It has been a few years since I last posted. I really needed some support when I first starting going through this crazy journey of multiple illnesses stacking up on one another eventually being found to have APS Type II which is a fancy name for "my immune system prefers to attack me". I could find information on each disease. I could find blogs and stories of people who had theses diseases. But I could not find someone who had faced so much all at once. I could not see a light at the end of all these scary doctor appointments and tests and hospitalizations. I felt lost and alone, and understandably scared. I started this blog because it was what I was looking to find. I knew that there must be more people going through this, yet no one was talking.
A few years into writing, and being very vulnerable, I was told by someone that the information I was sharing would be better put in a journal. I got another comment or two after that as well. It started to make me feel bad. Just two or three tiny statements had this enormous affect on me. I shut down. I no longer wanted to share my story. I read non-fiction all the time. I love learning the ins and outs of anybody's stories. I thought that if I shared I would help someone else. Then these statements made me feel as if I were doing something wrong.
I started this blog with the intention of it eventually turning into a book. From the time I was first diagnosed with Type I Diabetes I was told I needed to write a book. As things played out for the next decade, the inquiries about a book kept flowing in. I continue to get encouraged to write a book. "It will help doctors." or "someone just like you needs this right now." or "it is so incredible, it is almost unbelievable." So, here I am again at my keyboard. Whether or not I ever turn my story into a book, I do not know. What I do know is, if I can impact someone I need to act.
Without going back detail by detail, I just want to re-introduce myself. I am a 37 year old wife and mother. I grew up in rural NM. At the age of 12 or 13 I was diagnosed with Hashimoto's Thyroiditis. That is similar to having a slow thyroid except the thyroid is actually a goiter or inflamed. My father passed away from Type I Diabetes when I was very young. At the age of 20 I was found to have the disease as well. I was in college studying psychology at the time. My goal was to help special needs individuals. That diagnosis made me take a bit of a turn and I decided to also study nursing wanting to eventually become a diabetic educator. Suddenly I began to have another problem. This time it was interstitial cystitis. A condition that prevents your bladder from maintaining its mucus layer leading to ulcers and burns inside your bladder. I began medication and started to feel better. I was told, however, that fertility was going to be an issue. Not being married and only being 21, that information went in one ear and out the other. I did have a long term boyfriend, but I am a total Type A personality so babies were not on my mind.
Jokes on me. I found out I was pregnant at 22. I was warned the pregnancy was not good. I continued my studies and had a healthy baby boy nine months later. Things seemed to be stabilizing. I had good blood sugar control and my thyroid medication was on point. I no longer needed my bladder medication because the IC had gone into remission. None of this stopped me from striving to reach my goal of a career in medicine. Until one fateful day my boyfriend, now husband, found me face down in the closet at 6am. I had had a seizure. Mind you, we thought we knew all of my health issues and epilepsy was not in the mix. The seizures became more frequent and continually unexplained. After about a year, we decided to move back to our rural hometown for a slower paced life hoping that would help. Unfortunately it didn't.
As time went on the snowball rolled. I was sent to the Mayo Clinic twice which only gave us a clear diagnosis of epilepsy. That made it necessary for more testing in our local region. I was found to have full blown Celiac disease which lead to a diagnosis of pernicious anemia, chronic atrophic gastritis, alkaline stomach, and gastroparesis. I was sent to a rheumatologist who diagnosed Lupus, but things still didn't seem right. To me or my doctors. I was sent to an immunologist. They found an array of allergies. Then suddenly, an answer.
I was diagnosed with Schmidt's syndrome or Auto-immune Polyendocrine Syndrome Type II. That's a fancy way of saying I have an overactive immune system that is attacking my body in multiple places. This made the myriad of diagnoses come together. But as all diseases do, they progressed. I finally agreed to go to Johns-Hopkins University. From there we were told my stomach had come to a halt and I needed a device called a gastric stimulator to survive.
Six weeks later we were in Dallas preparing for this new chapter. I got the stimulator implanted and began gaining a little strength and weight. My weight had gotten as low as 82 lbs. We spent four years in TX so I could be close to the doctors that implanted the device. Through those four years there were hospitalizations and a few bumps in the road, most of which are documented in previous posts. We eventually made the decision to move back to NM because I was becoming overwhelmed with being the patient, not feeling like a human. We chose a place on a major freeway so access to doctors would be easier because, let's face it, I do need monitoring. I also made sure there was someone nearby that could mange my stimulator.
The past four years have played out fairly smooth compared to my roller coaster decade and a half prior. Things have progressed as most diseases do. My stomach is no longer really responding to the stimulator. The battery will last about a year or two more if I am lucky. At that point, I will have to decide whether to replace the battery or remove the device all together. Because it has been so long (2013) since it was implanted I am worried I do not remember what it felt like to live without it. Through a lot of long, hard talks with my husband I have decided to let it die. I will hopefully be mentally strong enough to leave the device in for two to three months nonfunctional. This may give me a better idea of how much of a difference the stimulator has on me. If I decide to live without it, we can then remove it.
To be honest, my knee-jerk reaction is to take it out. The battery pack is under my skin in a pocket above the muscles. The leads go through the muscle to connect to the stomach. The battery pack takes up the entire left lower quadrant of my abdomen. For someone who is 5'3" on a good day and hangs out around 100 lbs right now, that is a lot of space. With my diabetes I have an insulin pump which is connected to the body by an infusion, similar to IV's except it is just in the fatty tissue not any veins. It needing to be in fatty tissue limits your sight options to the abdomen, love handles, buttocks, inner thighs, or back of the arm. A continuous glucose monitor, Dexcom, is also something that needs to be stuck into fatty tissue to read blood sugars through interstitial fluid in fatty tissue. All that being said, I have very little fat so I have my Dexcom on the right lower quadrant of my abdomen. That leaves the mini love handles for my pump infusions. The Dexcom and insulin pump infusions create scar tissue. Scar tissue does not absorb insulin properly and does not allow the Dexcom to have accurate numbers. We have tried other parts of my body, but these are the only places that work. Problem is, the scar tissue is building up and I have no where else to go. If I had that left lower quadrant of my abdomen available for my diabetes management devices it would help.
The conundrum here is blood sugar versus nutrition and weight. With the paralysis of my stomach and the multitude of other digestive issues, food is not absorbed properly. This wreaks havoc on my blood sugar. A normal stomach pumps about 16-24 times per minute acting like a blender with your food and passing it on to the small intestine. If I am lucky, mine will do that in a day. Food does not travel consistently or fluidly. Sugar is absorb through your small intestine so not knowing when the food actually will get to the small intestine causes some issues when trying to manage my blood sugars. Add that to the scar tissue I have building up causing trouble with insulin absorption and diabetes management is nearly impossible. I do what I can with diet and exercise, but a gastroparesis diet is completely opposite of a diabetic diet.
It is recommended that people get around 25 grams of fiber per day. Fat is ok, but best through plants and nuts. And protein recommendation is about 40 grams. Every body is different, this is just general. For diabetics, if you follow this diet with very little sugar you can be smooth sailing. Now for gastroparesis it is recommended to keep fiber less than 10 grams per day. Same goes for protein. And fat should stay around 5 grams per day. WHAT?! Yeah. Think about that one for a second. One egg is roughly 6 grams of protein. One slice of bread typically has anywhere from 2-5 grams of fat. A banana has about 3 grams of fiber. Now, imagine your typical day and your typical diet. Seems nearly impossible to meet all these bench marks or limits. There you have it. What would you do?
This has just been a brief re-introducing of my health background. Let's remember, my health does not define me. Reading this is daunting and it all sounds depressing and scary. The truth is, you're right. But I am not living in a pity party. I still have a million blessings all around. I still have the crazy mom days. I still find a way to exercise EVERYDAY because I love it. It makes me feel better. It makes me happy. And it makes me feel proud and accomplished when I have conquered something. I love to read. I like crime shows and comedy specials and sports. My son is autistic and teaches me so much. We have a crazy little 9 month old Australian Shepherd mix who makes us laugh everyday.
In an effort to not make this post any longer I will sign off for the day. My intention is to return to writing. I would love to share with you my antics, knowledge, health, and personal growth through this journey I call life. I will leave you with this little nugget. I have become friends (in my mind) with a health and fitness coach on YouTube named Caroline Jordan. She says "Smiling is an advanced move if you feel the need to kick it up a notch". I feel the need, ladies and gentlemen.
Showing posts with label Celiac Disease. Show all posts
Showing posts with label Celiac Disease. Show all posts
Thursday, June 25, 2020
Tuesday, May 6, 2014
Mountains Climbed
Nine Months has gone by since my new life began. I have proudly called it my second birthday many times and truly mean it. July 31, 2013 I got an Enterra gastric stimulator implanted. A device that has forever changed my life. I had been suffering a severe case of gastroparesis that was not responding to treatment. I went from a slim frame to a skeletal frame, losing more than 30 total pounds throughout the course of the disease. It was recommended for the umpteenth time that I go to Johns Hopkins University Medical Center. After a consultation in my hometown for a feeding tube determined my comorbidities would be exacerbated, even life threatening with forced nutrition, the surgeon had an 'out-of-the-box' idea I had never heard. Leaving that appointment with little information other than an "We'll be in touch after some research..." I was devastated. I had been weakening and weakening physically, but more so emotionally. A week later, a doctor had been chosen in Dallas, TX they were sure could help. But I also had to go to Johns Hopkins in a last ditch effort to save my life.
Within a month of the consultation with the feeding tube surgeon, we were on our way to Dallas to meet this amazing doctor. That very first appointment, he made a clear decision that my only hope was the gastric stimulator and I had plenty of history to show I was a great candidate. Not only do the physical ailments have to be there for medical devices such as these, but mental state plays a big roll. They do not want to implant a device or even attach any device to a patient who is not going to follow what is necessary for the device to work. For example, an insulin pump patient (which I also have due to Type I Diabetes) goes through the same mental test, insuring the patient has the right mindset to have a device attached to them 24 hours a day. You'd be amazed at what these things effect in daily life. He needed to be sure I understood everything. The device is implanted in a subcutaneous pouch in the abdomen (made by the surgeon) and leads attached to the device are guided through the abdominal muscles into the lining of the stomach. Recovery time and full effectiveness usually take about a year. You do see the device bulge out under the skin and you have to learn to adjust you movements accordingly. The battery lasts about five to ten years. At that time it is determined if a new one can/should be implanted. While explaining this he monitored my reaction and comprehension to determine if I was a candidate. Thank God it turned out positively for me. He then needed ammunition for the insurance to agree with his findings.
This time last year I was going through some brutal testing to prove to my insurance company why I was a candidate for such rare treatment. It actually isn't even considered treatment. The FDA classifies it as a humanitarian device, which simply means it improves quality of life but does not treat or correct a problem. That is why so much is needed for the insurance companies to even consider it. I was taken off my motility medications as well as my digestive enzymes and ulcer preventative medication. I take digestive enzymes because my body absolutely does not produce them. The ulcer preventative is due to Pernicious Anemia in which the inner lining of my stomach is eaten away by my immune system as well as having an alkaline environment as opposed to a normal pH level in the stomach or an acidic much like a GERD patient may have. The alkaline state is just as dangerous, if not more, than an acidic state in the stomach. I also have Celiac Disease in which the immune system is attacking the lining of the small intestine when gluten is in your system. That all being said, you can imagine I was incredibly uncomfortable. The process took about two weeks. I had endoscopies, gastric emptying studies, MRIs, CT scans, and I even swallowed a pill with a camera and other scanning properties that traveled throughout my digestive system giving a better look at what was going on inside. That in itself was the most difficult yet interesting one of them all. I was finally told the doctor had enough ammo and I was free to return home, but it was also necessary to be seen at Johns Hopkins to solidify it all and be sure every stone had been uncovered.
Once I returned home from Texas, I had six days to prepare for my trip to the scariest place I had ever gone. I had been seen at the Mayo Clinic in 2008 following through to the beginning of 2009 (not continuous). I was terrified then. Now to be sent to an equivalent or an even more progressive facility really puts mortality in front of your face. Luckily, I had my husband and my son along as well as an amazing aunt and cousin who flew out to Baltimore just to support me. That will never be forgotten- all the support. My sister even set up a donation account to help with travel and medical expenses. I was blown away by all the love. A quick trip into the doctor's office at Johns Hopkins lead to a few minor in-office tests all coming out as expected. This gave the doctor the ok to agree with the opinion of the previous two doctors I had seen regarding the need for the gastric stimulator; if for nothing else but the increased caloric allotment. The only stipulation, we had to move to the Dallas/ Fort Worth area to be closely monitored for life. I had never lived outside of New Mexico other than the two years of back and forth to California when my dad was alive. A move that was absolutely not planned had to be made within six weeks.
A feat I thought was impossible slowly began to play itself out. Years and years of pain and suffering with little to no answers in terms of relief- just diagnosis after diagnosis with treatments but relief was hardly part of the equation. My prayers for respite had been answered, loudly. But as those moments of change began, all I could think was the world was moving too quickly. Again, with the incredible support of my sister and extended family we found a place to live that fit all of our requirements. With the help of my parents we were packed and ready to go within those six weeks. My husband had to stay behind to continue working until logistics got worked out. Thankfully, he was only there three weeks before he could join us. He made his move two days before the beginning of this new life. All the while I was wasting away even quicker because life had gotten away from me. I couldn't believe it all fell into place so easily yet so inconceivably.
Entering the hospital, I was down to 80 such pounds. I did not ask the exact number. I had to fast as you normally do with most procedures involving anesthesia. I have had to fast so much in recent years, I will be glad to never see lemon-lime soda or Gatorade as well as lemon or lime Jello. The next day, all I remember was being excited to finally get the stimulator and then, waking up. I woke up in incredible pain as if a fire had been started in my abdomen and nothing was there to stop it. I am not talking heartburn type fire, I am talking roasting-chestnuts and accidently falling in the fire. A nurse immediately came to the rescue with pain relief pushed into my IV. My husband was allowed to see me shortly after that and I remember him asking how I felt. I said, "Like I have been hit by a truck....but a good truck!" He must have passed that along because that phrase has followed me since and I love it.
Those first few days were difficult. I was expecting or strongly hoping I would be able to eat right away. I actually could only handle smoothies but quickly moved on to tiny doses of pizza and French fries. What else would you chose after not being able to eat solid food for so long? I thought life was going to be better, but that I was going to be weakened and forever changed by the surgery. The timeline was given to me, a year towards recovery and full effectiveness. As the year passes, I have reached many milestones, but in the back of my mind every month I think "Look what this has done for you. This is the best it can be." I am proven wrong time and time again.
I recently have reached milestones I have dreamed about for years. You may get tired of blog post after post talking about the unthinkables I have reached, but that's the reality of my journey. And isn't that incredible? For the first time in two to three years I was able to put jeans on with little to no discomfort this past weekend. Previously the waistband and button that have no give would only cause pain to my constantly full and distended belly. Then, in the past nine months, I would try jeans on every now and then, but it would still cause pain, only now it was the device sight and the belly discomfort. I have saved my favorite pairs of jeans out of hope of one day wearing them. As I was doing laundry on Saturday they caught my eye while putting away my normal attire of yoga pants. I stopped in my tracks and decided to try them on. I put on a loose pair first and they felt alright so I moved on to my favorite pair. They felt fine. I squatted, I bent, I twisted, I sat...and no usual pain.
The pain at the site had now turned into just slight discomfort. That's normal with jeans considering none of us ever find the perfect fit. I danced around with my son for a little while and the jeans still felt alright. I made him take a picture out of sheer glee. I have not challenged myself to wearing them all day, but I will get there. I felt so accomplished, my mind has been reeling about what else I may be able to do. This morning a challenge was calling my name.
I usually rotate walking and yoga for exercise about five to six times a week. It's a great time for centering myself. My walks includes my little dog Chewy. He is a Dachshund/ Chihuahua mix, that's what I mean by little. This morning I took him for our usual walk at a walking trail at the college across the street. It's a one mile loop and we normally do two. Today, as I normally do, I saw a few joggers along the loop. I used to be a long distance runner so that itch is always there. I haven't been able to run for at least two and a half years or more. Today I thought "could I run a mile? I could try....but stop if it doesn't feel right. Stop." So, I had this little discussion in my head the whole time I was on my walk. Chewy couldn't run with me for certain so I walked him home. I told my husband what I was going to try and he was reluctantly excited. I went across that street, I got on that path, and I ran. I thought I would surely wimp out a few steps in, but my body just fell into natural motion. I didn't get out of breath. I didn't push myself. I just ran a mile. I felt ecstatic. I walked home feeling more powerful and accomplished than I had in years all the while knowing this incredible device is helping me climb mountains.
Not only have I been able to do these things; eat more solid food, go to restaurants, wear jeans, run again, even build strength with yoga not just maintain the little I had; but my heart and mind have grown exponentially too. Years and years of day in and day out malaise is so exhausting. Imagine waking up feeling like you have the flu everyday, but you still have the same responsibilities and expectations on you as any other person in the world. You put on your best face and muddle through the best you can. Every now and then a burst of energy comes and, a phenomenon described by doctors, you go into this manic state, trying to accomplish as much as you can while the energy is there. So, I may be glued to the bed one day and the next day a little feeling of increased energy has me rushing to the store, cleaning the bathroom, washing dishes, vacuuming, etc. until the energy fades. You crash and burn then pay for the overexertion for a few days thereafter. Now, I often still feel puny, achy, nauseated, flu-like but it has lightened up enough for me to notice. I sleep through the night sometimes feeling refreshed in the morning. All in all, the humanitarian device has done exactly what it is intended to do.
The thought I'd like to spread to the world is open your eyes to the world, don't focus on the daily grind. When I stop to write my blog or in my journal at night, I am often tired and in need of a release. As I go about my writings I start to uncover all the little jewels I missed throughout the day, the week, the month. This makes me turn to my son and see how far he has come. Not a day has gone by with him on this earth, that I have not seen a miracle up close and personal. But to know he has lived his entire life with a sick mother only speaks volumes to who he is today. At such a young age he has more compassion, wisdom, and intelligence than I see in the average adult. He challenges me intellectually on a daily basis. Sometimes I get so wrapped up in responsibilities I forget to slow down to embrace him fully. When I open my eyes, I see the glory of the world. I see how amazing he is. I see how beautiful the trees and the sky are. I feel all the improvements in my body. I see lights at the end of the tunnels when physical ailments overcome me. These mountains I have climbed will be in clear view for years to come.
I will actively continue and strive to keep my eyes wide open. The happiness I have felt these past few weeks is close to the elation I felt the day my son was born and the day I got married. How can the unimaginable continue to happen only to remind you how grand life can be?
Within a month of the consultation with the feeding tube surgeon, we were on our way to Dallas to meet this amazing doctor. That very first appointment, he made a clear decision that my only hope was the gastric stimulator and I had plenty of history to show I was a great candidate. Not only do the physical ailments have to be there for medical devices such as these, but mental state plays a big roll. They do not want to implant a device or even attach any device to a patient who is not going to follow what is necessary for the device to work. For example, an insulin pump patient (which I also have due to Type I Diabetes) goes through the same mental test, insuring the patient has the right mindset to have a device attached to them 24 hours a day. You'd be amazed at what these things effect in daily life. He needed to be sure I understood everything. The device is implanted in a subcutaneous pouch in the abdomen (made by the surgeon) and leads attached to the device are guided through the abdominal muscles into the lining of the stomach. Recovery time and full effectiveness usually take about a year. You do see the device bulge out under the skin and you have to learn to adjust you movements accordingly. The battery lasts about five to ten years. At that time it is determined if a new one can/should be implanted. While explaining this he monitored my reaction and comprehension to determine if I was a candidate. Thank God it turned out positively for me. He then needed ammunition for the insurance to agree with his findings.
This time last year I was going through some brutal testing to prove to my insurance company why I was a candidate for such rare treatment. It actually isn't even considered treatment. The FDA classifies it as a humanitarian device, which simply means it improves quality of life but does not treat or correct a problem. That is why so much is needed for the insurance companies to even consider it. I was taken off my motility medications as well as my digestive enzymes and ulcer preventative medication. I take digestive enzymes because my body absolutely does not produce them. The ulcer preventative is due to Pernicious Anemia in which the inner lining of my stomach is eaten away by my immune system as well as having an alkaline environment as opposed to a normal pH level in the stomach or an acidic much like a GERD patient may have. The alkaline state is just as dangerous, if not more, than an acidic state in the stomach. I also have Celiac Disease in which the immune system is attacking the lining of the small intestine when gluten is in your system. That all being said, you can imagine I was incredibly uncomfortable. The process took about two weeks. I had endoscopies, gastric emptying studies, MRIs, CT scans, and I even swallowed a pill with a camera and other scanning properties that traveled throughout my digestive system giving a better look at what was going on inside. That in itself was the most difficult yet interesting one of them all. I was finally told the doctor had enough ammo and I was free to return home, but it was also necessary to be seen at Johns Hopkins to solidify it all and be sure every stone had been uncovered.
Once I returned home from Texas, I had six days to prepare for my trip to the scariest place I had ever gone. I had been seen at the Mayo Clinic in 2008 following through to the beginning of 2009 (not continuous). I was terrified then. Now to be sent to an equivalent or an even more progressive facility really puts mortality in front of your face. Luckily, I had my husband and my son along as well as an amazing aunt and cousin who flew out to Baltimore just to support me. That will never be forgotten- all the support. My sister even set up a donation account to help with travel and medical expenses. I was blown away by all the love. A quick trip into the doctor's office at Johns Hopkins lead to a few minor in-office tests all coming out as expected. This gave the doctor the ok to agree with the opinion of the previous two doctors I had seen regarding the need for the gastric stimulator; if for nothing else but the increased caloric allotment. The only stipulation, we had to move to the Dallas/ Fort Worth area to be closely monitored for life. I had never lived outside of New Mexico other than the two years of back and forth to California when my dad was alive. A move that was absolutely not planned had to be made within six weeks.
A feat I thought was impossible slowly began to play itself out. Years and years of pain and suffering with little to no answers in terms of relief- just diagnosis after diagnosis with treatments but relief was hardly part of the equation. My prayers for respite had been answered, loudly. But as those moments of change began, all I could think was the world was moving too quickly. Again, with the incredible support of my sister and extended family we found a place to live that fit all of our requirements. With the help of my parents we were packed and ready to go within those six weeks. My husband had to stay behind to continue working until logistics got worked out. Thankfully, he was only there three weeks before he could join us. He made his move two days before the beginning of this new life. All the while I was wasting away even quicker because life had gotten away from me. I couldn't believe it all fell into place so easily yet so inconceivably.
Entering the hospital, I was down to 80 such pounds. I did not ask the exact number. I had to fast as you normally do with most procedures involving anesthesia. I have had to fast so much in recent years, I will be glad to never see lemon-lime soda or Gatorade as well as lemon or lime Jello. The next day, all I remember was being excited to finally get the stimulator and then, waking up. I woke up in incredible pain as if a fire had been started in my abdomen and nothing was there to stop it. I am not talking heartburn type fire, I am talking roasting-chestnuts and accidently falling in the fire. A nurse immediately came to the rescue with pain relief pushed into my IV. My husband was allowed to see me shortly after that and I remember him asking how I felt. I said, "Like I have been hit by a truck....but a good truck!" He must have passed that along because that phrase has followed me since and I love it.
Those first few days were difficult. I was expecting or strongly hoping I would be able to eat right away. I actually could only handle smoothies but quickly moved on to tiny doses of pizza and French fries. What else would you chose after not being able to eat solid food for so long? I thought life was going to be better, but that I was going to be weakened and forever changed by the surgery. The timeline was given to me, a year towards recovery and full effectiveness. As the year passes, I have reached many milestones, but in the back of my mind every month I think "Look what this has done for you. This is the best it can be." I am proven wrong time and time again.
I recently have reached milestones I have dreamed about for years. You may get tired of blog post after post talking about the unthinkables I have reached, but that's the reality of my journey. And isn't that incredible? For the first time in two to three years I was able to put jeans on with little to no discomfort this past weekend. Previously the waistband and button that have no give would only cause pain to my constantly full and distended belly. Then, in the past nine months, I would try jeans on every now and then, but it would still cause pain, only now it was the device sight and the belly discomfort. I have saved my favorite pairs of jeans out of hope of one day wearing them. As I was doing laundry on Saturday they caught my eye while putting away my normal attire of yoga pants. I stopped in my tracks and decided to try them on. I put on a loose pair first and they felt alright so I moved on to my favorite pair. They felt fine. I squatted, I bent, I twisted, I sat...and no usual pain.
I usually rotate walking and yoga for exercise about five to six times a week. It's a great time for centering myself. My walks includes my little dog Chewy. He is a Dachshund/ Chihuahua mix, that's what I mean by little. This morning I took him for our usual walk at a walking trail at the college across the street. It's a one mile loop and we normally do two. Today, as I normally do, I saw a few joggers along the loop. I used to be a long distance runner so that itch is always there. I haven't been able to run for at least two and a half years or more. Today I thought "could I run a mile? I could try....but stop if it doesn't feel right. Stop." So, I had this little discussion in my head the whole time I was on my walk. Chewy couldn't run with me for certain so I walked him home. I told my husband what I was going to try and he was reluctantly excited. I went across that street, I got on that path, and I ran. I thought I would surely wimp out a few steps in, but my body just fell into natural motion. I didn't get out of breath. I didn't push myself. I just ran a mile. I felt ecstatic. I walked home feeling more powerful and accomplished than I had in years all the while knowing this incredible device is helping me climb mountains.
Not only have I been able to do these things; eat more solid food, go to restaurants, wear jeans, run again, even build strength with yoga not just maintain the little I had; but my heart and mind have grown exponentially too. Years and years of day in and day out malaise is so exhausting. Imagine waking up feeling like you have the flu everyday, but you still have the same responsibilities and expectations on you as any other person in the world. You put on your best face and muddle through the best you can. Every now and then a burst of energy comes and, a phenomenon described by doctors, you go into this manic state, trying to accomplish as much as you can while the energy is there. So, I may be glued to the bed one day and the next day a little feeling of increased energy has me rushing to the store, cleaning the bathroom, washing dishes, vacuuming, etc. until the energy fades. You crash and burn then pay for the overexertion for a few days thereafter. Now, I often still feel puny, achy, nauseated, flu-like but it has lightened up enough for me to notice. I sleep through the night sometimes feeling refreshed in the morning. All in all, the humanitarian device has done exactly what it is intended to do.
The thought I'd like to spread to the world is open your eyes to the world, don't focus on the daily grind. When I stop to write my blog or in my journal at night, I am often tired and in need of a release. As I go about my writings I start to uncover all the little jewels I missed throughout the day, the week, the month. This makes me turn to my son and see how far he has come. Not a day has gone by with him on this earth, that I have not seen a miracle up close and personal. But to know he has lived his entire life with a sick mother only speaks volumes to who he is today. At such a young age he has more compassion, wisdom, and intelligence than I see in the average adult. He challenges me intellectually on a daily basis. Sometimes I get so wrapped up in responsibilities I forget to slow down to embrace him fully. When I open my eyes, I see the glory of the world. I see how amazing he is. I see how beautiful the trees and the sky are. I feel all the improvements in my body. I see lights at the end of the tunnels when physical ailments overcome me. These mountains I have climbed will be in clear view for years to come.
I will actively continue and strive to keep my eyes wide open. The happiness I have felt these past few weeks is close to the elation I felt the day my son was born and the day I got married. How can the unimaginable continue to happen only to remind you how grand life can be?
Monday, January 20, 2014
Battle Scars and Victory Badges
My blog has been somewhat consistent along the way, but never every two weeks or once a month that you could set your calendar by. This has been very intentional because life doesn't happen in perfect increments. I don't believe fair knowledge or information can be contained to such strategic deadlines or timelines. Just like a new year's resolution, I intend on keeping it as consistent as possible to gain as many readers and followers as I can reach. Let's face it, many of our best intentions are not or cannot be kept. That being said, I would have liked to post this on my 5 month birthday/ anniversary, but life happened.
Twenty days ago I celebrated my 5 month birthday/ anniversary. I had a gastric stimulator implanted on July 31, 2013. Although I have explained this in prior posts, I would like to reiterate myself due to confusion and misunderstandings along the way. A gastric stimulator is a device that is implanted in to subcutaneous tissue in the abdomen. This tissue is the fat or loose layer between outer skin and muscle. Electrodes or leads are then guided through the abdomen into the lining of the stomach. These electrodes emit electronic stimulation of the stomach muscles much like a pacemaker does for the heart. Unlike a pacemaker, the gastric stimulator does not make rhythmic motion occur in the stomach. It does allow more movement of the paralyzed smooth muscles that aid in digestion.
This confusion or lack of knowledge became very apparent to me recently. After dealing with the most horrific stomach virus I had ever seen attack my 8 year old, my magnificent immune system allowed the demon in. One minute I was fine, the next minute I was emitting everything I had ingested and more..and more...and more. I called my aunt and husband within minutes of onset and within an hour I was nearly incoherent when my aunt came to the rescue. I will cut details, but within four hours I arrived at the hospital where my surgery had taken place.
By the time the ER staff triaged me (no more than 30 minutes after arrival) I was severely dehydrated to the point where even my limbs were stiff as a board. I had never experienced or seen this. During triage, I cannot tell you how adamantly my husband and I were in informing the staff of my complicated history but more importantly the stimulator. Initially, we were treated like all other patients and herded along like cattle until they saw the level of dehydration in combination with the diabetes and we were rushed to a room.
I had called my surgeon/ gastroenterologist as soon as the virus showed its face. He was out of the office in conferences with very bad phone reception, but the office staff did alert him of my condition. Celiac disease, inflammatory bowel disease, gastroparesis, and a gastric stimulator do not bode well in these conditions. He called my cell phone as they were putting an IV in. He spoke directly with the ER doctors to instruct them on what to do. He asked that they admit me for the night to be observed to make sure I was stable, but ultimately left the decision up to me telling the ER doctors I was a good patient who knew my body well (pat on the back). I was given fluids and medicine to stop the dirtiness and pain. After about 4 hours, the ER doctor checked in on me hinting at getting me to a bed upstairs, but I stood my ground and asked to be discharged to rest at home and be with my son. That's just what I did.
The days after I began having a strange revelation. All these years of disease and diagnoses and I still viewed myself the same as I always had. I mean, don't all of us miss the gradual changes as we grow and age? Suddenly I realized, what could have taken my son three days to get to (severe dehydration) yet never seen because his treatment came sooner than that, only took my body less than four hours. I was in such a state that I was unable to walk, struggled to talk, barely hanging on to consciousness let alone coherency. And here I am a week and a half out still struggling to balance my blood sugars and gain some normalcy in my gut. Rude awakening.
For the last 8-10 years I have complained of symptoms I had no idea were related to gastroparesis. I had never even heard of this condition before. I had these symptoms since I was young, as long as I remember. As I got older they got worse. I was diagnosed with Type I diabetes at 20 years old, which is typically linked to gastroparesis when management of the disease is lacking for a long period of time, often years. I believe these symptoms were not followed up on because I was young, my diabetes was/ is under good control, and it is highly unlikely. Thank goodness, the greater plan got me to doctors who found a good path for my treatment.
I have been through the ringer with these diseases. It has been one on top of another since the age of 12 or 13, but the snowball grew quickly these past five years. Moving from my college town back to my small hometown for a slower pace of life, thinking that would help somehow turned out to be a blessing and a curse. At the time I only knew of Hashimoto's disease, Type I diabetes, and Interstitial Cystitis. I had a baby boy and suddenly began having unexplained seizures. I was sent to the Mayo Clinic and the answers started slowly showing themselves as time went on, but those small town doctors often did more than they realized by giving pieces of the puzzle one at a time making it easier to see the bigger picture of what was necessary.
For the longest time, even now sometimes, I thought I was a victim and couldn't catch a break. I will be honest and say that it is difficult to manage 10-12 chronic illnesses at one time. On good emotional days, I see this as a great learning experience. On bad emotional days, I feel as though I cannot catch up or continue to juggle so many balls. I am lucky as a patient to have some very useful background knowledge of psychology and the medical field. Add to that, being the patient and knowledge goes up exponentially. Intertwining the science, logic, faith, hope, and emotions is a beautiful disaster.
I have been mentally motivating myself since this awaking has begun. When the days are physically tough they become emotionally tough and this cycle is hard to break. I enjoy walking or doing yoga for overall health. I could go into the details of how this aids digestion with good blood flow, gravity, and massages the digestive tract....but I won't (wink). This morning as I was walking and feeling down because every once in a while the routine falls out of place and our bodies pay for it. Missing pills here and there. A bad infusion sight with my insulin pump leading to grossly high blood sugars. All of this is under my control so I am really hard on myself when I make a misstep. This morning I thought 'Be realistic in the moment'. Of course, with two of us in the household incredibly shaken by this stomach bug, my husband just starting a new position at work and all the while trying to tend to us sickies, there is going to be some upheaval. 'Don't be so hard on yourself'.
As the thoughts were running through my head, the past few weeks kind of circled as well- good and bad. All the acute illness layered on top of the chronic illness layered on top of emotions and fears had my mind reeling. I realize that I often get stuck in my head. This tape keeps going when my days are tough. These thoughts take me too far in to the future with all these 'what-ifs' or 'statistics says' only bringing me down further leading me to try to take tighten control of what I am facing. Do you see where this is going? That's when it gets overwhelming and my mood is forever stuck in this terrified, determined rut. I am in this rut and the world is still going on around me as if nothing can stop it. You know what? Nothing can. That's when my mind said 'Be in the moment of what is really in front of you'.
While I waste time stuck inside myself trying to navigate this terrain, I miss the things that are so crucial to life and happiness. My son's contagious laugh every time his Daddy does something even remotely crude or embarrassing or when he sees a funny commercial. My husband's insatiable need to make jokes at ever turn while I try to act as if nothing he does is funny anymore. My own incredible accomplishments that I do not see while I am longing for those of my peers. The beauty that is showing itself outwardly as my body is gaining nourishment. All the new and interesting sites to take in around us in this new environment. So much to be seen and enjoyed, why waste time stuck inside the darkness? I realized that this is what may be my biggest fear. The moment.
All my life there has been a goal, a door, a window to reach. As a child you go through school waiting to get out of elementary. Then, excitedly making it to middle school and going through changes that allow more freedom and excitement anxiously awaiting high school. In high school, new love, new privileges, new experiences all leading up to college or a job. At each stage, working to make it to that next level. The whole way through it, we are planning our next move to get us to that next level. As a child, adolescent, and young adult we are so wrapped up in ourselves that we often live in the moment without a care in the world. I was abruptly stopped midway through this path that most of us take. I had to stop focusing on the joy and the path to suddenly focus on mortality.
Well, no one wants to face their own mortality. Did that become my Achilles heel? The moment at hand suddenly became too scary to face so my coping mechanism became ignoring it all together hoping to move past it. The unfortunate thing about this coping mechanism is that it is horrible and more importantly detrimental. Losing site of what is right in front of you is blinding. So I say, (in the great words of P!NK) stare fear in the face and say I just don't care.
I still have goals. Maybe not traditional but goals nonetheless. I still have dreams. They are not the dreams of my high school self nor my college self, but my 'now' self. I still have stages and levels yet to be reached. I still have faith. I still have hope. I still have joy. I still have love. What I don't need is to forget all that I still have while focusing on all the don't-haves.
I wrote a post a while back talking about my dad and sister. My dad has passed and my sister lives in California. They both have Type I diabetes. I do not know or cannot see clearly if this disease has precedents over the others. To me, it is the biggest after APS Type II. Possibly because I have seen it in them and it has terrified me and haunted me my entire life. I miss them both terribly ALL THE TIME. In that post, I wrote about how the longing is so painful and the disease so devastating yet when I shift my perspective I see how this is one thing that ties us together no matter our distance. This is one thing that we all understand about each other in unspoken ways. That perspective is what I have held on to since that realization. (Sometimes the greatest things come from that darkness)
Deciding that I am the champion here has lead me to this point. Embracing the battle scars I have on my belly and gold medal you can see poking out of my lower abdomen. Looking at old pictures of when I was a star athlete or competitive long distance runner shows me what I was when I was considered to be in peak physical condition. Knowing I am stronger now yet thinking 'I can get back to that'. That, in this case, meaning weight or size. Still telling myself 'but it is ok if you don't' knowing that as long as I continue to do the best I can, I cannot get down on myself. I can't expect more from myself than I do from others. My victory badge will remind me of all that keeps me grounded.
Within days of getting my victory badge it began taking on a new meaning. I have been contacted by others who share my struggle. Some of them even asking me questions of guidance and inspiration....ME?! My blog, my words, my life in the flesh is reaching people and making an impact. The thing I had strived for, thinking it would be done in the medical field with scrubs or a white coat, has been replaced by my inner thoughts and outward strength and resilience. That is the best feeling in the world. This victory badge not only ties me to my sister and dad, but to all of those who share my struggle and victories in their own lives. My medical alert, my victory badge, my connections, ME.
Twenty days ago I celebrated my 5 month birthday/ anniversary. I had a gastric stimulator implanted on July 31, 2013. Although I have explained this in prior posts, I would like to reiterate myself due to confusion and misunderstandings along the way. A gastric stimulator is a device that is implanted in to subcutaneous tissue in the abdomen. This tissue is the fat or loose layer between outer skin and muscle. Electrodes or leads are then guided through the abdomen into the lining of the stomach. These electrodes emit electronic stimulation of the stomach muscles much like a pacemaker does for the heart. Unlike a pacemaker, the gastric stimulator does not make rhythmic motion occur in the stomach. It does allow more movement of the paralyzed smooth muscles that aid in digestion.
This confusion or lack of knowledge became very apparent to me recently. After dealing with the most horrific stomach virus I had ever seen attack my 8 year old, my magnificent immune system allowed the demon in. One minute I was fine, the next minute I was emitting everything I had ingested and more..and more...and more. I called my aunt and husband within minutes of onset and within an hour I was nearly incoherent when my aunt came to the rescue. I will cut details, but within four hours I arrived at the hospital where my surgery had taken place.
By the time the ER staff triaged me (no more than 30 minutes after arrival) I was severely dehydrated to the point where even my limbs were stiff as a board. I had never experienced or seen this. During triage, I cannot tell you how adamantly my husband and I were in informing the staff of my complicated history but more importantly the stimulator. Initially, we were treated like all other patients and herded along like cattle until they saw the level of dehydration in combination with the diabetes and we were rushed to a room.
I had called my surgeon/ gastroenterologist as soon as the virus showed its face. He was out of the office in conferences with very bad phone reception, but the office staff did alert him of my condition. Celiac disease, inflammatory bowel disease, gastroparesis, and a gastric stimulator do not bode well in these conditions. He called my cell phone as they were putting an IV in. He spoke directly with the ER doctors to instruct them on what to do. He asked that they admit me for the night to be observed to make sure I was stable, but ultimately left the decision up to me telling the ER doctors I was a good patient who knew my body well (pat on the back). I was given fluids and medicine to stop the dirtiness and pain. After about 4 hours, the ER doctor checked in on me hinting at getting me to a bed upstairs, but I stood my ground and asked to be discharged to rest at home and be with my son. That's just what I did.
The days after I began having a strange revelation. All these years of disease and diagnoses and I still viewed myself the same as I always had. I mean, don't all of us miss the gradual changes as we grow and age? Suddenly I realized, what could have taken my son three days to get to (severe dehydration) yet never seen because his treatment came sooner than that, only took my body less than four hours. I was in such a state that I was unable to walk, struggled to talk, barely hanging on to consciousness let alone coherency. And here I am a week and a half out still struggling to balance my blood sugars and gain some normalcy in my gut. Rude awakening.
For the last 8-10 years I have complained of symptoms I had no idea were related to gastroparesis. I had never even heard of this condition before. I had these symptoms since I was young, as long as I remember. As I got older they got worse. I was diagnosed with Type I diabetes at 20 years old, which is typically linked to gastroparesis when management of the disease is lacking for a long period of time, often years. I believe these symptoms were not followed up on because I was young, my diabetes was/ is under good control, and it is highly unlikely. Thank goodness, the greater plan got me to doctors who found a good path for my treatment.
I have been through the ringer with these diseases. It has been one on top of another since the age of 12 or 13, but the snowball grew quickly these past five years. Moving from my college town back to my small hometown for a slower pace of life, thinking that would help somehow turned out to be a blessing and a curse. At the time I only knew of Hashimoto's disease, Type I diabetes, and Interstitial Cystitis. I had a baby boy and suddenly began having unexplained seizures. I was sent to the Mayo Clinic and the answers started slowly showing themselves as time went on, but those small town doctors often did more than they realized by giving pieces of the puzzle one at a time making it easier to see the bigger picture of what was necessary.
For the longest time, even now sometimes, I thought I was a victim and couldn't catch a break. I will be honest and say that it is difficult to manage 10-12 chronic illnesses at one time. On good emotional days, I see this as a great learning experience. On bad emotional days, I feel as though I cannot catch up or continue to juggle so many balls. I am lucky as a patient to have some very useful background knowledge of psychology and the medical field. Add to that, being the patient and knowledge goes up exponentially. Intertwining the science, logic, faith, hope, and emotions is a beautiful disaster.
I have been mentally motivating myself since this awaking has begun. When the days are physically tough they become emotionally tough and this cycle is hard to break. I enjoy walking or doing yoga for overall health. I could go into the details of how this aids digestion with good blood flow, gravity, and massages the digestive tract....but I won't (wink). This morning as I was walking and feeling down because every once in a while the routine falls out of place and our bodies pay for it. Missing pills here and there. A bad infusion sight with my insulin pump leading to grossly high blood sugars. All of this is under my control so I am really hard on myself when I make a misstep. This morning I thought 'Be realistic in the moment'. Of course, with two of us in the household incredibly shaken by this stomach bug, my husband just starting a new position at work and all the while trying to tend to us sickies, there is going to be some upheaval. 'Don't be so hard on yourself'.
As the thoughts were running through my head, the past few weeks kind of circled as well- good and bad. All the acute illness layered on top of the chronic illness layered on top of emotions and fears had my mind reeling. I realize that I often get stuck in my head. This tape keeps going when my days are tough. These thoughts take me too far in to the future with all these 'what-ifs' or 'statistics says' only bringing me down further leading me to try to take tighten control of what I am facing. Do you see where this is going? That's when it gets overwhelming and my mood is forever stuck in this terrified, determined rut. I am in this rut and the world is still going on around me as if nothing can stop it. You know what? Nothing can. That's when my mind said 'Be in the moment of what is really in front of you'.
While I waste time stuck inside myself trying to navigate this terrain, I miss the things that are so crucial to life and happiness. My son's contagious laugh every time his Daddy does something even remotely crude or embarrassing or when he sees a funny commercial. My husband's insatiable need to make jokes at ever turn while I try to act as if nothing he does is funny anymore. My own incredible accomplishments that I do not see while I am longing for those of my peers. The beauty that is showing itself outwardly as my body is gaining nourishment. All the new and interesting sites to take in around us in this new environment. So much to be seen and enjoyed, why waste time stuck inside the darkness? I realized that this is what may be my biggest fear. The moment.
All my life there has been a goal, a door, a window to reach. As a child you go through school waiting to get out of elementary. Then, excitedly making it to middle school and going through changes that allow more freedom and excitement anxiously awaiting high school. In high school, new love, new privileges, new experiences all leading up to college or a job. At each stage, working to make it to that next level. The whole way through it, we are planning our next move to get us to that next level. As a child, adolescent, and young adult we are so wrapped up in ourselves that we often live in the moment without a care in the world. I was abruptly stopped midway through this path that most of us take. I had to stop focusing on the joy and the path to suddenly focus on mortality.
Well, no one wants to face their own mortality. Did that become my Achilles heel? The moment at hand suddenly became too scary to face so my coping mechanism became ignoring it all together hoping to move past it. The unfortunate thing about this coping mechanism is that it is horrible and more importantly detrimental. Losing site of what is right in front of you is blinding. So I say, (in the great words of P!NK) stare fear in the face and say I just don't care.
I still have goals. Maybe not traditional but goals nonetheless. I still have dreams. They are not the dreams of my high school self nor my college self, but my 'now' self. I still have stages and levels yet to be reached. I still have faith. I still have hope. I still have joy. I still have love. What I don't need is to forget all that I still have while focusing on all the don't-haves.
I wrote a post a while back talking about my dad and sister. My dad has passed and my sister lives in California. They both have Type I diabetes. I do not know or cannot see clearly if this disease has precedents over the others. To me, it is the biggest after APS Type II. Possibly because I have seen it in them and it has terrified me and haunted me my entire life. I miss them both terribly ALL THE TIME. In that post, I wrote about how the longing is so painful and the disease so devastating yet when I shift my perspective I see how this is one thing that ties us together no matter our distance. This is one thing that we all understand about each other in unspoken ways. That perspective is what I have held on to since that realization. (Sometimes the greatest things come from that darkness)
Deciding that I am the champion here has lead me to this point. Embracing the battle scars I have on my belly and gold medal you can see poking out of my lower abdomen. Looking at old pictures of when I was a star athlete or competitive long distance runner shows me what I was when I was considered to be in peak physical condition. Knowing I am stronger now yet thinking 'I can get back to that'. That, in this case, meaning weight or size. Still telling myself 'but it is ok if you don't' knowing that as long as I continue to do the best I can, I cannot get down on myself. I can't expect more from myself than I do from others. My victory badge will remind me of all that keeps me grounded.
Within days of getting my victory badge it began taking on a new meaning. I have been contacted by others who share my struggle. Some of them even asking me questions of guidance and inspiration....ME?! My blog, my words, my life in the flesh is reaching people and making an impact. The thing I had strived for, thinking it would be done in the medical field with scrubs or a white coat, has been replaced by my inner thoughts and outward strength and resilience. That is the best feeling in the world. This victory badge not only ties me to my sister and dad, but to all of those who share my struggle and victories in their own lives. My medical alert, my victory badge, my connections, ME.
Tuesday, December 18, 2012
Reducing Stress
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.
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.
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.
Wednesday, August 15, 2012
Celiac Scare Update
Yesterday I wrote about my fears of my six year old son developing Celiac Disease. I was diagnosed in the summer of 2009, and have realized the severity of my own case over these past few years. Just as with cancer, diabetes, and heart disease patients are told to alert their families of a diagnosis because it could be hereditary. With my complex medical history along with my family's strong history of autoimmune diseases, my husband and I are on constant alert with our little guy.
He came home from school on Monday with a rash. The rash persisted and did not respond to allergy medication orally or topically. I took him into his pediatrician yesterday with my heart set on getting him screened for Celiac Disease even if his opinion of the rash pointed him otherwise. I wanted a baseline, a warning, some sort of tangible evidence leading us to look for Celiac or let our guards down.
I have been extremely lucky with pediatricians for my son. This one in particular has followed him for about 4 years. He really takes the time to sit with me and explain his thinking when treating or diagnosing. His first impression of the rash was of course and allergic reaction to something. The good news, it does not look systemic. It looks more like a contact reaction. That means rather than him ingesting or inhaling an allergen that caused the rash, he rubbed up against something that caused the rash. This could happen even through clothing.
My son is an active child who gets in and out of anything and everything so this was no surprise to me. At home we use hypoallergenic everything, but at school or at the river or on the playground anything could be the cause. Considering he had a very active weekend outdoors and then went for his second day of school, I felt relieved thinking it could be totally random.
I still expressed my concerns about Celiac Disease. Explaining again to his doctor my medical history and our goal for catching things early for my son if need be. He acknowledge my concerns and gave his thoughts on it. In lay men's terms he essentially said these things are considered hereditary. Of course if someone in your family has cancer, or diabetes, or Celiac Disease, or heart disease than you are at a higher risk of developing it, but it is not a guarantee.
Yes, there is initial blood testing for Celiac Disease, but to actually have a diagnosis in place you must (according to the National GI guidelines) have a biopsy of your small intestine confirming the diagnosis. With the blood test there are two genetic markers they check as well as antibodies. If your genetic markers come back positive, that does not mean you have Celiac Disease or will get it just the same as for the breast cancer markers. Many women who have the genetic marker for breast cancer and a strong family history have a mastectomy as a precaution never knowing for sure if they would've ever actually developed breast cancer in their lifetime. Our pediatrician views Celiac Disease the same way.
A blood test for a small child is traumatizing enough. I don't even remember having my blood drawn until I was in my preteens, and that was devastating. Then, what happens if the markers come back positive? There is no pediatric GI doctor in our area so we would have to be referred 5 hrs away. Then our six year old would have to go through an endoscopy and a biopsy. Awfully dramatic for a preventative measure. Even at that, what if the markers are positive but he has no antibodies and the biopsy is clear.....then we see our son as a ticking time bomb for the rest of his life unless the disease develops and presents itself. Any way you look at this it would just add more stress and worry to the situation.
Now, to discuss hereditary. The way the pediatrician described it to me made so much sense. Now in science we have the technology to look at DNA. We can isolate any gene and research it until we are blue in the face. Any disease or disorder is a mutation. You will see it somewhere in the persons DNA. If the genes were immaculate, there would be no disease. Therefore, people with similar diseases will have similarly deformed or mutated genes whether they be family or not. So, hereditary is really an umbrella term. OK, hair color, eye color, physical appearance, etc. are all hereditary, but again it is just the same mutation in the DNA causing the differences or similarities in people. In this day and age we have access to so much knowledge.
Knowledge is good. Knowledge is power. But it can also lead to unnecessary hardships. Wake up with a sniffle one day and go to any search engine. Type in your symptoms and see what comes back. The likely cause of your sniffle may be a sinus infection or allergies, but the Internet may lead you to spinal cord leakage. A pimple in an unusual place on your body may lead you to some sort of cancer. These scary and highly unusual cases do happen or there would be no information on them. Unless there is some red flag pointing you away from the common, why allow your mind to go there. This goes back to the saying, "Only worry about what you can control".
That is something I need to be constantly reminded of.......what is not in my control is in God's hands.
The pediatrician went on to explain the signs and symptoms of Celiac Disease which I am well aware of due to my own experience and research. He continued with explaining a case he just diagnosed not too long ago in a one year old. He was reassuring me that he does realize this is a more common illness than previously thought and it certainly can develop or present itself early in life. His opinion of our son was not a potential case of Celiac Disease. When or IF a red flag arises we will address it then, but in the meantime adding stress to our plates as well as concerning our son and putting him through the testing is just not practical at this point. He was very open and left the final decision up to my husband and I. He realizes that his seeing our son for 15 minutes at a time every few months does not lead to "close relationship", but medically speaking he is sound.....we as parents have to be the ultimate judges.
End result? Hydro cortisone cream topically til rash subsides. Keep an eye out for a recurrence so, if necessary, we can isolate the allergen. In the meantime, we will continue living our lives as care free as we can. Live for today. Pray for tomorrow.
Thank God for pediatricians/ doctors who take time to care for their patients as opposed to looking at their bottom line. Thank God for children. They bring joy and innocence into this crazy world. Thank God for family. If we three weren't a team, these minor scares and major trials would be impossible. Thank God for today.
He came home from school on Monday with a rash. The rash persisted and did not respond to allergy medication orally or topically. I took him into his pediatrician yesterday with my heart set on getting him screened for Celiac Disease even if his opinion of the rash pointed him otherwise. I wanted a baseline, a warning, some sort of tangible evidence leading us to look for Celiac or let our guards down.
I have been extremely lucky with pediatricians for my son. This one in particular has followed him for about 4 years. He really takes the time to sit with me and explain his thinking when treating or diagnosing. His first impression of the rash was of course and allergic reaction to something. The good news, it does not look systemic. It looks more like a contact reaction. That means rather than him ingesting or inhaling an allergen that caused the rash, he rubbed up against something that caused the rash. This could happen even through clothing.
My son is an active child who gets in and out of anything and everything so this was no surprise to me. At home we use hypoallergenic everything, but at school or at the river or on the playground anything could be the cause. Considering he had a very active weekend outdoors and then went for his second day of school, I felt relieved thinking it could be totally random.
I still expressed my concerns about Celiac Disease. Explaining again to his doctor my medical history and our goal for catching things early for my son if need be. He acknowledge my concerns and gave his thoughts on it. In lay men's terms he essentially said these things are considered hereditary. Of course if someone in your family has cancer, or diabetes, or Celiac Disease, or heart disease than you are at a higher risk of developing it, but it is not a guarantee.
Yes, there is initial blood testing for Celiac Disease, but to actually have a diagnosis in place you must (according to the National GI guidelines) have a biopsy of your small intestine confirming the diagnosis. With the blood test there are two genetic markers they check as well as antibodies. If your genetic markers come back positive, that does not mean you have Celiac Disease or will get it just the same as for the breast cancer markers. Many women who have the genetic marker for breast cancer and a strong family history have a mastectomy as a precaution never knowing for sure if they would've ever actually developed breast cancer in their lifetime. Our pediatrician views Celiac Disease the same way.
A blood test for a small child is traumatizing enough. I don't even remember having my blood drawn until I was in my preteens, and that was devastating. Then, what happens if the markers come back positive? There is no pediatric GI doctor in our area so we would have to be referred 5 hrs away. Then our six year old would have to go through an endoscopy and a biopsy. Awfully dramatic for a preventative measure. Even at that, what if the markers are positive but he has no antibodies and the biopsy is clear.....then we see our son as a ticking time bomb for the rest of his life unless the disease develops and presents itself. Any way you look at this it would just add more stress and worry to the situation.
Now, to discuss hereditary. The way the pediatrician described it to me made so much sense. Now in science we have the technology to look at DNA. We can isolate any gene and research it until we are blue in the face. Any disease or disorder is a mutation. You will see it somewhere in the persons DNA. If the genes were immaculate, there would be no disease. Therefore, people with similar diseases will have similarly deformed or mutated genes whether they be family or not. So, hereditary is really an umbrella term. OK, hair color, eye color, physical appearance, etc. are all hereditary, but again it is just the same mutation in the DNA causing the differences or similarities in people. In this day and age we have access to so much knowledge.
Knowledge is good. Knowledge is power. But it can also lead to unnecessary hardships. Wake up with a sniffle one day and go to any search engine. Type in your symptoms and see what comes back. The likely cause of your sniffle may be a sinus infection or allergies, but the Internet may lead you to spinal cord leakage. A pimple in an unusual place on your body may lead you to some sort of cancer. These scary and highly unusual cases do happen or there would be no information on them. Unless there is some red flag pointing you away from the common, why allow your mind to go there. This goes back to the saying, "Only worry about what you can control".
That is something I need to be constantly reminded of.......what is not in my control is in God's hands.
The pediatrician went on to explain the signs and symptoms of Celiac Disease which I am well aware of due to my own experience and research. He continued with explaining a case he just diagnosed not too long ago in a one year old. He was reassuring me that he does realize this is a more common illness than previously thought and it certainly can develop or present itself early in life. His opinion of our son was not a potential case of Celiac Disease. When or IF a red flag arises we will address it then, but in the meantime adding stress to our plates as well as concerning our son and putting him through the testing is just not practical at this point. He was very open and left the final decision up to my husband and I. He realizes that his seeing our son for 15 minutes at a time every few months does not lead to "close relationship", but medically speaking he is sound.....we as parents have to be the ultimate judges.
End result? Hydro cortisone cream topically til rash subsides. Keep an eye out for a recurrence so, if necessary, we can isolate the allergen. In the meantime, we will continue living our lives as care free as we can. Live for today. Pray for tomorrow.
Thank God for pediatricians/ doctors who take time to care for their patients as opposed to looking at their bottom line. Thank God for children. They bring joy and innocence into this crazy world. Thank God for family. If we three weren't a team, these minor scares and major trials would be impossible. Thank God for today.
Tuesday, August 14, 2012
Celiac Scare Evokes Gratitude
The last few posts were a little dark. The last year has been so turbulent. I felt like I was literally in a downward spiral. A Facebook friend with some strangely insightful posts actually helped pull me out of it a little.....along with tons of support from friends and family. I am thankful to have them around to pick up the pieces as I fall. We all need that at some point in time. I am still picking up the pieces and finding my way back to peace and happiness, but I am definitely a lot closer than even a few weeks ago.
It is always darkest before the dawn.
Don't depend too much on anyone in this world. Even your shadow leaves you when you're in darkness.
Two quotes I cannot take credit for, but have certainly helped me out.
School is back in session so my 6 year old is off to first grade. I am amazed by how quickly time goes by. I look at him on a daily basis and thank God for the blessing my husband and I received. On my "not so good" days or when I am researching information for my health, I am constantly in aw of the miracle that is my son. There is no rhyme or reason, especially not scientific, that he is on this planet.......and yet somehow, he is here and thriving.
Yesterday, my wonderful little six year old came home with a rash on his belly and chest. He has never been a "sickly" child. He had RSV as a baby due to an outbreak in our city, but was treated at home and pulled through fabulously. He had tubes in both ears around 18 months, but that is relatively common. Rarely does he have a cold or the flu, and certainly never any skin issues. Due to my health, we use hypoallergenic everything in our household. I can't think of anything that would cause this rash.
Autoimmune diseases are hereditary. With thyroid disease and diabetes, I was told during pregnancy that he had no more than a 4% greater chance than the rest of the population of developing either of them. With Celiac disease it is recommended that all immediate family be screened after a diagnosis is confirmed. I have never had my son screened for any of these. I take him in for check ups regularly. His doctors know of my health history. I put my trust in the doctors until I have reason to feel otherwise.
At this point, I cannot help but worry about Celiac Disease for my son. He is a very picky eater as it is. I try to feed him as healthy as possible with his limited palate, even introducing nutrition shakes to supplement his dislikes. Going gluten free for this six year old will be a major challenge.
My sister and I have a mutual feeling about these types of situations. Prepare for the worst. Hope for the best. Both of us were diagnosed with Type I diabetes at the age of 20. We are three years apart. Our father had Type I diabetes for 30 years before succumbing to the complications. Our brains are hardwired to fear. So, as I sit here planning how to deal with this if my gut is right, I simultaneously praying for something mundane.
I am thankful that I am embarking on this journey before my son faces it. My hope is that he will never deal with any of the health problems I have, but I constantly prepare for the day where I will need to walk him through some of it. Today happened to be a day that I know for sure God is carrying me through my fear.
I am anxiously awaiting the school bell's ring this afternoon to take my little man to his doctor. To pass the time while he is at school, it is usual for me to get errands and chores done. I went to our local health food store today to get my staple vegan/ gluten free foods. I hung around the freezer a little longer and looked yet again at this vegan mint chocolate chip ice cream. Mint chocolate chip ice cream used to be my favorite.
As a child, my family and I would go to Baskin-Robbins and each pick out a flavor for them to pack in 1/2 gallon tubs. I remember my mom getting chocolate, my sister would get peanut butter chocolate, and I would get mint chocolate chip. I also remember plenty of arguments with my mom. "You're not supposed to eat the whole thing in one sitting!"
After 4 years of systematically taking things out of my diet, I have been left with very little. Especially considering I live in a small town in south eastern New Mexico where healthy eating is not on any one's radar. The local grocery stores rarely have what I need. We have this tiny little health food store that has very limited options. You must be creative. Not today. I grabbed this ice cream. NadaMoo Lotta Mint Chip. http://www.nadamoo.com/
After eating my usual lunch (same thing everyday to prevent symptoms) I grab a spoon and the pint of ice cream. I scraped under the lid first to feel the texture. I wasn't excited. The texture felt just like any other vegan/ gluten free ice cream. Uh-oh. First bite.......HEAVEN. I have to say it is better than any other brand I remember. I only had a few bites to prevent an upset belly later. I have to be very gentle on my system. But those few bites satisfied my sweet tooth, satisfied my ice cream craving, and didn't leave me wanting more. It has been nearly two hours and I am still feeling pretty well. This is a good sign.
What a relief! Not over a month ago, an alert on Facebook lead me to find out that Haribo gummy bears were gluten free. I rushed out to get them. About a year ago, Red Brick Pizza opened up in a nearby town. They serve gluten free dairy free pizza. A lot of people with Celiac Disease also have some sort of sensitivity to dairy whether it be lactose or casein or both. So, I evaluate my options and start to realize I am coming into a pretty good situation.
For most Celiac Disease sufferers fruits and vegetables are free foods. Meats are also generally good. Patients do need to be conscious of marinades and spices, but for the most part this is a safe food. Coconut, Almond, and Soy milk are all very accessible these days even at Wal-Mart. Frito-Lays, Hormel, Kraft, as well as many other companies are now listing gluten free products on their websites and on packaging. Not to mention the surge of more gluten free companies like Glutino and Pamela's in small selection in many stores. All you need is creativity and a willingness to change your habits.
As I have gone through these past few years, educating myself on every diagnosis and every treatment, I have learned so much (a blessing in itself). Being a new mother through a lot of it was actually beneficial. It keep my mind on what is important while giving me the will to change and fight. What you eat really does affect so much. The saying, "You are what you eat." is true.
Veganism is very difficult to follow, but is one of the healthiest ways to live. That means no animal products or by products consumed at all. Dairy in itself is very allergenic as well as inflammatory. Removing dairy from your diet works wonders. Gluten has been tied to autism, ADHD/ADD, and behavior problems in children. Many studies as well as personal stories report drastic changes for the positive just by eliminating gluten from your child's diet.
Now, the time is getting closer and closer for me to go pick up my son and take him to his doctor. No matter what the doctor's opinion on this mysterious rash is, I will request screening for Celiac Disease. I am confident, should the test come back positive, we will be able to help this picky eater learn new habits. I am at peace knowing I already have the knowledge to face this. And on a final note, I am hoping the rash is a minor irritation and the screening comes back negative. This has certainly made me reevaluate my own "difficult" situation. With so much good coming from something so difficult........is it really all that bad? or just a bumpier road to bliss?
I believe the latter more and more everyday.
It is all about how you react to a situation. Knowledge empowers the reaction.
It is always darkest before the dawn.
Don't depend too much on anyone in this world. Even your shadow leaves you when you're in darkness.
Two quotes I cannot take credit for, but have certainly helped me out.
School is back in session so my 6 year old is off to first grade. I am amazed by how quickly time goes by. I look at him on a daily basis and thank God for the blessing my husband and I received. On my "not so good" days or when I am researching information for my health, I am constantly in aw of the miracle that is my son. There is no rhyme or reason, especially not scientific, that he is on this planet.......and yet somehow, he is here and thriving.
Yesterday, my wonderful little six year old came home with a rash on his belly and chest. He has never been a "sickly" child. He had RSV as a baby due to an outbreak in our city, but was treated at home and pulled through fabulously. He had tubes in both ears around 18 months, but that is relatively common. Rarely does he have a cold or the flu, and certainly never any skin issues. Due to my health, we use hypoallergenic everything in our household. I can't think of anything that would cause this rash.
Autoimmune diseases are hereditary. With thyroid disease and diabetes, I was told during pregnancy that he had no more than a 4% greater chance than the rest of the population of developing either of them. With Celiac disease it is recommended that all immediate family be screened after a diagnosis is confirmed. I have never had my son screened for any of these. I take him in for check ups regularly. His doctors know of my health history. I put my trust in the doctors until I have reason to feel otherwise.
At this point, I cannot help but worry about Celiac Disease for my son. He is a very picky eater as it is. I try to feed him as healthy as possible with his limited palate, even introducing nutrition shakes to supplement his dislikes. Going gluten free for this six year old will be a major challenge.
My sister and I have a mutual feeling about these types of situations. Prepare for the worst. Hope for the best. Both of us were diagnosed with Type I diabetes at the age of 20. We are three years apart. Our father had Type I diabetes for 30 years before succumbing to the complications. Our brains are hardwired to fear. So, as I sit here planning how to deal with this if my gut is right, I simultaneously praying for something mundane.
I am thankful that I am embarking on this journey before my son faces it. My hope is that he will never deal with any of the health problems I have, but I constantly prepare for the day where I will need to walk him through some of it. Today happened to be a day that I know for sure God is carrying me through my fear.
I am anxiously awaiting the school bell's ring this afternoon to take my little man to his doctor. To pass the time while he is at school, it is usual for me to get errands and chores done. I went to our local health food store today to get my staple vegan/ gluten free foods. I hung around the freezer a little longer and looked yet again at this vegan mint chocolate chip ice cream. Mint chocolate chip ice cream used to be my favorite.
As a child, my family and I would go to Baskin-Robbins and each pick out a flavor for them to pack in 1/2 gallon tubs. I remember my mom getting chocolate, my sister would get peanut butter chocolate, and I would get mint chocolate chip. I also remember plenty of arguments with my mom. "You're not supposed to eat the whole thing in one sitting!"
After 4 years of systematically taking things out of my diet, I have been left with very little. Especially considering I live in a small town in south eastern New Mexico where healthy eating is not on any one's radar. The local grocery stores rarely have what I need. We have this tiny little health food store that has very limited options. You must be creative. Not today. I grabbed this ice cream. NadaMoo Lotta Mint Chip. http://www.nadamoo.com/
After eating my usual lunch (same thing everyday to prevent symptoms) I grab a spoon and the pint of ice cream. I scraped under the lid first to feel the texture. I wasn't excited. The texture felt just like any other vegan/ gluten free ice cream. Uh-oh. First bite.......HEAVEN. I have to say it is better than any other brand I remember. I only had a few bites to prevent an upset belly later. I have to be very gentle on my system. But those few bites satisfied my sweet tooth, satisfied my ice cream craving, and didn't leave me wanting more. It has been nearly two hours and I am still feeling pretty well. This is a good sign.
What a relief! Not over a month ago, an alert on Facebook lead me to find out that Haribo gummy bears were gluten free. I rushed out to get them. About a year ago, Red Brick Pizza opened up in a nearby town. They serve gluten free dairy free pizza. A lot of people with Celiac Disease also have some sort of sensitivity to dairy whether it be lactose or casein or both. So, I evaluate my options and start to realize I am coming into a pretty good situation.
For most Celiac Disease sufferers fruits and vegetables are free foods. Meats are also generally good. Patients do need to be conscious of marinades and spices, but for the most part this is a safe food. Coconut, Almond, and Soy milk are all very accessible these days even at Wal-Mart. Frito-Lays, Hormel, Kraft, as well as many other companies are now listing gluten free products on their websites and on packaging. Not to mention the surge of more gluten free companies like Glutino and Pamela's in small selection in many stores. All you need is creativity and a willingness to change your habits.
As I have gone through these past few years, educating myself on every diagnosis and every treatment, I have learned so much (a blessing in itself). Being a new mother through a lot of it was actually beneficial. It keep my mind on what is important while giving me the will to change and fight. What you eat really does affect so much. The saying, "You are what you eat." is true.
Veganism is very difficult to follow, but is one of the healthiest ways to live. That means no animal products or by products consumed at all. Dairy in itself is very allergenic as well as inflammatory. Removing dairy from your diet works wonders. Gluten has been tied to autism, ADHD/ADD, and behavior problems in children. Many studies as well as personal stories report drastic changes for the positive just by eliminating gluten from your child's diet.
Now, the time is getting closer and closer for me to go pick up my son and take him to his doctor. No matter what the doctor's opinion on this mysterious rash is, I will request screening for Celiac Disease. I am confident, should the test come back positive, we will be able to help this picky eater learn new habits. I am at peace knowing I already have the knowledge to face this. And on a final note, I am hoping the rash is a minor irritation and the screening comes back negative. This has certainly made me reevaluate my own "difficult" situation. With so much good coming from something so difficult........is it really all that bad? or just a bumpier road to bliss?
I believe the latter more and more everyday.
It is all about how you react to a situation. Knowledge empowers the reaction.
Friday, September 23, 2011
Celiac Disease "invisible illness"
1. The illness I live with is: Celiac Disease
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: I have no idea
4. The biggest adjustment I’ve had to make is: eliminating gluten
5. Most people assume: it is an allergy
6. The hardest part about mornings are: missing doughnuts
7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place
9. The hardest part about nights are: wanting cookies
10. Each day I take 12 pills & 8 vitamins: plus insulin
11. Regarding alternative treatments I: try to educate myself as much as possible
12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses. Except when I have a seizure in front of people.
13. Regarding working and career: It is not entirely due to Celiac Disease, but I am disabled
14. People would be surprised to know: Even a crumb makes me extremely ill
15. The hardest thing to accept about my new reality has been: I will never eat regular bread again
16. Something I never thought I could do with my illness that I did was: eat pizza
17. The commercials about my illness: more gluten free options are coming out, but no commercials about the disease
18. Something I really miss doing since I was diagnosed is: meatball subs
19. It was really hard to have to give up: gluten
20. A new hobby I have taken up since my diagnosis is: cooking and nutrition
21. If I could have one day of feeling normal again I would: eat spaghetti
22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial. Food is a bigger part of our lives than we think.
23. Want to know a secret? One thing people say that gets under my skin is: "Don't they have a pill for that."
24. But I love it when people: understand
25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow
26. When someone is diagnosed I’d like to tell them: Educate yourself and life becomes so much easier. I promise!
27. Something that has surprised me about living with an illness is: how painful contamination is
28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.
29. I’m involved with Invisible Illness Week because: Well, it was back in July. I just found this on a fellow blogger's sight and thought it was cool. (see sixuntilme.com)
30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!
Thursday, September 15, 2011
Taking control
I have amazed myself these past few days. I have been dealing with these illnesses and challenges for several years. They continue, it seems, to spiral and multiply. I am always left with a feeling of "What else?" and "How am I going to manage this one?"
Moving back from the city my husband and I went to college in was the best decision we could make. So many more answers have surfaced through small town doctors. The slow paced lifestyle decreases daily stress. The cost of living is definitely much more affordable which is crucial for a family dealing with long term medical needs. The only downfall is a lack of resources, especially when it comes to food options.
I have played with the idea of trying to find a way to make purchasing food more affordable and convenient in a place with very little resources. I have several different specialty doctors that I see about every 90 days, so I usually take the opportunity of traveling to their larger cities to purchase what I need. Although we have a local health food store, prices are high and options are limited. Since starting this blog, I have spent much more time on the computer and, with the help of some tech savvy family members, I am learning how to navigate technology a little better.
Let's be honest. I grew up in a generation where computers were brought into the home for personal use. The world wide web was introduced and online media and communications have exploded. My love for the outdoors, sports, and anything active has steered me away from the computer (or any technology for that matter). I suppose that is more of an excuse. It is probably more a matter of my own unwillingness to join the crowd. Either way, I am easing into it and obviously getting sucked in.
After months, if not years, of talking with friends and family about finding better options I came up with a plan several months ago to try to recruit businesses to come to our area. The idea stayed in my head all this time. Today, with the motivation of a dear family friend who also suffers from Celiac disease and lives in south east New Mexico not too far from myself, I decided to take the bull by the horns. I logged onto my favorite two health food stores sights (Whole Foods Market and Trader Joe's). Conveniently enough, they have "location request" tabs on their sites. I took complete advantage of those as well as sharing the idea through social media to generate a larger response. I also went to our city's website and submitted a "citizen's request for improvement". Who knew they had all these wonderful opportunities to speak your mind?
Granted, I imagine these may go unnoticed for some time. I am hoping that my local community will jump on my bandwagon to pressure these companies to explore our area. On another surprising note, the city contacted me within hours of my request. With a few questions and some suggestions, we ended with the decision that this idea would be taken to board members and city developers to see what can be done. Again, I realize this may never go anywhere, but I am pleasantly surprised by the quick response. People actually do care out there.
No matter how bitter the world seems these days, people are still humans and ultimately want to make life better for themselves. In doing that, we might just make the world a better place for our neighbor as well.
I am proud of myself for actually stepping out of my own comfort zone. I started a blog and began sharing some very intimate details of my life with the world hoping to find a connection and better lives. I have learned so much in the past few days about marketing, research, communication, as well as my own diseases......and technology too, I guess. Now, I have finally taken control of something that has had control of me for so long. I feel empowered and more motivated everyday. I am meeting new people everyday that are teaching me things about myself I never thought possible. I pray this journey continues because it is becoming a lifesaver.
Thank you God, all of my supportive friends and family, and the strangers enlightening me everyday. Everyone of you is making a difference.
Moving back from the city my husband and I went to college in was the best decision we could make. So many more answers have surfaced through small town doctors. The slow paced lifestyle decreases daily stress. The cost of living is definitely much more affordable which is crucial for a family dealing with long term medical needs. The only downfall is a lack of resources, especially when it comes to food options.
I have played with the idea of trying to find a way to make purchasing food more affordable and convenient in a place with very little resources. I have several different specialty doctors that I see about every 90 days, so I usually take the opportunity of traveling to their larger cities to purchase what I need. Although we have a local health food store, prices are high and options are limited. Since starting this blog, I have spent much more time on the computer and, with the help of some tech savvy family members, I am learning how to navigate technology a little better.
Let's be honest. I grew up in a generation where computers were brought into the home for personal use. The world wide web was introduced and online media and communications have exploded. My love for the outdoors, sports, and anything active has steered me away from the computer (or any technology for that matter). I suppose that is more of an excuse. It is probably more a matter of my own unwillingness to join the crowd. Either way, I am easing into it and obviously getting sucked in.
After months, if not years, of talking with friends and family about finding better options I came up with a plan several months ago to try to recruit businesses to come to our area. The idea stayed in my head all this time. Today, with the motivation of a dear family friend who also suffers from Celiac disease and lives in south east New Mexico not too far from myself, I decided to take the bull by the horns. I logged onto my favorite two health food stores sights (Whole Foods Market and Trader Joe's). Conveniently enough, they have "location request" tabs on their sites. I took complete advantage of those as well as sharing the idea through social media to generate a larger response. I also went to our city's website and submitted a "citizen's request for improvement". Who knew they had all these wonderful opportunities to speak your mind?
Granted, I imagine these may go unnoticed for some time. I am hoping that my local community will jump on my bandwagon to pressure these companies to explore our area. On another surprising note, the city contacted me within hours of my request. With a few questions and some suggestions, we ended with the decision that this idea would be taken to board members and city developers to see what can be done. Again, I realize this may never go anywhere, but I am pleasantly surprised by the quick response. People actually do care out there.
No matter how bitter the world seems these days, people are still humans and ultimately want to make life better for themselves. In doing that, we might just make the world a better place for our neighbor as well.
I am proud of myself for actually stepping out of my own comfort zone. I started a blog and began sharing some very intimate details of my life with the world hoping to find a connection and better lives. I have learned so much in the past few days about marketing, research, communication, as well as my own diseases......and technology too, I guess. Now, I have finally taken control of something that has had control of me for so long. I feel empowered and more motivated everyday. I am meeting new people everyday that are teaching me things about myself I never thought possible. I pray this journey continues because it is becoming a lifesaver.
Thank you God, all of my supportive friends and family, and the strangers enlightening me everyday. Everyone of you is making a difference.
Thursday, September 8, 2011
let's get educated
I woke up this morning, jumped on my computer, and was taken aback by the enormous response I got to starting this blog. Very exciting. Changes need to be made, and the only way for that to happen is for people to aware and working together.
I thought I might give y'all some layman's definitions of all the confusing terminology. Many of these diseases are not well know. I am not a professional. I am not a doctor or a scientist. I just consider myself a professional patient. I will post links to sites with professional/ scientific definitions.
I'll start with Hashimoto's. I was 13 when I got this diagnosis. At the time, the cartoon Hunchback of Notre Dame was in theatres. I always thought of the hunchback "Quasimodo" when I heard I had this. It is an autoimmune disease of the thyroid gland. Autoimmune diseases happen when your body's own immune system begins attacking healthy tissue instead of fighting invaders. The soldiers are the antibodies. Doctors can identify specific antibodies to diagnose different autoimmune diseases. The thyroid gland produces hormones that help regulate many things in your body, primarily your metabolism.
Next we move on to Type I Diabetes. Also, an autoimmune disease. Many people are familiar with diabetes in some sense because Type II is running amok. These are two very different diseases. Type I, formerly known as juvenile diabetes, is when the antibodies attack the beta cells in your pancreas that produce insulin. Insulin is a hormone that controls blood sugar levels. Type I diabetics require insulin injections on a daily basis. I personally use a pump. It is a device that has an infusion set that is attached to my abdominal area for a period of 3 days at a time. It is the size of a pager, and it works very similar to a pancreas. I just manually tell it what to do with buttons. This is the greatest invention, in my opinion, because it prevents me from having to do multiple injections everyday.
The next diagnosis I heard was Interstitial Cystitis. This is not something I would normally, openly talk about. When it comes to health issues, however, there should be no shame. No judge zone. It is not our fault. Again, this is an autoimmune disease. In this case, the lining of your bladder is attacked. This can reduce or destroy the mucus lining. The bladder fills with urine, as every body's does, and without the protection of that lining, the acidity causes lesions and ulcers. You could imagine, this is a painful process. In some cases, nearly debilitating. This disease actually goes through active times and times of remission. Thankfully for me, I have been in remission for about 11 months at this point. Remission can last anywhere from a few days to a few years. Treatment is usually oral medication.
At this point, you may be thinking "do autoimmune diseases come in clusters?" Well, some do. Many patients with autoimmune disease have 2, 3 or 4 different diseases. To my knowledge, that is the typical max. In my case, overachiever that I am, I didn't stop at 3. We fast forward to the diagnosis of epilepsy. Epilepsy is not an autoimmune disease, however it is chronic. That means I will have it for the rest of my life. As are all the autoimmune diseases. There is no cure. Epilepsy is simply defined as having more than one recorded seizure in the span of one year with no obvious cause such as head trauma or high fever. I personally have grand mal, petit mal, and partial complex seizures. We have not found a cause at this point.
On to another autoimmune disease? Yes, we are. Celiac disease happens when antibodies attack the lining of the small intestine causing damage when patients ingest gluten. Gluten is a protein found in wheat, rye, and barley. Celiac patients are warned to avoid oats, due to the fact that oats are usually processed in the same facility as the other grains. There is a difference between an allergy to gluten, an intolerance to gluten, and full blown celiac disease. Full blown celiac disease can cause severe reactions to the consumption of gluten. A digestive issue that is certainly not fun!
Celiac disease can cause malnutrition to the point of effecting other body symptoms and creating widespread symptoms. When these symptoms didn't slow even with eliminating gluten completely, it was determined that I definitely had a connective tissue disease. It has been classified as undifferentiated, mixed, and full blown lupus. Depending on the doctor and the test results. It is considered a rheumatological disease. That covers many autoimmune disease. Rheumatological diseases are more difficult to identify because the antibodies are not always present when patients are tested. It is usually a combination of signs, symptoms, and blood tests that give the diagnosis. Whatever you call it, a connective tissue disease is just what it sounds like. Any connective tissue in your body (skin, bones, ligaments, tendons, etc.) can be attacked and damaged. Treatment is usually steroids, anti-inflammatory medications, anti malaria drugs, or immunosuppressants. This is where things get complicated. Steroids can greatly affect blood sugar so they are not recommended for diabetics. Anti-inflammatory medications usually cause some sort of digestive reaction so celiac patients cannot use them. It can cause ulcers, stomach bleeding, and even cancer. Immunosuppressants can cause liver and kidney damage so they are not typically recommended for lupus patients or diabetics. So I currently take an anti malaria medication. I am not sure what the science behind it is, but it seems to slow symptoms and make them bearable. Whew, I'm getting tired just laying this all out. Hahaha
In the mix of all that I was diagnosed with an infection I mentioned yesterday called disseminated histoplasmosis. Please read this whole paragraph. I know what my initial reaction to the explanation was, and it was not pleasant. Histoplasmosis is a fungus. Mold and fungus spores fill our breathing air everyday. We inhale these all the time. Most often they are filtered out or the bodies immune system attacks them before we even know we've inhaled them. Often time healthy people will get a cold or chest congestion for about 2 weeks if they get histoplasmosis, but the body deals with it. In a person with a suppressed or compromised immune system it can be much worse. The fungus gets inhaled into the lungs and begins to grow spores. Eventually it spreads throughout the body, dissemination. It is not contagious. It can cause brain damage, lung problems, spinal problems, skin lesions, etc. The treatment usually consists of a strong anti fungal taken for about 1 year. There is a chance of relapse after the year of treatment, but that is rare.
We move on to the final diagnosis of Pernicious Anemia. This apparently is when antibodies attack the lining of the stomach and prevent the body from absorbing vitamin B12. B12 is important for the central nervous system. We get b12 from animal products mostly. With a deficiency, patients feel tired and weak. They often have nausea and vomiting because the nerves are being damaged in the stomach lining. With B12 injections, these symptoms usually disappear fairly quickly. In times of high stress, whether it be physical or emotional (even excitement), it is recommended that patients increase their B12 to prevent symptoms from returning.
We are now currently awaiting an evaluation for yet another autoimmune disease. Appointments are coming in the following weeks so I will fill you in as I get information.
To end on an inspiring note: I decided to call this "Antibody Ninja Girl" as an homage to my beautiful, amazing angel of a son. He has a difficult time seeing his mother go through so much. He feels helpless, but just wants to make things better. He has taken on an very strong interest in super heroes. To ease his anxiety about his environment he is constantly saving the world! It is adorable, and he is certainly heroic. If he believes super heroes can change the world, let's give it a shot. These antibodies are like ninjas in the night sneaking in and destroying healthy tissue in my body. We are out to end their destruction. Join me in the fight. Power to the people. Hahaha ok that's a little dramatic, but you gotta laugh at the little things in life. That's what makes it all worth while.
Here are some links for real information
I thought I might give y'all some layman's definitions of all the confusing terminology. Many of these diseases are not well know. I am not a professional. I am not a doctor or a scientist. I just consider myself a professional patient. I will post links to sites with professional/ scientific definitions.
I'll start with Hashimoto's. I was 13 when I got this diagnosis. At the time, the cartoon Hunchback of Notre Dame was in theatres. I always thought of the hunchback "Quasimodo" when I heard I had this. It is an autoimmune disease of the thyroid gland. Autoimmune diseases happen when your body's own immune system begins attacking healthy tissue instead of fighting invaders. The soldiers are the antibodies. Doctors can identify specific antibodies to diagnose different autoimmune diseases. The thyroid gland produces hormones that help regulate many things in your body, primarily your metabolism.
Next we move on to Type I Diabetes. Also, an autoimmune disease. Many people are familiar with diabetes in some sense because Type II is running amok. These are two very different diseases. Type I, formerly known as juvenile diabetes, is when the antibodies attack the beta cells in your pancreas that produce insulin. Insulin is a hormone that controls blood sugar levels. Type I diabetics require insulin injections on a daily basis. I personally use a pump. It is a device that has an infusion set that is attached to my abdominal area for a period of 3 days at a time. It is the size of a pager, and it works very similar to a pancreas. I just manually tell it what to do with buttons. This is the greatest invention, in my opinion, because it prevents me from having to do multiple injections everyday.
The next diagnosis I heard was Interstitial Cystitis. This is not something I would normally, openly talk about. When it comes to health issues, however, there should be no shame. No judge zone. It is not our fault. Again, this is an autoimmune disease. In this case, the lining of your bladder is attacked. This can reduce or destroy the mucus lining. The bladder fills with urine, as every body's does, and without the protection of that lining, the acidity causes lesions and ulcers. You could imagine, this is a painful process. In some cases, nearly debilitating. This disease actually goes through active times and times of remission. Thankfully for me, I have been in remission for about 11 months at this point. Remission can last anywhere from a few days to a few years. Treatment is usually oral medication.
At this point, you may be thinking "do autoimmune diseases come in clusters?" Well, some do. Many patients with autoimmune disease have 2, 3 or 4 different diseases. To my knowledge, that is the typical max. In my case, overachiever that I am, I didn't stop at 3. We fast forward to the diagnosis of epilepsy. Epilepsy is not an autoimmune disease, however it is chronic. That means I will have it for the rest of my life. As are all the autoimmune diseases. There is no cure. Epilepsy is simply defined as having more than one recorded seizure in the span of one year with no obvious cause such as head trauma or high fever. I personally have grand mal, petit mal, and partial complex seizures. We have not found a cause at this point.
On to another autoimmune disease? Yes, we are. Celiac disease happens when antibodies attack the lining of the small intestine causing damage when patients ingest gluten. Gluten is a protein found in wheat, rye, and barley. Celiac patients are warned to avoid oats, due to the fact that oats are usually processed in the same facility as the other grains. There is a difference between an allergy to gluten, an intolerance to gluten, and full blown celiac disease. Full blown celiac disease can cause severe reactions to the consumption of gluten. A digestive issue that is certainly not fun!
Celiac disease can cause malnutrition to the point of effecting other body symptoms and creating widespread symptoms. When these symptoms didn't slow even with eliminating gluten completely, it was determined that I definitely had a connective tissue disease. It has been classified as undifferentiated, mixed, and full blown lupus. Depending on the doctor and the test results. It is considered a rheumatological disease. That covers many autoimmune disease. Rheumatological diseases are more difficult to identify because the antibodies are not always present when patients are tested. It is usually a combination of signs, symptoms, and blood tests that give the diagnosis. Whatever you call it, a connective tissue disease is just what it sounds like. Any connective tissue in your body (skin, bones, ligaments, tendons, etc.) can be attacked and damaged. Treatment is usually steroids, anti-inflammatory medications, anti malaria drugs, or immunosuppressants. This is where things get complicated. Steroids can greatly affect blood sugar so they are not recommended for diabetics. Anti-inflammatory medications usually cause some sort of digestive reaction so celiac patients cannot use them. It can cause ulcers, stomach bleeding, and even cancer. Immunosuppressants can cause liver and kidney damage so they are not typically recommended for lupus patients or diabetics. So I currently take an anti malaria medication. I am not sure what the science behind it is, but it seems to slow symptoms and make them bearable. Whew, I'm getting tired just laying this all out. Hahaha
In the mix of all that I was diagnosed with an infection I mentioned yesterday called disseminated histoplasmosis. Please read this whole paragraph. I know what my initial reaction to the explanation was, and it was not pleasant. Histoplasmosis is a fungus. Mold and fungus spores fill our breathing air everyday. We inhale these all the time. Most often they are filtered out or the bodies immune system attacks them before we even know we've inhaled them. Often time healthy people will get a cold or chest congestion for about 2 weeks if they get histoplasmosis, but the body deals with it. In a person with a suppressed or compromised immune system it can be much worse. The fungus gets inhaled into the lungs and begins to grow spores. Eventually it spreads throughout the body, dissemination. It is not contagious. It can cause brain damage, lung problems, spinal problems, skin lesions, etc. The treatment usually consists of a strong anti fungal taken for about 1 year. There is a chance of relapse after the year of treatment, but that is rare.
We move on to the final diagnosis of Pernicious Anemia. This apparently is when antibodies attack the lining of the stomach and prevent the body from absorbing vitamin B12. B12 is important for the central nervous system. We get b12 from animal products mostly. With a deficiency, patients feel tired and weak. They often have nausea and vomiting because the nerves are being damaged in the stomach lining. With B12 injections, these symptoms usually disappear fairly quickly. In times of high stress, whether it be physical or emotional (even excitement), it is recommended that patients increase their B12 to prevent symptoms from returning.
We are now currently awaiting an evaluation for yet another autoimmune disease. Appointments are coming in the following weeks so I will fill you in as I get information.
To end on an inspiring note: I decided to call this "Antibody Ninja Girl" as an homage to my beautiful, amazing angel of a son. He has a difficult time seeing his mother go through so much. He feels helpless, but just wants to make things better. He has taken on an very strong interest in super heroes. To ease his anxiety about his environment he is constantly saving the world! It is adorable, and he is certainly heroic. If he believes super heroes can change the world, let's give it a shot. These antibodies are like ninjas in the night sneaking in and destroying healthy tissue in my body. We are out to end their destruction. Join me in the fight. Power to the people. Hahaha ok that's a little dramatic, but you gotta laugh at the little things in life. That's what makes it all worth while.
Here are some links for real information
Hashimoto’s Disease www.edocrine.niddk.nih.gov/pubs/hashimoto-thyroiditis.cfm
Type I Diabetes www.diabetes.org
Interstitial Cystitis www.ichelp.org
Epilepsy www.epilepsyfounation.org
Disseminated Histoplasmosis www.mayoclinic.com/health/histoplasmosis/DS00517
Undifferentiated Connective Tissue Disease www.hss.edu/conditions_14568.asp
Celiac Disease www.celiac.org or www.digestive.niddk.nih.gov/ddiseases/pubs/celiac
Pernicious Anemia http://www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/
Autoimmune diseases aarda.org
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