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!
Friday, September 28, 2012
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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