that I have pernicious anemia, chronic atrophic gastritis, colitis, proctitis, and lastly gastroparesis. In layman's terms that means my immune system is eating away at the lining of my stomach causing ulcers and malabsorption. My stomach produces no acid which is as bad as having too much acid. This causes messages to get lost so my pancreas does not produce digestive enzymes. The undigested or imporperly digested food then tears up my colon. There is some immune reaction in the colon as well, but no definitive terms other than those I previously stated. As you can imagine, this adds a whole other level to the Jenga game we have going on here.
Food is a source of contention for me. I am a Type I Diabetic on an insulin pump (plus I am human) so food is a necessity! Due to the Celiac disease and the diabetes my options are pretty limited. Add to that the digestive issues and we have to cut out even more. Proteins and fats are the hardest things to process and fiber is too bulky. I am limited to soft foods that are easy to digest, often liquids. I have to find the things with the highest nutrtional value in the smallest package to insure I am getting everything I need. Almost like getting gastric bypass without the gastric bypass. Plus, I had to stop running because it was too much for my body and my digestive system. I turned to alternating walking my dogs and yoga. Running was my passion. And still, it didn't stop there.
I was sent to an immunologist because it was becoming apparent that my immune system was very confused about its job description. At this point everything but the seizures were being caused by an autoimmune response. Plus, I had the rare disseminated histoplasmosis infection in 2009. The immunologist diagnosed my Autoimmune Polyendocrine Syndrome Type II based on blood tests and symptoms and history. He also discovered several allergies. Everything from cats, mold, and pecan to grass, mulberry trees, and cedar. They started me on allergy shots shortly thereafter, but warned the shots are only to help strengthen the body but they do not eliminate the threat of the allergen. I was prescribed an epipen and told to avoid my allergens as much as possible because my immune system is in such high alert all the time.
At that point, I started feeling like the girl in the bubble. It was explained to me that as long as my immune system is in attack mode, it will continue to do just that. It obviously is confused as to what is foreign and what is not so the idea is to avoid as much of the dangers that we know about as possible to try to prevent further progression of APS Type II. By the spring, I started to fall into a grove and by early to mid summer I hit stability, like many of my doctors had been hoping for across the board for years.
Like anybody else in this world, I am not immune to everyday struggles, trials, and tribulation. I had my own set of personal mishaps over the summer and into this fall. These more recent neurological episodes are our new mystery to solve. As I wait for these appointments to come and wonder what the outcome will be. I wonder if we will get any answers or just more questions. I wonder if relief for my headaches and disorientation will come soon.
Last week I was washing dishes and a glass began to fall. I went to catch it before it fell into the stainless steel sink, but my reaction time was not fast enough. I ended up tearing up my ring finger on my left hand. I had to go get it treated at the Emergency Room. I hate the hospital in general, so I was even more irritated that I was there for something as mundane as a glass cut. Trying to not make a big fuss over it, I declined the numbing of the wound before they fixed it up so the whole experience was ridiculously traumatizing. A week later I still am unable to get the finger wet or use it. I usually take my dogs when I walk (we have two), but I cannot hold a leash so I cannot take them. It would just be cruel to take one and not the other. Of course, I cannot do yoga. It's amazing how much you use that one finger. The week has been a little rough. Not to mention how badly it hurts.
So, as I was walking this morning, irritated because I wanted to take my dogs. Irritated because I'd rather do yoga since I have been deprived of it for a week now. Then I thought, "Everything I enjoy gets taken away from me!" As I talked myself down from that negativity, reminding myself the finger injury is only temporary, that's when the light clicked on. I was starting to beat myself up over being depressed when I realized, it is not depression at all. I have the mindset to walk myself out of that hole. I have the mindset to see the positive in all the negative. That's not the mind of a depressed person. Often, clinically depress can not even fathom positive thoughts. They do not see a light at the end of a tunnel or any hope. The anxiety of my fears is crippling me. As that thought came into my head, I started to examine recent events and my reaction to them. I started to notice just how badly the anxiety may be affecting me.
I am low on energy as it is. I prefer to utilize the energy I have for my son and husband. They are my priorities and therefore they deserve my best. My second priority is exercise. Without exercise, digestion, stress, and energy would be huge concerns. Exercise gives me more energy. It loosens my joints and muscles with lubrication and blood flow. It allows me this time to myself to just be me, and that is a huge stress reliever. Without exercise, it seems as if nothing moves inside my belly. Of course, exercise stabilizes blood sugar. All other energy just trickles down. If I have enough energy for fun with friends or family, I'll take advantage. Usually, the latter is what suffers the most.
I have noticed, moreso lately, that I haven't had a whole lot of energy left over for extra fun. I have declined invitations by friends for many things. Partly and mostly due to the fact that I do not feel well enough to get out and do something. Many times it is because I am just zapped completely of energy. While thinking back, I think anxiety has a lot to do with my lower than normal energy lately. I am so consumed by what may attack me next or what may be affected by external factors I cannot control, I have resorted to staying in my bubble as much as possible.
Spontaneity is not in my vocabulary currently. I have so many medications, diet restrictions, and physical limitations that picking up at a moment's notice is nearly impossible. If I do not have food prepared, I cannot just walk in to any grocery store or fast food restaurant and order something. Believe it or not I have been contaminated many times from just ordering a fountain drink. These restaurants are full of contaminating foods. Most packaged food has some sort of preservative or chemical or gluten that I cannot eat. My diet consists mostly all natural, whole foods. That's hard to get on the go. I need to be close to my insulin and testing supplies as well as my emergency medical devices. Although, many of this stuff comes in a portable form, I would need a suitcase rather than a purse to carry it all with me at all times.
The shear totality of what I face on a daily basis and the fact that I am completely competent and aware of it all leads to some overwhelming feelings. I tell my husband from time to time, I wish I didn't understand it all so well or that my awareness will fade a bit. I am already a bit of an introvert. I have always been a bit of a worrier so I guess that would classified as anxious. Pile on all these illnesses, their complications and their treatments, I've got myself in a bit of a beautiful disaster waiting to happen.
I move on to thinking (as my problem-solving, take the bull by the horns mind works) how do I fix this? I do not have money for a therapist nor have I ever felt like they help. I do not want to be classified as depressed considering I am grateful for the gifts in my life and see them on a daily basis. I do not want to burden friends and family with these thoughts. They run through my head continuously. If I were a friend or family member of myself, I would run at the thought of constant complaining or worrying. We all have things to worry about. What makes me different? Different worries, of course, but my worries are no more important than the rest I would assume. How do I tell myself to have faith in God's plan and stop sweating the mall stuff? How do I tell my heart to listen to my head?
And with that, I end this. It is long enough to begin with, but really how much deeper can we get into worrying and anxiety? All the worrying in the world never fixed any crisis. Worrying has never solved any problem. Anxiety seems useful in a dangerous situation, but to have that "fight or flight" response on a constant basis is exhausting and seemingly useless.
Friday, October 5, 2012
Chance Meetings
Yesterday I went to my son's soccer game. I have to say that watching kids as young as 3 years old try to figure out and play the game of soccer, in itself, is a joy. He has been playing since he was 5 and he is about to turn 7. At this age they still do not have a full field or team. The coaches are allowed on the field to guide and direct the players. It is total chaos with plenty of smiles, laughs, trips, and spills. Best way to spend an hour of your life, in my opinion. The kids joy is contagious.
Building on that, I volunteer to help out during lunch at his school once to twice a week. It's almost like an addiction. I used to volunteer in his head start classes as well. I could never be a teacher. I have so much respect for those who take responsibility for our kids for 6 to 7 hours a day. They put in so much work, it is remarkable. Volunteering, however, is at my own will, and I am not held "accountable" for much so the stress aspect is removed. I get to just fully enjoy the innocence and joy of children. Even in their little arguments or temper tantrums, you can feel their emotions. It really keeps you grounded, and can help remind you what is really worth focusing on in life.
Although, I am supposed to keep my life as "easy" as possible, we all need something to look forward to everyday. I look forward to sharing joys and trials with my son.
Last night, at the soccer game, my mother in law said hello to the woman who sat down right next to me. They seemed as if they knew each other. My mother in law is much more outgoing and vocal than I am, so I brushed it off as her being extra friendly. Within a few minutes, they started up a conversation. It turns out, they knew each other because they worked together at an elementary school a few years back. My mother in law had been there 30 plus years until last May when she retired. This woman I had never seen so I assumed it was a short term working relationship they had. I was right.
As the conversation went on, they got to the topic of "What are you up to now?" My mother in law talked about her retirement and the freedom she enjoys these days. The other woman said "my lupus began to flare up so my husband suggested I just stay at home to take care of myself. I work a few days now at the college, but....." That's when my mother in law gave me the look.
She and I had just been discussing the frustrations of all the medicines, appointments, tests, and maintenance I go through with all these diseases. While waiting for these most recent neurology episodes to be figured out, it seems to make things more difficult. I am one big, giant Jenga game on top of a high wire. I am one symptom or one medication away from the whole thing toppling over. I have to be so careful as to what I chose to do and what treatments I decide to use because one inevitably affects another. I was telling her that sometimes I think that modern medicine is a cop out and we should let natural selection do its job. BUT I want to be here for my son and I truly see the treatments as a gift.....I'm just tired of the mary-go-round.
I do not, especially with strangers (face to face), openly discuss my illnesses unless directly asked or it is a necessity. My mother in law's look was her nudging me to speak to this woman. I opened my mouth, "Is it just too tiring to work with your lupus?"
That began our conversation. Turns out she was having very similar neurological problems that preceded her leaving her job. She is old enough to be my mother because she was there watching her grandson who is on my son's team. She talked about the years of mystery she went through with doctors not knowing what was wrong with her. It wasn't until after her 3rd child, I believe to be about 25-30 right now, did doctors finally diagnosed her with lupus. As the conversation went on, I realized what a mirror I was looking into. It was almost refreshing....if nothing else, validating.
I explained to her that I have never actually met another person with lupus. I have seen them on TV, read about them online or in magazines, heard my doctors stories of other patients, but NEVER have I met anyone with lupus before. She was very friendly and kind. She told me I would be in her prayers. I was so intrigued by every word she said, yet it was this casual conversation during our kid's/ grand kid's soccer game.
I came home and told my husband all about it. I felt so good knowing that the symptoms I have are not a mystery. They are a mystery to us, but this other lupus patient has them and is being treated so there is hope. I am not crazy or a hypochondriac because she talked to me and told me these things first hand before I even let on that these symptoms were bothering me. It is a feeling I cannot describe. A feeling of, "I knew I wasn't alone, but now I am really not alone.....not even in this town. There is someone else who understands from the inside." That was enough for me to walk away with some peace.
My husband and I got into the deep talking. I told him it was almost bittersweet meeting her. I am glad to feel validated. I am glad to not feel like such an outcast. I am glad to see this woman being able to go see her grandchildren play soccer. She got to watch her 3 children grow up to adulthood, get married, and have kids. That's something I thought was impossible for myself. Then, to know she has had similar symptoms and problems that have been determined and treated gives me hope.
The flip side to this all is the look in her face. She was just as tired, frustrated, and depleted as I. She and I were the only two wearing hoodies and shivering. It was an evening game in New Mexico fall so even though the temperature was 65-70 degrees, the breeze was cold. Lupus patients, especially on treatment, are very cold intolerant. I'll spare the science behind it, but it has something to do with vasoconstriction. She also talked about her "wasted degrees" because she can not work due to her illness. "All the wasted time and effort and knowledge" she said. (My husband has always told me "knowledge is priceless, a degree is never wasted") She even spoke of the misunderstanding from the outside world. We look like normal people on the outside so we are often judged when a flare up occurs. I could tell her emotions were so very similar to my own on the inside even though neither of us went there when talking to one another.
That fear of this constant struggle. It haunts me. It used to haunt me before I had any diagnoses, wondering if I would ever feel like myself again or get some relief. Now, I have plenty of diagnoses combined with some stability in many areas, yet I still feel physically bad more days than not (4-5 out of 7 days in a week). That look in her eye and that unspoken understanding of how hard it all is, broke my heart. I told my husband, "I would love to see our son grow up and live to see his children grow, but I cannot imagine another 40 years of this day in and day out."
That is something I will need to mull over the next few days. I will see her often throughout the season so maybe she will be somewhat of a role model. Her grown kids seem very happy and love her dearly, so she did something right. Plus, the family is so close knit. All things to strive for in my future. It is so hard to compartmentalize the negative aspects out of all that good.
As I laid in bed last night thinking about the days events I told myself I needed to blog about this chance meeting I had because it was so impactful. I sat down at my computer to get this novel of a blog (as they all are) out, and I had an epiphany- there have been more chance meetings I was not so astute about. The woman who works in the cafeteria at my son's school had a daughter with Type I Diabetes. Unfortunately, the daughter has since passed away. I believe she would be in her early 40s by now. October is particularly hard for the mother because her daughter passed on Halloween. Nonetheless, yesterday she had us decorating up a storm in the cafeteria for the kids to enjoy this month.
School has been in session for about 6 weeks and I have been volunteering for at least a month now. Throughout this month we have shared small talk that gradually leads into personal short stories. She has shared with me several stories of her daughter. Mostly good. All the little quirks she had and the funny things she would say or do. She also talks about the dog she inherited from her daughter. This lunch lady has seen so much trouble in her life, and yet every time I show up, there she is with a smile on her face and a friendly greeting.
In the short month or so I have been working with her and getting to know her she has taught me so much. I also enjoy the fact that she is not judgemental or insensitive to me about any of the limitations I have or special requirements that may be necessary.
I look at this now as a way God is walking me through this, if not carrying me. I may not always take notice, but he is sending down subtle signs here, there, and everywhere that, no-matter-what, we are all going to be OK. That, in its own right, gives me peace and puts a smile on my face. I feel horrible today, but I feel taken care of and watched over as well. That makes the pain a little easier to take.
I do have to note my son goes to a Catholic school so every Thursday morning they have mass as well as complete their catechism requirements during school hours. The other day he came home from school and told me he was so happy to learn that I will not be sick in heaven. "In heaven, everyone is young and healthy. At their best." he said with a beaming smile. To that, all I could respond was "You're absolutely right." with a big return hug and an equally beaming smile.
Building on that, I volunteer to help out during lunch at his school once to twice a week. It's almost like an addiction. I used to volunteer in his head start classes as well. I could never be a teacher. I have so much respect for those who take responsibility for our kids for 6 to 7 hours a day. They put in so much work, it is remarkable. Volunteering, however, is at my own will, and I am not held "accountable" for much so the stress aspect is removed. I get to just fully enjoy the innocence and joy of children. Even in their little arguments or temper tantrums, you can feel their emotions. It really keeps you grounded, and can help remind you what is really worth focusing on in life.
Although, I am supposed to keep my life as "easy" as possible, we all need something to look forward to everyday. I look forward to sharing joys and trials with my son.
Last night, at the soccer game, my mother in law said hello to the woman who sat down right next to me. They seemed as if they knew each other. My mother in law is much more outgoing and vocal than I am, so I brushed it off as her being extra friendly. Within a few minutes, they started up a conversation. It turns out, they knew each other because they worked together at an elementary school a few years back. My mother in law had been there 30 plus years until last May when she retired. This woman I had never seen so I assumed it was a short term working relationship they had. I was right.
As the conversation went on, they got to the topic of "What are you up to now?" My mother in law talked about her retirement and the freedom she enjoys these days. The other woman said "my lupus began to flare up so my husband suggested I just stay at home to take care of myself. I work a few days now at the college, but....." That's when my mother in law gave me the look.
She and I had just been discussing the frustrations of all the medicines, appointments, tests, and maintenance I go through with all these diseases. While waiting for these most recent neurology episodes to be figured out, it seems to make things more difficult. I am one big, giant Jenga game on top of a high wire. I am one symptom or one medication away from the whole thing toppling over. I have to be so careful as to what I chose to do and what treatments I decide to use because one inevitably affects another. I was telling her that sometimes I think that modern medicine is a cop out and we should let natural selection do its job. BUT I want to be here for my son and I truly see the treatments as a gift.....I'm just tired of the mary-go-round.
I do not, especially with strangers (face to face), openly discuss my illnesses unless directly asked or it is a necessity. My mother in law's look was her nudging me to speak to this woman. I opened my mouth, "Is it just too tiring to work with your lupus?"
That began our conversation. Turns out she was having very similar neurological problems that preceded her leaving her job. She is old enough to be my mother because she was there watching her grandson who is on my son's team. She talked about the years of mystery she went through with doctors not knowing what was wrong with her. It wasn't until after her 3rd child, I believe to be about 25-30 right now, did doctors finally diagnosed her with lupus. As the conversation went on, I realized what a mirror I was looking into. It was almost refreshing....if nothing else, validating.
I explained to her that I have never actually met another person with lupus. I have seen them on TV, read about them online or in magazines, heard my doctors stories of other patients, but NEVER have I met anyone with lupus before. She was very friendly and kind. She told me I would be in her prayers. I was so intrigued by every word she said, yet it was this casual conversation during our kid's/ grand kid's soccer game.
I came home and told my husband all about it. I felt so good knowing that the symptoms I have are not a mystery. They are a mystery to us, but this other lupus patient has them and is being treated so there is hope. I am not crazy or a hypochondriac because she talked to me and told me these things first hand before I even let on that these symptoms were bothering me. It is a feeling I cannot describe. A feeling of, "I knew I wasn't alone, but now I am really not alone.....not even in this town. There is someone else who understands from the inside." That was enough for me to walk away with some peace.
My husband and I got into the deep talking. I told him it was almost bittersweet meeting her. I am glad to feel validated. I am glad to not feel like such an outcast. I am glad to see this woman being able to go see her grandchildren play soccer. She got to watch her 3 children grow up to adulthood, get married, and have kids. That's something I thought was impossible for myself. Then, to know she has had similar symptoms and problems that have been determined and treated gives me hope.
The flip side to this all is the look in her face. She was just as tired, frustrated, and depleted as I. She and I were the only two wearing hoodies and shivering. It was an evening game in New Mexico fall so even though the temperature was 65-70 degrees, the breeze was cold. Lupus patients, especially on treatment, are very cold intolerant. I'll spare the science behind it, but it has something to do with vasoconstriction. She also talked about her "wasted degrees" because she can not work due to her illness. "All the wasted time and effort and knowledge" she said. (My husband has always told me "knowledge is priceless, a degree is never wasted") She even spoke of the misunderstanding from the outside world. We look like normal people on the outside so we are often judged when a flare up occurs. I could tell her emotions were so very similar to my own on the inside even though neither of us went there when talking to one another.
That fear of this constant struggle. It haunts me. It used to haunt me before I had any diagnoses, wondering if I would ever feel like myself again or get some relief. Now, I have plenty of diagnoses combined with some stability in many areas, yet I still feel physically bad more days than not (4-5 out of 7 days in a week). That look in her eye and that unspoken understanding of how hard it all is, broke my heart. I told my husband, "I would love to see our son grow up and live to see his children grow, but I cannot imagine another 40 years of this day in and day out."
That is something I will need to mull over the next few days. I will see her often throughout the season so maybe she will be somewhat of a role model. Her grown kids seem very happy and love her dearly, so she did something right. Plus, the family is so close knit. All things to strive for in my future. It is so hard to compartmentalize the negative aspects out of all that good.
As I laid in bed last night thinking about the days events I told myself I needed to blog about this chance meeting I had because it was so impactful. I sat down at my computer to get this novel of a blog (as they all are) out, and I had an epiphany- there have been more chance meetings I was not so astute about. The woman who works in the cafeteria at my son's school had a daughter with Type I Diabetes. Unfortunately, the daughter has since passed away. I believe she would be in her early 40s by now. October is particularly hard for the mother because her daughter passed on Halloween. Nonetheless, yesterday she had us decorating up a storm in the cafeteria for the kids to enjoy this month.
School has been in session for about 6 weeks and I have been volunteering for at least a month now. Throughout this month we have shared small talk that gradually leads into personal short stories. She has shared with me several stories of her daughter. Mostly good. All the little quirks she had and the funny things she would say or do. She also talks about the dog she inherited from her daughter. This lunch lady has seen so much trouble in her life, and yet every time I show up, there she is with a smile on her face and a friendly greeting.
In the short month or so I have been working with her and getting to know her she has taught me so much. I also enjoy the fact that she is not judgemental or insensitive to me about any of the limitations I have or special requirements that may be necessary.
I look at this now as a way God is walking me through this, if not carrying me. I may not always take notice, but he is sending down subtle signs here, there, and everywhere that, no-matter-what, we are all going to be OK. That, in its own right, gives me peace and puts a smile on my face. I feel horrible today, but I feel taken care of and watched over as well. That makes the pain a little easier to take.
I do have to note my son goes to a Catholic school so every Thursday morning they have mass as well as complete their catechism requirements during school hours. The other day he came home from school and told me he was so happy to learn that I will not be sick in heaven. "In heaven, everyone is young and healthy. At their best." he said with a beaming smile. To that, all I could respond was "You're absolutely right." with a big return hug and an equally beaming smile.
Friday, September 28, 2012
Flip The Switch
My last blog post was pretty dark. I am not normally that type of person. Let's be honest though, that person lives in all of our heads no matter how hard we try to fight our demons. It is completely normal, and definitely healthy to let those emotions flow out occasionally. Otherwise, we are all just ticking time bombs waiting to be detonated. I like to use a 90:10 rule.
The 90:10 rule is something I came up with on my own (of course there are various versions of this idea) to justify my typical womanly mood swings, but realized that it helps greatly in times of great stress. I allow myself to be that dark, negative, emotional victim (if those words are even a good description) for about 10% of the time. The remaining 90% of the time my mind just naturally goes towards the positive.
I came up with this idea within these past few years. Having a child and just trying to help them through their tantrums gives you great insight. Obviously as you get older life does get harder. For myself, these health issues just keep snowballing as I get older as well. At times it is completely overwhelming. I have had 2 relatives take their own lives as well as many others use drugs or even lose their life to drugs. My own personal thought on those matters is that it was a matter of the heart and mind not being able to find balance, and that is how those individuals coped with their struggles.
One relative in particular that took her own life was extremely traumatic for me. She was my aunt. I had always seen her as a beautiful, strong, independent woman. I thought she was smart. I thought she was incredibly resilient. I thought she knew how to take care of herself even if no one else would. I really looked up to her and admired her as well as loved her so.
When I got the news of what had happened I was shocked! I knew she had issues just like any other woman. She had two kids, was a divorcee, and worked as a nurse. As a child I was not in on great details of her life nor do they need to be shared here, but I knew she had the same insecurities many woman do. I could not believe that she thought death would be better than continuing to live on this earth. I was devastated.
I remember thinking over and over, "Didn't she know how much I loved her? Didn't she know how bad this would hurt me? How could she do this to me?" The devastation turned into anger. I thought she should have reached out to me. If she had I would have told her all those things I thought about her. If she had I would have told her how much I loved her. I thought she knew, but maybe I didn't say it enough. I was angry at the pain she caused the rest of the family. Then, I was angry at my family, wondering if they had not shown her enough of their love and need for her.
As I got older, I realized the reality behind a situation like that is far beyond anything I could ever comprehend. It took a lot of religious talks, faith, philosophical talks, and just plain life lessons to know that she was doing what she thought was best for her at that time. At some point in every one's life, you have to do what is best for you. No one can decide what is best for you, but yourself. That doesn't mean I have to agree with it or understand it; that only means that every person has an untold story. Life is based on survival. To survive, you must do for you. Short story turned long, her death has taught me a lot.
The most important lesson I learned from her death was to not allow myself to get sucked into the black hole of despair that we all face in life. Not one single person on this earth is immune to tragedy, pain, hurt, or suffering.
My own father died from complications of Type I Diabetes when I was 3 months away from turning 5 years old. He was 35 at the time. Monday (my dark day post) would have been his 60th birthday. That, the death of a parent, is something you never get over. It has been nearly 25 years and it still feels very fresh. The milestones in life are particularly hard; high school graduation, turning 18, turning 21, pregnancy, giving birth, marriage, college graduation, buying a house, etc. I am realizing that it is actually getting harder as I get older because no matter how old you are, you are still your parents' child and look to them for guidance.
These past few years have been increasingly hard in that manner. Although I have had some autoimmune diseases for 15 plus years now, 2008 really began the snowball of the enormity of what I am facing. I had my son in 2005. From the moment I found out I had diabetes, in my head, I would be dead by the time I was 35. I soon came to realize the advances in medicine and the differences in our lifestyles that would most likely save me from what I thought was my own death sentence. As the years passed and the diagnoses kept rolling in, I kept that "medical advances" and "lifestyle differences" in my head consistently to keep myself from that black hole. I certainly thought that once "stability" was reached, I would be in a much better place physically so the emotions would be easier to control. I suppose that was my mind's coping mechanism to get through such traumatic experiences.
I am now 29 years old and 6 months from my 30th birthday. Last fall I was going through the struggles with my digestive system with no clear answers. It was daily torture, and continues to be, but now we have answers and stability. This fall it is these new episodes with my head. (Happy to report my MRI came back normal, neuro appointment next month) Since 2008 and my first visit to the Mayo Clinic I have not gained much back in life other than wisdom and knowledge. By that, I mean my quality of life has decreased and my physical well being is progressively getting worse. (I work hard everyday to slow the progression as much as possible) I am not on my death bed. I do not want anyone to think I am like a terminal cancer patient or even look at myself that way. Life is just difficult with so much to juggle. I am in no way shape or form a victim in this; these are the cards I was dealt.
Feeling like we have never had a complete handle on my body and it's illnesses is frustrating. I have lived for years with the hope that "stability" would bring me to that place where I could then begin to process the emotional side of all that has been thrown at me, and possibly get to a place of peace with it all.
My son will be 7 next month. As I said, I will be 30 in the new year. I do not feel like I am in a better place physically than I was when I was first sent to the Mayo Clinic. I have never expected a magic pill or a cure, just respite. At this point, with one thing after another and one unanswered mystery after another I am becoming increasingly more frightened. There is no way I can prevent my mind from going to that place that focuses on my own dad's death at 35 when I was a child and me, now moving into my 30s, and my young son.
I try to take advantage of every moment I have with him. I do think that is a blessing that comes from the death of my own dad as well as my illnesses; I realized that literally every second counts. Even if I were not chronically ill, tomorrow is never promised.
That is my main theme for this post. So often we get caught up in the moment. It is easy to get caught up in greed, gossip, comparison, status, self righteousness, and so on. The list could go on for days. It is human nature to seek comfort. We use justifications for our actions to ease our minds and make ourselves comfortable. Misery seeks company. A smile is contagious. Keeping up with the Joneses. The grass is always greener on the other side. Blame and shame are some of the easiest crutches we use to seek comfort. So much of this can be counterproductive in our lives.
In my heart and in my mind, family is the absolute most important thing you have in this world. Love conquers all things (even with no romantic connotation) We feed off of each other for all of the previously noted comfort, similarly and most intensely, we feed of of love.
I did not set out today to get preaching or lecture, but I ended up on this soap box so I'm going to ride it out. Treat those you love like every moment you have with them is your last. We hurt the one's we love the most because we are most comfortable with them. We have the security ingrained in our minds that even when we throw hate towards our loved ones, they will return to us in time with the same love. That should be the case. That would truly be the meaning of unconditional love. But, I think, the more important aspect of it is, why throw hate towards anyone. What does it gain for us? (haha suddenly "WAR! What is it good for? Absolutely nothing! starts playing in my head)
Every single time you end a conversation with someone important, make sure they KNOW the are important to you. Speak with them, in good times and in bad, as you would want them to speak to you. You can assume what your own reaction to any situation could be. So often we assume our counterparts reaction and we react based on that assumption. It isn't worth it.
What's worth it is taking the time out of your day to tell your child that you are proud of them. What's worth it is sacrificing the few minutes it would take to call your best friend just to say hello. What's worth it is while you think of your spouse throughout the day, stop, and take a moment to let them know you were thinking of them. With modern technology, a simple I love you can be said in under 2 seconds with a few pressed buttons. What's worth it is not worrying about the new TV you want and spend that money making memories with your grand kids. What's worth it is turning off the computer long enough to hear your 6 year old's incredible story about a cobra he learned new skills from (their imaginations alone will humble you).
Republican or Democrat. Catholic or Jewish. Doctor, lawyer, teacher, nurse, secretary, cashier, waitress. Home owner, renter, or homeless. The President of The United States of America or the man on death row. Every single person deserves respect that you would want. Every single person deserves answers to the questions you have. We all bleed red. We all drink water and eat food. We all need love. We all need encouragement.
That's how we keep ourselves as well as our loved ones out of those dark places and far away from the black hole that so easily sucks us in. We cannot change anyone else in this world but ourselves. The most effortless yet most crucial change is how we treat each other. Change comes from positive action.
Praise, criticize, praise. I don't even like the word "criticize". I'd rather use motivate. Praise, motivate, praise. That will get you far in this world!
The 90:10 rule is something I came up with on my own (of course there are various versions of this idea) to justify my typical womanly mood swings, but realized that it helps greatly in times of great stress. I allow myself to be that dark, negative, emotional victim (if those words are even a good description) for about 10% of the time. The remaining 90% of the time my mind just naturally goes towards the positive.
I came up with this idea within these past few years. Having a child and just trying to help them through their tantrums gives you great insight. Obviously as you get older life does get harder. For myself, these health issues just keep snowballing as I get older as well. At times it is completely overwhelming. I have had 2 relatives take their own lives as well as many others use drugs or even lose their life to drugs. My own personal thought on those matters is that it was a matter of the heart and mind not being able to find balance, and that is how those individuals coped with their struggles.
One relative in particular that took her own life was extremely traumatic for me. She was my aunt. I had always seen her as a beautiful, strong, independent woman. I thought she was smart. I thought she was incredibly resilient. I thought she knew how to take care of herself even if no one else would. I really looked up to her and admired her as well as loved her so.
When I got the news of what had happened I was shocked! I knew she had issues just like any other woman. She had two kids, was a divorcee, and worked as a nurse. As a child I was not in on great details of her life nor do they need to be shared here, but I knew she had the same insecurities many woman do. I could not believe that she thought death would be better than continuing to live on this earth. I was devastated.
I remember thinking over and over, "Didn't she know how much I loved her? Didn't she know how bad this would hurt me? How could she do this to me?" The devastation turned into anger. I thought she should have reached out to me. If she had I would have told her all those things I thought about her. If she had I would have told her how much I loved her. I thought she knew, but maybe I didn't say it enough. I was angry at the pain she caused the rest of the family. Then, I was angry at my family, wondering if they had not shown her enough of their love and need for her.
As I got older, I realized the reality behind a situation like that is far beyond anything I could ever comprehend. It took a lot of religious talks, faith, philosophical talks, and just plain life lessons to know that she was doing what she thought was best for her at that time. At some point in every one's life, you have to do what is best for you. No one can decide what is best for you, but yourself. That doesn't mean I have to agree with it or understand it; that only means that every person has an untold story. Life is based on survival. To survive, you must do for you. Short story turned long, her death has taught me a lot.
The most important lesson I learned from her death was to not allow myself to get sucked into the black hole of despair that we all face in life. Not one single person on this earth is immune to tragedy, pain, hurt, or suffering.
My own father died from complications of Type I Diabetes when I was 3 months away from turning 5 years old. He was 35 at the time. Monday (my dark day post) would have been his 60th birthday. That, the death of a parent, is something you never get over. It has been nearly 25 years and it still feels very fresh. The milestones in life are particularly hard; high school graduation, turning 18, turning 21, pregnancy, giving birth, marriage, college graduation, buying a house, etc. I am realizing that it is actually getting harder as I get older because no matter how old you are, you are still your parents' child and look to them for guidance.
These past few years have been increasingly hard in that manner. Although I have had some autoimmune diseases for 15 plus years now, 2008 really began the snowball of the enormity of what I am facing. I had my son in 2005. From the moment I found out I had diabetes, in my head, I would be dead by the time I was 35. I soon came to realize the advances in medicine and the differences in our lifestyles that would most likely save me from what I thought was my own death sentence. As the years passed and the diagnoses kept rolling in, I kept that "medical advances" and "lifestyle differences" in my head consistently to keep myself from that black hole. I certainly thought that once "stability" was reached, I would be in a much better place physically so the emotions would be easier to control. I suppose that was my mind's coping mechanism to get through such traumatic experiences.
I am now 29 years old and 6 months from my 30th birthday. Last fall I was going through the struggles with my digestive system with no clear answers. It was daily torture, and continues to be, but now we have answers and stability. This fall it is these new episodes with my head. (Happy to report my MRI came back normal, neuro appointment next month) Since 2008 and my first visit to the Mayo Clinic I have not gained much back in life other than wisdom and knowledge. By that, I mean my quality of life has decreased and my physical well being is progressively getting worse. (I work hard everyday to slow the progression as much as possible) I am not on my death bed. I do not want anyone to think I am like a terminal cancer patient or even look at myself that way. Life is just difficult with so much to juggle. I am in no way shape or form a victim in this; these are the cards I was dealt.
Feeling like we have never had a complete handle on my body and it's illnesses is frustrating. I have lived for years with the hope that "stability" would bring me to that place where I could then begin to process the emotional side of all that has been thrown at me, and possibly get to a place of peace with it all.
My son will be 7 next month. As I said, I will be 30 in the new year. I do not feel like I am in a better place physically than I was when I was first sent to the Mayo Clinic. I have never expected a magic pill or a cure, just respite. At this point, with one thing after another and one unanswered mystery after another I am becoming increasingly more frightened. There is no way I can prevent my mind from going to that place that focuses on my own dad's death at 35 when I was a child and me, now moving into my 30s, and my young son.
I try to take advantage of every moment I have with him. I do think that is a blessing that comes from the death of my own dad as well as my illnesses; I realized that literally every second counts. Even if I were not chronically ill, tomorrow is never promised.
That is my main theme for this post. So often we get caught up in the moment. It is easy to get caught up in greed, gossip, comparison, status, self righteousness, and so on. The list could go on for days. It is human nature to seek comfort. We use justifications for our actions to ease our minds and make ourselves comfortable. Misery seeks company. A smile is contagious. Keeping up with the Joneses. The grass is always greener on the other side. Blame and shame are some of the easiest crutches we use to seek comfort. So much of this can be counterproductive in our lives.
In my heart and in my mind, family is the absolute most important thing you have in this world. Love conquers all things (even with no romantic connotation) We feed off of each other for all of the previously noted comfort, similarly and most intensely, we feed of of love.
I did not set out today to get preaching or lecture, but I ended up on this soap box so I'm going to ride it out. Treat those you love like every moment you have with them is your last. We hurt the one's we love the most because we are most comfortable with them. We have the security ingrained in our minds that even when we throw hate towards our loved ones, they will return to us in time with the same love. That should be the case. That would truly be the meaning of unconditional love. But, I think, the more important aspect of it is, why throw hate towards anyone. What does it gain for us? (haha suddenly "WAR! What is it good for? Absolutely nothing! starts playing in my head)
Every single time you end a conversation with someone important, make sure they KNOW the are important to you. Speak with them, in good times and in bad, as you would want them to speak to you. You can assume what your own reaction to any situation could be. So often we assume our counterparts reaction and we react based on that assumption. It isn't worth it.
What's worth it is taking the time out of your day to tell your child that you are proud of them. What's worth it is sacrificing the few minutes it would take to call your best friend just to say hello. What's worth it is while you think of your spouse throughout the day, stop, and take a moment to let them know you were thinking of them. With modern technology, a simple I love you can be said in under 2 seconds with a few pressed buttons. What's worth it is not worrying about the new TV you want and spend that money making memories with your grand kids. What's worth it is turning off the computer long enough to hear your 6 year old's incredible story about a cobra he learned new skills from (their imaginations alone will humble you).
Republican or Democrat. Catholic or Jewish. Doctor, lawyer, teacher, nurse, secretary, cashier, waitress. Home owner, renter, or homeless. The President of The United States of America or the man on death row. Every single person deserves respect that you would want. Every single person deserves answers to the questions you have. We all bleed red. We all drink water and eat food. We all need love. We all need encouragement.
That's how we keep ourselves as well as our loved ones out of those dark places and far away from the black hole that so easily sucks us in. We cannot change anyone else in this world but ourselves. The most effortless yet most crucial change is how we treat each other. Change comes from positive action.
Praise, criticize, praise. I don't even like the word "criticize". I'd rather use motivate. Praise, motivate, praise. That will get you far in this world!
Monday, September 24, 2012
An Escape
Today I am letting go of all inhibitions....or the majority of them for this post. I try to stay positive and always look on the bright side of things. I have said over and over, there is no other way to live. We would not not want to live in a world where the cruelty and pain take over the beauty and greatness. In situations where I feel knocked down by all angles, I tend to have a very hard time keeping that positive outlook. Right now is one of those times. Rather than internalizing all these feelings, as I usually do, I am hoping that letting them out here will prevent any lashing out to loved ones that may or may not be misdirected.
For some time now, since the end of August, I have been dealing with this incredible headache and what I can only describe as strange episodes. I do have epilepsy so there is a clear history of seizures. Although, I do not tend to get an "aura" or any indication that a seizure is coming on, I can usually tell if one is imminent in the near future (possibly days or weeks). These episodes have not been seizures, in my completely unprofessional only-a-patient assessment. There are periods of confusion and disorientation. There are sometimes feelings of light headiness, dizziness, or a sensation like the earth has been ripped out from under my feet. Those are all brief, seconds to half a minute at the most. There are some flashing lights, bright lights, painful lights, sometimes along with tunnel vision. The hardest part is the headache. It is unrelenting.
In August my rheumatologist and endocrinologist suggest I talk to a neurologist (which I already have) for some other concerning issues looking more like neuropathy. When I described these most recent episodes, they suggested I get in touch with my neurologist right away and let him know. I did, thinking my seizure medication would only be increased, but instead he prescribed a dose of steroids. My neurologist is very good at making decisions without explaining them to the patient. I had no idea what the steroids were for, only that I was terrified to take them due to my diabetes.
I looked information up online using my symptoms and the steroid treatment he had given me. My research kept leading me to sights about vessel inflammation in the head or brain. The most common cause of this would be migraine but the more serious concern would be an aneurysm. That completely frightened me because I had mentioned the initial episode to my husband and explained to him it felt like something had popped or burst. I tried to push that all out of my head because it would all be too overwhelming to think about. Plus, I am in the care of professionals, so let them do their job and I will do mine.
I finished out the bout of steroid meds with little to no relief whatsoever. I waited it out a few more days. I tend to avoid taking any over the counter meds because I have so many prescribed, why add more to the mess? With no relief in sight, another episode happened. By that I mean, I had been having them throughout this period of time, but this particular episode was similar to the very first in late August. I was very disoriented. My head was throbbing, and these lights would not leave my vision no matter what I tried. I called my primary physician and she sent me to the ER.
My husband rushed home from work and took me to our local ER. There I was treated as if I had a complex partial seizure rebounded into a migraine. I was given some medication for nausea as well as a muscle relaxer. Within a few hours, I was let go as the pain let up. All I wanted was to be at home with my son.
The next morning I woke up feeling slightly better, but extremely exhausted. By about mid morning the headache had returned. This is into the third week. After a few days debating whether I should call my neurologist (he is 3 hours away), call my primary physician (I am so tired of doctors), or try to self treat I finally called my primary. Accidentally, I dialed her personal cell. That turned out to be just what needed to happen because I did get to talk to her directly, rather than through a nurse or receptionist. Initially, the week or so before when I was sent to the ER it was in hopes of getting an MRI or CT scan while one of these episodes was occurring. That never happened. I was only medicated.
My primary decided she would order the MRI she initially thought we needed, but in the meantime she prescribed a muscle relaxer to ease the pain and allow me to get through my days. I am certainly not a pill seeker and pain medication is something I cannot take.
Today, exactly one month after the initial bad episode and the start of this terrible bad dream I went in for the MRI. Unfortunately, some blood work needed to be done that had not been ordered so the MRI was done, just not the exact type my doctor wanted. Frustrating, but I am hoping they find something (small and easy). I am trying to not think too much into all of this. Compartmentalize and let the professionals handle it.
In the meantime, I am still a mom and a wife. My inlaws' side of the family had a family crisis at the same time, with an aunt being placed in ICU. It was terribly frightening and tragic, but I am glad to report she is doing well now. I can tell you she means an awful lot to myself, my husband, and my son so that wore us down pretty badly. She was so ill, I felt like I had no place to complain or even show that these episodes and doctor visits/ conversations were frightening me. I also wanted to be sure I was there 100% for those closest to her. If I could not do anything to help, the least I could do was the tedious tasks that life still throws at us all in times of crisis.
Now, as I said, our aunt is out of danger and in the stages of recovery. She is doing really well. We have fallen into a routine for school, tae kwon do, and soccer for our six year old. My husband's job seems to have stabilized his schedule a little bit more so that helps all around as well. I even said to him this morning how happy I was that things were seeming to smooth out so maybe I can get back to feeling a little more like myself soon.
The problem I am having; and, let me be honest, I have struggled with this from day one with all these health issues, is a terrible fear of abandonment. I talk a lot about feeling isolated. I feel isolated by my limitations as well as the general misunderstanding of my situation. I am not very comfortable being open with people about it. To me it sounds so out there and inconceivable, I can't imagine what others must think if I even give them a glimpse of how my body works. I know for a fact that if I heard a woman telling me this story in casual conversation at the park for example, I would think she had some serious mental issues and was seeking attention. I would blow it off, and possibly avoid her if I saw her again. That would have been me 5 years ago, before I realized real people deal with real issues all the time even if it does not show on the outside.
I know I am loved. I know I have a good support system in the small circle of friends I have along with my husband, my son, and our extended family. I know in many different situations there would be someone I could reach out to if I needed. I know when things get tough, most try to show their support even with distance between us and hectic schedules. The thing is, to me, it feels almost forced.
I, like all of them, love them so much. The people I surround myself with and keep close are there for a reason and that is because I want them around. I care for them. I think of them often. They make me a better person some how, and that makes me appreciate them. I assume the feelings are mutual. If not identical, there are equally good reasons they have love in their hearts for me. For that, I am grateful.
Everyday that I wake up and face another day, I think of how nice it would be to not have to worry about the things I worry about on a daily basis. We all have worries, but I remember the worries I had before these illnesses and the drastic change my life has taken. If it were up to me, I would not change a thing because I have learned so much from this all. I believe it has definitely made me more open, understanding, compassionate, and appreciative. But, if it were up to me, I would walk away.
I would walk away from all the health struggles. I would walk away from all the limitations it has placed on my life as well as my family's life. I would walk away from the sacrifices I have had to make to accommodate theses illnesses. So, in my head, I do not see why anyone else would not want to do the same thing.
My 20s were stolen from me by diseases that were out of my control. I did not get to turn 21 and go out for a celebratory drink. I do not get to go to a nice restaurant for a date. I don't even get to go to a restaurant for a random 20s birthday. I do not get to go to bars or clubs. (None of which I was interested in before, but I'd like the choice for myself)
My son is now six and starting sports and making friends. He does not like to leave me very much because he worries about me. He will only stay with one grandma over night, no one else.....and she lives 3/4 mile down the street. He is in tae kwon do, but the tournaments are 3 hours away. I have trouble traveling and without a job, we do not have the income to go to these tournaments.
My husband is only 30. It is football season. I love football, most sports really. I love to watch sports with my husband. But, he is 30. Every now and then he wants to go to a sports bar and watch the games or have a friend over to watch the games. He forfeits nights out with his friends to spend nights in with me, even though I am usually asleep by the time our six year old is in bed. He withholds invitations for his friends to come to our house to watch the games because he knows it will be too much on me.
These illnesses have taken so much away from us. They have taught us to be better parents and better spouses. They have taught us to be better people. We listen to one another and think of one another more so than most young couples. We communicate on a level even older generations have not mastered. We have our own share of problems, but we have so many good things. I just feel like these illnesses are taking too much away from everyone around me!
I want my son to have a typical childhood and enjoy more time with his friends doing kid things. I want my husband to not worry about me and our finances so much. I want him to be able to spend Monday Night Football out with his best friend for a drink and some unnecessary vulgar talk amongst men. I want my mother in law not to have to call every single day when I am alone to make sure everything is OK so she can go about her day. I want my friends to not worry about bothering me when I am tired, or avoiding inviting me some place because they know I will not go. I want all of these things. That is not my life though.
This is my life. I am happy in it. I am learning to accept these difficult things. I am OK with missing out on so much. I would prefer to spend every waking moment with my son or my husband. I would love nothing more than for them to be infinitely happy and just know how much I love them. But I need rest. Any moment I have that is not obligated to a mommy duty or a wifely duty, I want to read a book in bed, or watch trashy television, or sleep. I do everything I physically can in a day, and beyond that, I just want rest. Sometimes even talking exhausts me.
I do not feel that anyone around me really enjoys any of that. I appreciate them giving up their time and energy to be with me. I appreciate all the sacrifices they all make. I appreciate, especially, the things they do to show me they are thinking of me even when I am not around. I appreciate the fact that they are all still here, even through these tough years. I just do not believe that they want to be. I believe they want to live the lives they are capable of living. And that makes me feel AWFUL.
I feel so guilty about it all. I feel guilty for my son. I feel guilty for my friends and extended family. Mostly, I feel guilty that my husband's 20s were stolen from him as well. When he should have been out with the boys, he was nursing me back to health. When he should have been finishing out college, he was doing clinicals for a vocation and working full time while I was at the Mayo Clinic. While he should be using his vacation pay to take an actual vacation, he saves them all up for my out of town appointments.
I am constantly trying my best to make those around me know how much I appreciate them and love them. I do not feel it is enough for what they go through. I am in constant fear that one day they will all throw in the towel, and go lead the lives they want to lead. Why would anyone want to deal with fear, sadness, isolation, and boredom when they are capable of so much more than what I have to offer?
And why can these feelings of guilt and fear of losing it all not go away?! They eat at me day and night. I am so sensitive to any comment or facial expression, I can turn anything anyone does into something that is somehow my fault. I must have caused these problems. I must have made myself sick. I must have done something to cause it all. I must like the negative attention. I must be crazy and everyone just caters to my crazy.
I want to be better so that anyone who is around me, enjoys being around me. I want to be better so that I do not question my own sanity. I want to be better so that I do not question my own abilities. And most importantly, I want to be better so my son does not have to see his mom go through this and me having no idea how to handle it gracefully. I hope he learns positive lessons. I hope he does not resent me one day for all that I cannot give him. And I truly hope that those around me will decide to live the lives they want to live whether or not it includes me with all this ridiculous baggage.
For some time now, since the end of August, I have been dealing with this incredible headache and what I can only describe as strange episodes. I do have epilepsy so there is a clear history of seizures. Although, I do not tend to get an "aura" or any indication that a seizure is coming on, I can usually tell if one is imminent in the near future (possibly days or weeks). These episodes have not been seizures, in my completely unprofessional only-a-patient assessment. There are periods of confusion and disorientation. There are sometimes feelings of light headiness, dizziness, or a sensation like the earth has been ripped out from under my feet. Those are all brief, seconds to half a minute at the most. There are some flashing lights, bright lights, painful lights, sometimes along with tunnel vision. The hardest part is the headache. It is unrelenting.
In August my rheumatologist and endocrinologist suggest I talk to a neurologist (which I already have) for some other concerning issues looking more like neuropathy. When I described these most recent episodes, they suggested I get in touch with my neurologist right away and let him know. I did, thinking my seizure medication would only be increased, but instead he prescribed a dose of steroids. My neurologist is very good at making decisions without explaining them to the patient. I had no idea what the steroids were for, only that I was terrified to take them due to my diabetes.
I looked information up online using my symptoms and the steroid treatment he had given me. My research kept leading me to sights about vessel inflammation in the head or brain. The most common cause of this would be migraine but the more serious concern would be an aneurysm. That completely frightened me because I had mentioned the initial episode to my husband and explained to him it felt like something had popped or burst. I tried to push that all out of my head because it would all be too overwhelming to think about. Plus, I am in the care of professionals, so let them do their job and I will do mine.
I finished out the bout of steroid meds with little to no relief whatsoever. I waited it out a few more days. I tend to avoid taking any over the counter meds because I have so many prescribed, why add more to the mess? With no relief in sight, another episode happened. By that I mean, I had been having them throughout this period of time, but this particular episode was similar to the very first in late August. I was very disoriented. My head was throbbing, and these lights would not leave my vision no matter what I tried. I called my primary physician and she sent me to the ER.
My husband rushed home from work and took me to our local ER. There I was treated as if I had a complex partial seizure rebounded into a migraine. I was given some medication for nausea as well as a muscle relaxer. Within a few hours, I was let go as the pain let up. All I wanted was to be at home with my son.
The next morning I woke up feeling slightly better, but extremely exhausted. By about mid morning the headache had returned. This is into the third week. After a few days debating whether I should call my neurologist (he is 3 hours away), call my primary physician (I am so tired of doctors), or try to self treat I finally called my primary. Accidentally, I dialed her personal cell. That turned out to be just what needed to happen because I did get to talk to her directly, rather than through a nurse or receptionist. Initially, the week or so before when I was sent to the ER it was in hopes of getting an MRI or CT scan while one of these episodes was occurring. That never happened. I was only medicated.
My primary decided she would order the MRI she initially thought we needed, but in the meantime she prescribed a muscle relaxer to ease the pain and allow me to get through my days. I am certainly not a pill seeker and pain medication is something I cannot take.
Today, exactly one month after the initial bad episode and the start of this terrible bad dream I went in for the MRI. Unfortunately, some blood work needed to be done that had not been ordered so the MRI was done, just not the exact type my doctor wanted. Frustrating, but I am hoping they find something (small and easy). I am trying to not think too much into all of this. Compartmentalize and let the professionals handle it.
In the meantime, I am still a mom and a wife. My inlaws' side of the family had a family crisis at the same time, with an aunt being placed in ICU. It was terribly frightening and tragic, but I am glad to report she is doing well now. I can tell you she means an awful lot to myself, my husband, and my son so that wore us down pretty badly. She was so ill, I felt like I had no place to complain or even show that these episodes and doctor visits/ conversations were frightening me. I also wanted to be sure I was there 100% for those closest to her. If I could not do anything to help, the least I could do was the tedious tasks that life still throws at us all in times of crisis.
Now, as I said, our aunt is out of danger and in the stages of recovery. She is doing really well. We have fallen into a routine for school, tae kwon do, and soccer for our six year old. My husband's job seems to have stabilized his schedule a little bit more so that helps all around as well. I even said to him this morning how happy I was that things were seeming to smooth out so maybe I can get back to feeling a little more like myself soon.
The problem I am having; and, let me be honest, I have struggled with this from day one with all these health issues, is a terrible fear of abandonment. I talk a lot about feeling isolated. I feel isolated by my limitations as well as the general misunderstanding of my situation. I am not very comfortable being open with people about it. To me it sounds so out there and inconceivable, I can't imagine what others must think if I even give them a glimpse of how my body works. I know for a fact that if I heard a woman telling me this story in casual conversation at the park for example, I would think she had some serious mental issues and was seeking attention. I would blow it off, and possibly avoid her if I saw her again. That would have been me 5 years ago, before I realized real people deal with real issues all the time even if it does not show on the outside.
I know I am loved. I know I have a good support system in the small circle of friends I have along with my husband, my son, and our extended family. I know in many different situations there would be someone I could reach out to if I needed. I know when things get tough, most try to show their support even with distance between us and hectic schedules. The thing is, to me, it feels almost forced.
I, like all of them, love them so much. The people I surround myself with and keep close are there for a reason and that is because I want them around. I care for them. I think of them often. They make me a better person some how, and that makes me appreciate them. I assume the feelings are mutual. If not identical, there are equally good reasons they have love in their hearts for me. For that, I am grateful.
Everyday that I wake up and face another day, I think of how nice it would be to not have to worry about the things I worry about on a daily basis. We all have worries, but I remember the worries I had before these illnesses and the drastic change my life has taken. If it were up to me, I would not change a thing because I have learned so much from this all. I believe it has definitely made me more open, understanding, compassionate, and appreciative. But, if it were up to me, I would walk away.
I would walk away from all the health struggles. I would walk away from all the limitations it has placed on my life as well as my family's life. I would walk away from the sacrifices I have had to make to accommodate theses illnesses. So, in my head, I do not see why anyone else would not want to do the same thing.
My 20s were stolen from me by diseases that were out of my control. I did not get to turn 21 and go out for a celebratory drink. I do not get to go to a nice restaurant for a date. I don't even get to go to a restaurant for a random 20s birthday. I do not get to go to bars or clubs. (None of which I was interested in before, but I'd like the choice for myself)
My son is now six and starting sports and making friends. He does not like to leave me very much because he worries about me. He will only stay with one grandma over night, no one else.....and she lives 3/4 mile down the street. He is in tae kwon do, but the tournaments are 3 hours away. I have trouble traveling and without a job, we do not have the income to go to these tournaments.
My husband is only 30. It is football season. I love football, most sports really. I love to watch sports with my husband. But, he is 30. Every now and then he wants to go to a sports bar and watch the games or have a friend over to watch the games. He forfeits nights out with his friends to spend nights in with me, even though I am usually asleep by the time our six year old is in bed. He withholds invitations for his friends to come to our house to watch the games because he knows it will be too much on me.
These illnesses have taken so much away from us. They have taught us to be better parents and better spouses. They have taught us to be better people. We listen to one another and think of one another more so than most young couples. We communicate on a level even older generations have not mastered. We have our own share of problems, but we have so many good things. I just feel like these illnesses are taking too much away from everyone around me!
I want my son to have a typical childhood and enjoy more time with his friends doing kid things. I want my husband to not worry about me and our finances so much. I want him to be able to spend Monday Night Football out with his best friend for a drink and some unnecessary vulgar talk amongst men. I want my mother in law not to have to call every single day when I am alone to make sure everything is OK so she can go about her day. I want my friends to not worry about bothering me when I am tired, or avoiding inviting me some place because they know I will not go. I want all of these things. That is not my life though.
This is my life. I am happy in it. I am learning to accept these difficult things. I am OK with missing out on so much. I would prefer to spend every waking moment with my son or my husband. I would love nothing more than for them to be infinitely happy and just know how much I love them. But I need rest. Any moment I have that is not obligated to a mommy duty or a wifely duty, I want to read a book in bed, or watch trashy television, or sleep. I do everything I physically can in a day, and beyond that, I just want rest. Sometimes even talking exhausts me.
I do not feel that anyone around me really enjoys any of that. I appreciate them giving up their time and energy to be with me. I appreciate all the sacrifices they all make. I appreciate, especially, the things they do to show me they are thinking of me even when I am not around. I appreciate the fact that they are all still here, even through these tough years. I just do not believe that they want to be. I believe they want to live the lives they are capable of living. And that makes me feel AWFUL.
I feel so guilty about it all. I feel guilty for my son. I feel guilty for my friends and extended family. Mostly, I feel guilty that my husband's 20s were stolen from him as well. When he should have been out with the boys, he was nursing me back to health. When he should have been finishing out college, he was doing clinicals for a vocation and working full time while I was at the Mayo Clinic. While he should be using his vacation pay to take an actual vacation, he saves them all up for my out of town appointments.
I am constantly trying my best to make those around me know how much I appreciate them and love them. I do not feel it is enough for what they go through. I am in constant fear that one day they will all throw in the towel, and go lead the lives they want to lead. Why would anyone want to deal with fear, sadness, isolation, and boredom when they are capable of so much more than what I have to offer?
And why can these feelings of guilt and fear of losing it all not go away?! They eat at me day and night. I am so sensitive to any comment or facial expression, I can turn anything anyone does into something that is somehow my fault. I must have caused these problems. I must have made myself sick. I must have done something to cause it all. I must like the negative attention. I must be crazy and everyone just caters to my crazy.
I want to be better so that anyone who is around me, enjoys being around me. I want to be better so that I do not question my own sanity. I want to be better so that I do not question my own abilities. And most importantly, I want to be better so my son does not have to see his mom go through this and me having no idea how to handle it gracefully. I hope he learns positive lessons. I hope he does not resent me one day for all that I cannot give him. And I truly hope that those around me will decide to live the lives they want to live whether or not it includes me with all this ridiculous baggage.
Monday, September 17, 2012
Open
Nearly 6 weeks into school and I am just getting back to blogging. If I were my own follower, I would be disappointed with myself for being so erratic about posts. I tell myself every time I add a new post that I will be more diligent about making this more consistent and easy to follow. So far, I have failed at my attempts to better my posts.
On a daily basis I think, "What topic could I make a new post about?" Honestly, I have zillions of ideas running through my head all the time. I started this blog to share my daily joys and struggles of dealing with multiple autoimmune diseases. It was prompted by all the questions from family and friends, even strangers, about what I go through. I felt like I was a recorded cassette tape replaying over and over. I also felt like when I didn't want to replay the tape and would pass out condensed versions of my story I was judged. We are all judged, but I felt like I had to continually defend myself. On the outside I look like a seemingly normal late 20s girl so imagine the looks I would get when I would have to turn down an invitation to a gathering or decline helping out my son's class on a field trip.
Those closest to me would compliment my strength. They would compliment my knowledge of my own situation. So many patients rely solely on the professionals to handle their conditions whereas I, on the other hand, look at the professionals as human beings. All human beings make mistakes. All human beings overlook things, including myself. I have always believed this needs to be a team effort and I have to be fully invested in my own health. To be invested you must know what is going on. With all of that said, I have been told numerous times to write a book. A book about my experiences. A book about how I wake up everyday and decide to continue fighting. A book about how twisted the government is....about how twisted the health care system is....about how easily we can all get lost in the shuffle.
Well, I am not a writer. I have never thought of myself as a writer. English and literature were my least favorite subjects in school. So that whole idea seemed not only ridiculous, but impossible. My solution- start a blog. I knew that the best way to write an essay, say for a college course, was by starting with an outline. Due to my lack of confidence in the area of writing, a outline began looking about as successful as a book. A blog, however, is like a journal. My mind would like to keep it in the confines of a journal, but the reality is, it is a journal for the entire world to view (if they choose). This, I thought, will solve two dilemmas. One, in time, it can serve as an outline for a potential book....if I ever decide to write one or think one is warranted. And two, it can serve as my defense. I figured, I will no longer feel the need to defend myself because all the information is now out there. It is up to the "judger" or "questioner" to seek it out if it is that important for them to know. Kill two birds with one stone and pressure is taken off of my shoulders.
So far, I feel like it has been meeting both my original goals. It also has acted as a journal, allowing me to release thoughts and feelings I would not normally openly talk about. Here's where I have run into a problem.
I am a pretty positive, strong, and resilient person. I tend to see the glass as half full. I usually find peace in difficult situations knowing there is a reason for everything. If there is bad, there MUST be good. No bad situation is completely bad. I believe the tough situations are tools for making you stronger. I prefer to see the good in people. Behind every smile or grimace is a story I don't know and probably wouldn't understand so who am I to cast judgement? If you always give it your best than you will never have regrets. I also believe that every person deserves respect. We all have feelings, so respect what you do not understand. Educate yourself, but knowledge is not equivalent to your place in the world. Alas, I am human. The down times get me.
I have been finding that the easiest things to write about are the hardest things to talk about. When I say 'the hardest things to talk about' I don't necessarily mean that it is difficult for me to open my mouth and talk about it. I mean, it starts to feel like there are certain things no one around me wants to listen to. That is the feeling I get. My mind is telling me, it is not so much that they do not want to hear these things, they may not understand or even fully grasp where it is coming from. Or, I imagine if I were on the other side of my life. If I were my husband, or my sister, or my best friend and every time I contacted myself all I heard was what went wrong today, what the doctors are planning next, how this med affects me or that one does. That symptom is gone, but now I have this or I'm exhausted (again). I would get so tired of myself. So, I force myself to try my hardest not to acknowledge my physical struggle. I try not to burden those around me with so much negative so that they will continue to want to come around me. Then, I find I have nothing to talk about.
I am disabled. I have been legally since 2009. I officially gave into the label and allowed myself to slow down and actually quit work in 2011. I have one 6 year old little boy. We live in a small town in southeastern New Mexico that is definitely off the beaten track. I have very little extra curricular activities outside of my home because just maintaining my health and my home are about all I can fit on my plate. My son is the main focus of my life. As long as I am on this earth and have the gift of being a stay at home mom, I want to make sure he feels like he is safe, loved, and secure.
I was a college student before all of this consumed my life. I started college with the intention of majoring in psychology and working in abnormal psychology. That was inspired by an aunt my husband has who was born with down syndrome. She is amazing and I wanted nothing more than to deal with that everyday for the rest of my life. In college I was diagnosed with Type I Diabetes and my plan changed a little. I still wanted the psychology degree because I knew it would be immensely helpful for someone with a chronic illness, but now I wanted to be a diabetic educator.
Before being diagnosed, I thought I was a fairly healthy person. My own father passed away due to complications of diabetes when I was 4 almost 5 years old. I had spent my life trying to avoid the disease. I was an athlete. I stayed clear of fried foods and only had sugary items moderately. I never drank juice or soda unless it was diet. Little did I know!! My first appointment with my diabetic educator floored me. There was so little I knew about food and how it affects our bodies. With that, I was so overwhelmed by the lifestyle changes I would have to make. Here I was thinking I was in a good position to treat this disease and I had no idea at all. I thought about people who had never been exposed to the disease and how gut wrenching it must be for them to have to learn to deal with a diagnosis like mine. I wanted to be a diabetic educator and possibly a patient advocate.
I changed majors and started working on courses for nursing. My plan then was to get my RN as well as a BS in psychology, thinking they would go hand in hand with my ultimate goal. Along the way, life intervened and I had my son. I needed stable money and benefits to support a child, and I was not going to marry my high school boyfriend based off a pregnancy. I quickly bundled the credits I had and with a few additional courses completed an Associates Degree in Liberal Arts. Then I moved on to a vocational school to become a medical assistant. My thought was to work as an MA while my son was a infant and toddler, then finish out my double major once he started kindergarten.
I did just that. I was feeling so accomplished, so strong, and yet so worn down. I kept telling myself it was all the work I was putting in, but I had to keep going to reach my goal. Once I got to where I wanted to be, things would slow down a bit and I could enjoy it. I had no idea all this was just below the surface.
It got to the point where it was so hard physically, I knew something had to give. By then (about 2 years into it) I was married to my high school sweetheart (for love not pregnancy- I'm strong headed haha) and we decided to move home to our small town to have the support of our friends and family as well as the slower paced life. My son was 2 so I was still waiting for him to start school before I went back to college to finish out my goals. I worked as an MA for 11 months before everything erupted.
I absolutely loved every aspect of my job. It was only more invigorating thinking of where I would be going and what I would be learning in the years to come. I rarely dreaded going to work. I would get tired, of course, and every job has its downfalls. But this was my passion. I fought tooth and nail with every fiber of my being to never let it go. Alas, God had other plans.
So here we are 4 years later. I have 7 new diagnoses under my belt, a pharmacy on my nightstand, far more symptoms, legally disabled, but blessed to be a stay at home mom. We bought a house in our lovely little town that owns my heart. My husband also changed his path. His ultimate goal of becoming a pharmacist was halted, but he became a pharmacy tech which allows him to work within his passion even if it is not what he originally set out to do. (Really, how many people end up doing what they planned?! not many) We have a similar life to what we set out to achieve all those years ago when we packed our bags and headed to college, but it is a life so much sweeter than either of us imagined.
And that brings me back to this blog. We have so much to be thankful for and so many things happen every day that make us smile. With all this hardship we have to face, we still have so much joy. For some reason, though, all I want to do when I get to my blog is pour my heart out about all the symptoms I don't tell those around me. All I want to do is break down and tell you how hard this all is and how angry I am when no one around me seems to understand. All I want to do is report all the things the doctors have told me. I want to talk about how it frightens me and the dark places it sends me. I want to complain so badly!!
What holds me back you ask? I have been asked that by a therapist once or twice, and my answer is always the same. WHY?! What good does complaining do other than perpetuate the negative thoughts? I am afraid if I open up and allow myself to do that it will be like a floodgate that I cannot control. Not only that, I hate when I hear people complain about things when I am looking at their situation longingly. I wonder, do they not see the whole picture? Can't they see this could be a good thing? Or what about the parts of it they are not looking at? I guess in that sense, I do judge people. Do I see it as a weakness? Possibly. Do I see it at an attention getter? Absolutely! And that is the kind of attention I do not want.
I am not in search of sympathy. I feel like sympathy only gives me the allowance to feel sorry for myself. And, really, what kind of a life would I lead if I was constantly feeling self pity? I also don't need the pity. Do you know how many wonderful things I have going on? I have an amazing husband who is also an amazing father. I have a beautiful son with a beautiful soul. We have a roof over a heads, food on our table, and a steady paycheck. We may not be wealthy or even super comfortable, but we are taken care of. I still have my mobility. Other than an insulin pump I am not connected to any device throughout the day. I am mostly independent. Only on bad days does someone absolutely have to check in on me. We live in a nice town and have a good support system. I have an amazing group of friends. The sun rises every morning. No need for pity or self pity in this life.
The attention I seek with this blog is knowledge....guidance....perspective. In the position I am in it is so easy to get isolated. Not only am I already an introvert, but there is so much I feel no one will understand or want to hear. Not only do my limitations isolate me from gatherings for a number of different reasons, but my fear of being judged keeps me isolated. The misunderstandings about my situation seem to only overwhelm me. I find peace in knowing that President John F. Kennedy dealt with many of the issues I have, but he is no longer with us.
I have never met or even spoken with anyone who deals with APS Type 2 or any of the underlying autoimmune diseases. In the time of JFK medicine is not what it is today so he was looked at in a completely different light. He also had money. A great deal of money can aid in disguising a disease or getting exceptional treatment. I am amazed at the work he was able to do. I am astonished at the stress level he was able to endure. I have so many questions, and I look for a role model. It always feels a little more comfortable to walk a path someone else has forged.
With that I will end today. I end with the hope that someone out there will connect. I end with the hope that my own heart and mind will allow me to open up enough to heal inside but not enough to open floodgates. I end with the hope that the constant feeling of uncertainty is replaced with peace of mind knowing it will all be OK, even if I do not know how the story will go.
On a daily basis I think, "What topic could I make a new post about?" Honestly, I have zillions of ideas running through my head all the time. I started this blog to share my daily joys and struggles of dealing with multiple autoimmune diseases. It was prompted by all the questions from family and friends, even strangers, about what I go through. I felt like I was a recorded cassette tape replaying over and over. I also felt like when I didn't want to replay the tape and would pass out condensed versions of my story I was judged. We are all judged, but I felt like I had to continually defend myself. On the outside I look like a seemingly normal late 20s girl so imagine the looks I would get when I would have to turn down an invitation to a gathering or decline helping out my son's class on a field trip.
Those closest to me would compliment my strength. They would compliment my knowledge of my own situation. So many patients rely solely on the professionals to handle their conditions whereas I, on the other hand, look at the professionals as human beings. All human beings make mistakes. All human beings overlook things, including myself. I have always believed this needs to be a team effort and I have to be fully invested in my own health. To be invested you must know what is going on. With all of that said, I have been told numerous times to write a book. A book about my experiences. A book about how I wake up everyday and decide to continue fighting. A book about how twisted the government is....about how twisted the health care system is....about how easily we can all get lost in the shuffle.
Well, I am not a writer. I have never thought of myself as a writer. English and literature were my least favorite subjects in school. So that whole idea seemed not only ridiculous, but impossible. My solution- start a blog. I knew that the best way to write an essay, say for a college course, was by starting with an outline. Due to my lack of confidence in the area of writing, a outline began looking about as successful as a book. A blog, however, is like a journal. My mind would like to keep it in the confines of a journal, but the reality is, it is a journal for the entire world to view (if they choose). This, I thought, will solve two dilemmas. One, in time, it can serve as an outline for a potential book....if I ever decide to write one or think one is warranted. And two, it can serve as my defense. I figured, I will no longer feel the need to defend myself because all the information is now out there. It is up to the "judger" or "questioner" to seek it out if it is that important for them to know. Kill two birds with one stone and pressure is taken off of my shoulders.
So far, I feel like it has been meeting both my original goals. It also has acted as a journal, allowing me to release thoughts and feelings I would not normally openly talk about. Here's where I have run into a problem.
I am a pretty positive, strong, and resilient person. I tend to see the glass as half full. I usually find peace in difficult situations knowing there is a reason for everything. If there is bad, there MUST be good. No bad situation is completely bad. I believe the tough situations are tools for making you stronger. I prefer to see the good in people. Behind every smile or grimace is a story I don't know and probably wouldn't understand so who am I to cast judgement? If you always give it your best than you will never have regrets. I also believe that every person deserves respect. We all have feelings, so respect what you do not understand. Educate yourself, but knowledge is not equivalent to your place in the world. Alas, I am human. The down times get me.
I have been finding that the easiest things to write about are the hardest things to talk about. When I say 'the hardest things to talk about' I don't necessarily mean that it is difficult for me to open my mouth and talk about it. I mean, it starts to feel like there are certain things no one around me wants to listen to. That is the feeling I get. My mind is telling me, it is not so much that they do not want to hear these things, they may not understand or even fully grasp where it is coming from. Or, I imagine if I were on the other side of my life. If I were my husband, or my sister, or my best friend and every time I contacted myself all I heard was what went wrong today, what the doctors are planning next, how this med affects me or that one does. That symptom is gone, but now I have this or I'm exhausted (again). I would get so tired of myself. So, I force myself to try my hardest not to acknowledge my physical struggle. I try not to burden those around me with so much negative so that they will continue to want to come around me. Then, I find I have nothing to talk about.
I am disabled. I have been legally since 2009. I officially gave into the label and allowed myself to slow down and actually quit work in 2011. I have one 6 year old little boy. We live in a small town in southeastern New Mexico that is definitely off the beaten track. I have very little extra curricular activities outside of my home because just maintaining my health and my home are about all I can fit on my plate. My son is the main focus of my life. As long as I am on this earth and have the gift of being a stay at home mom, I want to make sure he feels like he is safe, loved, and secure.
I was a college student before all of this consumed my life. I started college with the intention of majoring in psychology and working in abnormal psychology. That was inspired by an aunt my husband has who was born with down syndrome. She is amazing and I wanted nothing more than to deal with that everyday for the rest of my life. In college I was diagnosed with Type I Diabetes and my plan changed a little. I still wanted the psychology degree because I knew it would be immensely helpful for someone with a chronic illness, but now I wanted to be a diabetic educator.
Before being diagnosed, I thought I was a fairly healthy person. My own father passed away due to complications of diabetes when I was 4 almost 5 years old. I had spent my life trying to avoid the disease. I was an athlete. I stayed clear of fried foods and only had sugary items moderately. I never drank juice or soda unless it was diet. Little did I know!! My first appointment with my diabetic educator floored me. There was so little I knew about food and how it affects our bodies. With that, I was so overwhelmed by the lifestyle changes I would have to make. Here I was thinking I was in a good position to treat this disease and I had no idea at all. I thought about people who had never been exposed to the disease and how gut wrenching it must be for them to have to learn to deal with a diagnosis like mine. I wanted to be a diabetic educator and possibly a patient advocate.
I changed majors and started working on courses for nursing. My plan then was to get my RN as well as a BS in psychology, thinking they would go hand in hand with my ultimate goal. Along the way, life intervened and I had my son. I needed stable money and benefits to support a child, and I was not going to marry my high school boyfriend based off a pregnancy. I quickly bundled the credits I had and with a few additional courses completed an Associates Degree in Liberal Arts. Then I moved on to a vocational school to become a medical assistant. My thought was to work as an MA while my son was a infant and toddler, then finish out my double major once he started kindergarten.
I did just that. I was feeling so accomplished, so strong, and yet so worn down. I kept telling myself it was all the work I was putting in, but I had to keep going to reach my goal. Once I got to where I wanted to be, things would slow down a bit and I could enjoy it. I had no idea all this was just below the surface.
It got to the point where it was so hard physically, I knew something had to give. By then (about 2 years into it) I was married to my high school sweetheart (for love not pregnancy- I'm strong headed haha) and we decided to move home to our small town to have the support of our friends and family as well as the slower paced life. My son was 2 so I was still waiting for him to start school before I went back to college to finish out my goals. I worked as an MA for 11 months before everything erupted.
I absolutely loved every aspect of my job. It was only more invigorating thinking of where I would be going and what I would be learning in the years to come. I rarely dreaded going to work. I would get tired, of course, and every job has its downfalls. But this was my passion. I fought tooth and nail with every fiber of my being to never let it go. Alas, God had other plans.
So here we are 4 years later. I have 7 new diagnoses under my belt, a pharmacy on my nightstand, far more symptoms, legally disabled, but blessed to be a stay at home mom. We bought a house in our lovely little town that owns my heart. My husband also changed his path. His ultimate goal of becoming a pharmacist was halted, but he became a pharmacy tech which allows him to work within his passion even if it is not what he originally set out to do. (Really, how many people end up doing what they planned?! not many) We have a similar life to what we set out to achieve all those years ago when we packed our bags and headed to college, but it is a life so much sweeter than either of us imagined.
And that brings me back to this blog. We have so much to be thankful for and so many things happen every day that make us smile. With all this hardship we have to face, we still have so much joy. For some reason, though, all I want to do when I get to my blog is pour my heart out about all the symptoms I don't tell those around me. All I want to do is break down and tell you how hard this all is and how angry I am when no one around me seems to understand. All I want to do is report all the things the doctors have told me. I want to talk about how it frightens me and the dark places it sends me. I want to complain so badly!!
What holds me back you ask? I have been asked that by a therapist once or twice, and my answer is always the same. WHY?! What good does complaining do other than perpetuate the negative thoughts? I am afraid if I open up and allow myself to do that it will be like a floodgate that I cannot control. Not only that, I hate when I hear people complain about things when I am looking at their situation longingly. I wonder, do they not see the whole picture? Can't they see this could be a good thing? Or what about the parts of it they are not looking at? I guess in that sense, I do judge people. Do I see it as a weakness? Possibly. Do I see it at an attention getter? Absolutely! And that is the kind of attention I do not want.
I am not in search of sympathy. I feel like sympathy only gives me the allowance to feel sorry for myself. And, really, what kind of a life would I lead if I was constantly feeling self pity? I also don't need the pity. Do you know how many wonderful things I have going on? I have an amazing husband who is also an amazing father. I have a beautiful son with a beautiful soul. We have a roof over a heads, food on our table, and a steady paycheck. We may not be wealthy or even super comfortable, but we are taken care of. I still have my mobility. Other than an insulin pump I am not connected to any device throughout the day. I am mostly independent. Only on bad days does someone absolutely have to check in on me. We live in a nice town and have a good support system. I have an amazing group of friends. The sun rises every morning. No need for pity or self pity in this life.
The attention I seek with this blog is knowledge....guidance....perspective. In the position I am in it is so easy to get isolated. Not only am I already an introvert, but there is so much I feel no one will understand or want to hear. Not only do my limitations isolate me from gatherings for a number of different reasons, but my fear of being judged keeps me isolated. The misunderstandings about my situation seem to only overwhelm me. I find peace in knowing that President John F. Kennedy dealt with many of the issues I have, but he is no longer with us.
I have never met or even spoken with anyone who deals with APS Type 2 or any of the underlying autoimmune diseases. In the time of JFK medicine is not what it is today so he was looked at in a completely different light. He also had money. A great deal of money can aid in disguising a disease or getting exceptional treatment. I am amazed at the work he was able to do. I am astonished at the stress level he was able to endure. I have so many questions, and I look for a role model. It always feels a little more comfortable to walk a path someone else has forged.
With that I will end today. I end with the hope that someone out there will connect. I end with the hope that my own heart and mind will allow me to open up enough to heal inside but not enough to open floodgates. I end with the hope that the constant feeling of uncertainty is replaced with peace of mind knowing it will all be OK, even if I do not know how the story will go.
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