Reading Forums of Others With Dermatomyocitis Hmmm...

So I wanted to offer some perspective about this disease and just autoimmune diseases in general. I really think a lot of the emotions going on in these comments are similar to the emotions going on in many other disease and in some degree to all diseases. As everyone knows, it is always helpful to look at people with the same illness for emotional support and treatment options. For instance, should I be on the traditional treatment? This is a good question. I just copied and pasted this from this site: http://www.dailystrength.org/

"Hi Everyone,
I've had dermatomyocitis for the past two and a half years. I was diagnosed at 19. I should have joined a site like this a long time ago, instead Ive really let things get to me and have been near suicidal at points, which scares me because I am only about 3 years in and do not know how I am going to make it the rest of my life if I can not handle 3 years. I am not super depressed or anything right now. I'm actually feeling good, I do get super depressed when I am on Methotrexate. Does this happen to anyone else? It literally makes me crazy. I was on the shot but couldn't do it anymore. It made me sick, and I couldn't even look at the color yellow with out wanting to vomit. Just talking about chemo makes me sick to my stomach. I am "on" the pill form now. I put that in air quotes because I do not take it like I should. Im supposed to take it weekly. But havent for months, which is why I haven't been depressed. I hate lying about my medicine to my mom and doctor, but the stuff makes me incredibly depressed. I do not want to be near suicide again, and when I'm off it im fine. When I do take it, I have a nervous breakdown and cry hysterically, and am then sick for at least 3 days afterword. I can not eat or do anything but feel sick to my stomach and start brooding over life, which makes me feel worse because I know there are people who are a lot more sick than me. Does anyone take another medicine besides Methotrexate? My body is going to fall apart if I do not start taking it again, yet my problem with Methotrexate is so bad that I'd almost rather be paralyzed from this than take it. I've always had a really sensitive stomach (I can't swing on a playground swing) lol. Any help would be very much appreciated. Thanks for listening to my long ramble."

So I am randomly interjecting here inbetween these forum comments. :p Now obviously this girl above is struggling. She does not want to take her medicine because of the side effects on her mood. Obviously she cannot live a lifetime feeling suicidal on these drugs...the comment below seems like a natural next step to her difficulties...

"I would tell your doctor that the meds make you sick and maybe they can give you a combination of things or something that is easier on your stomach. I tried to not take meds for Dermatomyositis and it affected my lungs so, now i will take meds for the rest of my life. I take prednisone and imuran. I am sure they can come up with something that will help you. Good Luck! The side effects might wear off after being on the meds a few weeks. "


So perhaps if the combination of the drugs are changed she can have the positive effects of the drugs with less of the side effects? This is a possibility. The most important aspect of this comment is the warning it gives. Autoimmune disease can affect the lungs! Not being on the drugs puts one at a risk of this happening to them. Of course being on the drugs there is still as risk of this happening as well. If the proper alternative treatment is being undergone perhaps all of this can be avoided. How does one know if they are on the proper alternative treatment? These are all good questions. For me I have been feeling better, so I know something positive is happening in my body. My ANA is still quite high though despite all of my other improvements. Of course there is always the chance that I am making the wrong decision. I always say, if I was getting worse then I would know I was doing something completely wrong. So far I have not gotten worse that I can tell or that my lab tests tell.

"Hi,
I have lupus and APS and am on the injectible form of MTX right now (which isnt working well). I don't get side effects from it like you do, but I'm really scared to try another chemo drug if this one doesn't work. My advice to you is to speak to your dr. about switching to a new med because it is VERY important to take your meds and control your immune system. It will only get worse for you if you dont and you are so young....There are other meds out there that may not make you as sick and will help control your disease. When it gets out of control, like my disease's are, its much harder to control them. Imuran may be better for you. Plaquenil may even help (not sure if that is used for Poly). Im on 3 immuno suppressants and still sick (plaquenil, predsnisone and MTX). Not sure if I have Polymyositis but I have severe muscle issues right now. You really need to tell your dr. whats going on so they can try you on something else. They will try you on something until they find the right med for you. Also, they can prescribe you anti-nausea meds to take with any chemo type drug that can help with your stomach problems. Hang in there and please call your dr.
Hugs"

Another perspective and another experience. These autoimmune diseases are perdy scary folks! Goodness! DD:...

"TAKE CHARGE!! Tell your doctor no more! You are the one in the drivers seat. You are the one responsible for your medical care, not doctors, nurses, ect. I tried every "treatment" the doctor told me I should. ALL of them made me worse.

Not hear to preach or wave some weird naturalistic lifestyle in your face, but I stopped eating processed foods and started to eat healthy. Six months ago I was preparing to die, today, there may be hope.

I told my doctor no more drugs like chemo, or steroids or immune suppressants. He was fighting me all the way, until one day I could get out of the chair in his office by myself. He is on board now. We work together, and we talk things through together.

If your doctor does not listen to you, I say walk away. Go find a doctor that will listen to you, and take how these terrible drugs make you feel into consideration."

And then this comment. Hmmmm...Whenever the drugs seem to completely and utterly fail that is when I generally see people going more holistic. And she can get out of the chair now by herself when she is off the medications and eating better. Interesting.


IT'S A LOT TO THINK ABOUT! IT'S ALSO VERY INTERESTING TO SEE THE POWER OF DIET. IT'S ALSO SCARY TO SEE THE DISEASE AFFECTING SOMEONE'S LUNGS.


Holy smokes! It really is a lot to think about!

A VARIETY OF DIFFERENT TREATMENTS FOR AUTOIMMUNE DISEASES :)))

Well a friend in my National Guard Army Band, Leanne told me about this documentary called Fat, Sick, and Nearly Dead. It's a true story about an Australian guy named Joe Cross who suffered from a debilitating autoimmune disorder called Urticaria. I don't know a whole lot about that particular autoimmune disorder except that it causes itchy rashes on the skin. Different things can trigger the outbreak such as the cold, touch, and anything that causes a histamine response. That sounds pretty horrible to me. He was on the traditional medicine that one with an autoimmune disorder is prescribed, Corticosteroids and Methlotrexate. He was also very overweight. It sounded like that was because of his diet, but I'm sure the meds did not help that situation. Also while on the medications he still had outbreaks, poor guy. Now he actually cured himself with a juice fast. And that's the basis of the whole documentary. He also ran into a guy along the way at a truck stop named Phil. Phil ended up trying the juice fast as well and after a lot of discipline and a lot of juice lol, his Urticaria went into remission as well. AWESOME! :DDD Here's his website: http://jointhereboot.com/


In my opinion the documentary is worth watching for everyone, even if they are not currently sick. It is very motivational! I have to tip my hat to Joe Cross and Phil Staples. That juicing diet can feel very socially isolating! It takes a lot of discipline. Good job guys! I am so glad they were rewarded for their efforts. :))


Now this documentary was shocking to me and was not shocking to me at the same time. A while back while I was very sick and waiting through many months of testing to find my diagnoses my condition kept worsening. That's when I decided to partake in self research. I truly had nothing to lose. I ran across this woman's article. She used a vegetarian diet and carrot juicing along with a lot dose antibiotic which is part of Doctor Brown's antibiotic therapy: http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/397.html
 I ordered the book.


The story about Dr. Brown's therapy in the link above is really quite the read. Dr. Brown discovered that a low dose antibiotic was effective even when tested with double blind studies done by The National Institute of Health. Effective enough where people have actually achieved remission on the antibioitics. Not everyone does, but many benefit some from the antibiotics in significant ways. We are dealing with debilitating diseases here. Diseases that leave people wheelchair bound. It seems worth a shot, especially when the treatment here is a low dose of minocycline. That's the same antibiotic that people often use for acne actually. This thereapy is not common practice though.


Quoting the article, "Not everyone was surprised. When Tom Brown had made his final television appearance on Good Morning America back in 1988, Joan Lunden said his approach to arthritis was "turning the medical world upside down." His answer was a quiet, "I'm trying to turn it rightside up." I have met several of Tom Brown's patients who have controlled their connective tissue disease with minocycline for decades, and the only other effect they ever noticed was that they almost never were bothered by the common cold."


Too bad this therapy was not mentioned to me by my rheumatologist. Hmmm...I wonder why. Really, I do wonder why! Nothing against anybody, I just really am curious.


Here is Karen's story: http://www.roadback.org/index.cfm/fuseaction/community.display/display_id/267.html


To sum up Karen's story, she was working in a factory where a handful of people came down with rare autoimmune disorders. I believe one of them died, but possibly two of them. She personally was diagnosed with Lupus and Dermatomyocitis and gained remission while on the corticosteroids. But after a while her symptoms flared up, her symptoms became horrifically intense and she found herself in the hospital, not responding to the traditional treatment. That is what lead her to use alternate treatment, incorporating diet, supplements, and a low dose antibiotic. I also want to add that when I emailed her questioning her about her article she responded the very next day. She also wrote me a huge, compassionate email. She was so nice! I am very glad that she has been in remission for 5 years after her tough experience! I hope to follow in her direction.


I am possibly going to follow this form of treatment. Currently I am trying to get rid of a strep throat infection. That's a whole story in itself....
......
...
........anyways...
It's actually doing pretty well right  now, but it is an interesting story thus far.


One more study that I'd like to share here is what got me interested in Celiac Disease possibly being a cause to my disease. I found a research study from Quebec in which a woman with Dermatomyocitis gained remission on a gluten free diet.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659927/


I remember finding this study I ran downstairs, showed it to my roommate, and began jumping up and down. lol Wouldn't you????!!! :))


Quoting the article, "After she was put on a strict gluten-free diet, both nutritional deficiencies and the dermatomyositis resolved... It is suggested that patients with newly diagnosed dermatomyositis be investigated for concomitant celiac disease even in the absence of gastrointestinal symptoms."


So all of this is pretty cool isn't it?? :p

Dating and Sickness

Well I'd like to dedicate this blog entry to my current boyfriend because of all that he has done for me thus far. I appreciate it forever regardless of whatever happens to our relationship status in the future. I know the future cannot be predicted nor do I even want to attempt to do so. But past actions have already been solidified and I am grateful. 


When I was first diagnosed with Dermatomyocitis all I could think of was wow, I will never date again. My thoughts were very negative. I was kind of surprised by how much the thought of not dating crushed me. Me, the human and social animal that I am found this topic to be on the forefront of my mind.


I then had a long conversation with one of my best friends Amy. She told me that she would date someone in a wheelchair. I joked that they would really have to like my personality and be able to bare my massive amount of talking.


You hear about those movie romances when it is usually the girl who is dying. And the man is some kind of noble stallion who makes her last days on earth some magical, lovey dovey experience.
Meh...lol- I was never into that type of experience so much.


I would much rather have this disease and die in some research lab with crazy scientist hair. Ahhh, that's a much more satisfying way to go for me. But better yet! How about I gain remission and have an energy filled, youthful relationship full of hugs, happiness, the occasional dissonance, and a new found life of being health conscious with my partner? That sounds much more romantic to me!


You meet people when you meet them and even if you didn't intend to date someone because of whatever chaos was going on in your life at the time. Sometimes you put that aside and just go with your feelings. Everyone deserves their little peace of pie. Even if it's a gluten free pie, right?
Right.
RIGHT! Now that's the enthusiasm I'm looking for here, sometimes I just need a little self motivation.
Hoooorayyy, hooorayyyy!! :DDDD


HhhHhhMMmmmm...of course everyone is different, not everyone is comfortable being with someone sick. Also if they are first meeting you, such heavy news can be the easiest way to put a giant hault onto the, "Hi, I'm Mary Lou and I like chocolate and the color blue," stage. How To Lose a Guy in 10 days?? How about how to lose a guy from the time it takes you to finish one sentence depending on how fast you talk?? Errr. Of course this is not always the case.


Although meeting a guy who understood me telling him on the first date that I had been diagnosed with a degenerative muscle disease that was getting better, but that could possibly not get better was quite the enlightening experience. Especially for this at times cynical person over here. It did make me think, maaaan, what has this poor guy gone through in his life to be so understanding?? And yeah I was right, he has had quite the trouble and tribulations beyond in certain ways what I can even understand, that have given him the compassion that he possesses. But aside from his experiences, I think it is just his personality type to be with someone for who they are and not necessarily because or not because of their current situation.


I thought it best to tell him on the first date. Not everyone agreed with me on this of course. But I thought that if it scared someone away then at least I could have some peace of mind that I was not leading them into a potentially serious situation that they were not aware of. It put me at ease during the dates as well. I was not carrying the uncomfortable burden of such potentially potent information.


Now aside from all of the emotional baggage that having such a diagnoses can bring, as we began to date I learned just how difficult having celiac disease can make dating. Well for one I cannot eat at any restaurants comfortable and without a potential risk of cross contamination or the chance that something might not actually be gluten free. So there goes half of the easiest date out there, dinner and a movie. I can still do the movie part! :p
Ok, how about grabbing drinks at a bar? Nadda.
That romantic glass of wine?? Nope.
Cutsie putt putt and some ice cream? :DD No, no, no on that ice cream!!


Not that gluten free alcohol does not exist, but my body is still in a major healing process. Alcohol really is not something that I can do on a consistant basis or really even at all. I've realized how awful I feel after drinking it. I'm out for a good couple days with some major fatigue. That last glass of wine I had lead me to the bathroom. I don't think that I could handle all of that sugar. My body is not quite ready yet.


Now onto the good stuff, kissing! Wait?? This becomes a problem to. Yes sirey! It's that cross contamination. Ohhh and how about kissing other places aside from smoochin on the lips? Yeah that's another thing.
So before kissing it is necessary for your partner to brush and floss in gluten free products to rid their mouth of gluten, to not gluten you. Also they must bath in gluten free products and use gluten free deodorant
I learned the hard way with many trips to the bathroom and many of my original symptoms coming back! It was very scary. But as soon as he switched products and began brushing his teeth before kissing me things got a lot better. It was like clockwork.


So it was difficult to ask him to make such a change, but he did it without a problem. Although I know he misses his deodorant and the scent that accompians it, which he became accoustomed to. Now both of us don't smell like body odor, but we do smell unscented and just like ourselves with no fancy fragrance. It is pretty interesting to smell your own scent honestly! I do like his natural scent!


So when it comes to dates what do we do? Well we don't do dinner, but we do partake in a lot of other fun activities.
We went blues dancing.
To the park.
We watch movies. We had a bad movie night, that was fun.
We watch documentaries (health ones that I request him to download :p)
We played mario.
Hang out with friends.
Attend philosophy club meetings.
Went rollerblading.
We talked about taking a yoga class together.
Painted pottery.
Go to concerts.
We drove around and flipped a quarter, letting heads or tales pick where we would end up.
Played arcade games.
Went camping.
I'm sure there's more, but I can't think of it.


So there's plenty of opportunies to do other things aside from the traditional going out to eat.
You just have to work a little harder to think of things.


Now I think the hardest part about dating someone when you are sick is just dealing with the emotional aspect of the illness. I want to get better so badly that sometimes I get really upset when I am not at my full energy and mobility that I was at before. It is easy to focus on what one does not have. It is also easy to take out the stress that dealing with the illness brings on another person who is just trying to be there for you.
Sometimes I think that I should be dealing with this illness on my own, that I don't want to suck someone into the despair that I sometimes feel. He watched a health documentary with me that was rather inspiring. Multiple people with autoimmune diseases getting remission.
It is good to have someone willing to listen, but you have to keep a positive attitude. I need to say this to myself. I have to keep a positive attitude. And a positive attitude is always better when there is truth to it. If one is doing things to better their health and to learn about their health then it makes it easier to have a positive attitude. Learning and moving forward is always the answer. Not all illnesses have ever had someone gain remission, but it doesn't mean that they never could. There was a time when many people died of the common cold. Hence our friend penicillin.

Yes one's illness may impact one's life greatly. BUT YOU ARE NOT YOUR ILLNESS.
You are YOU. :)
Don't let the sickness take away your life. Take control of your sickness. And in times of difficulty, when the illness seems to be taking over life. Allow healing time, but do not ever fully submit to the illness. Fight it, learn about it, and try to defeat it.
Never give up.
You deserve your life.
Not a long miserable one.
But rather a high quality one, that has soaked up the opportunities of joy and allowed oneself open to recieving that joy. A beaten down, cynical attitude is not the proper environment to receive that joy that makes life sweet.
Stay strong.
Make jokes.
And when in doubt, watch a lot of silly youtube videos!!

My angry, bitter stage.

The truth if this diagnoses is correct, I am partially disabled. But it's invisible and working out may actually tear and degenerate my muscles faster.


Not all of my muscles, only the one's mainly affected by my disease. It leaves me not able to work out at all. Granted I am not in a wheelchair. But I don't know if I'll end up in one. It may be sooner than I could have ever imagined.


There is a chance that this treatment will fail.
Or maybe I will end up dying of cancer like a lot of people with my disease. For some reason dermatomyocitis and cancer are often associated.


*BUT* Perhaps they are associated because of celiac disease, which has been shown to be an underlying cause of cancer and now being on a gluten free diet my risk for cancer has greatly decreased?? Perhaps I will fight off this strep, heal my stomach, and my disease will go into remission. I will then take all of this knowledge that I have gained about being healthy and become a for life health nazi. This of course is my ideal scenario.


Wouldn't it be nice.


It would really.


I don't think I've truly accepted the fact that I might not get better. Like I'm in some massive, epic state of denial. It leaves me working hard at trying to get better. It's nice to know there really is a chance, considering I've emailed a woman in Florida with my disease who received remission due to diet. Her take on it was a bit different than the one I am following now. Which is interesting!


Am I convinced still that I am going to die young? I don't think so. I really don't think this is going to happen. Based on a lot of gained knowledge. Based on the amount of improvement.


It's really like a puzzle! A time sensitive puzzle at that. But a puzzle. I do believe it is possible to solve a lot of the mysteries of health. How long each different disease would take, I obviously have no idea.


So I became angry. Really angry at the whole idea of major struggles, some of them being permenant. Wondering why there is so much suffering in the world. And such unequal suffering. Not that I want other people to have to go through what I went through, although I have gained from it. But really, if I live an entire life like this...I just don't think that it is necessary to teach me all that I can learn from this disease. I'd really like my energy back eventually. I'd really like my full mobility back. I put a great deal of effort into being energetic around people, but it's a struggle. I get home and I am really tired. I look at perfectly abled people not using their bodies. People who never really enjoyed being active. But me, I enjoyed being active! I felt an intense passion in being active. I snowboarded, ran, joined the military, worked out, dreamed of climbing a mountain someday, wanted to go backpacking, wanted to run a marathon someday, enjoyed swimming. I am in the process of possibly being kicked out of the military because I cannot pass a physical fitness test. I know I shouldn't feel this way, but it makes me feel shameful. It makes me feel inadequate. Am I going to be able to be a floor nurse a few years down the line?? Possibly not if this disease progresses. Yes I am currenlty a nurses aid, that is a lot of lifting. This disease makes my job twice as hard. But it's all invisible. And sometimes I cry and sometimes I look at the sky and wonder why the world that brings me so much joy can be such a hellish misery at times.
It's perspective? Perhaps. But look at the quadriplegic. Is that quality? I'm not a quadriplegic so I really have to say no. But hey I'm a different person than any other person out there and I have never experienced that type of what I would call suffering. Yes I have suffered. But nothing to that extent. I wonder if there is a quadriplegic out there who is happier than a completely abled person? For some reason I think I can answer yes to that question. 


The band the Postal Service.
"Let me please interject here. You're getting carried away feeling sorry for yourself."
Even Michael J. Fox, the man with a disease who up to this point up to my knowledge has never had a case go into remission. Parkinsons disease. He still named his book, Lucky Man. But what is his raw emotion really, what are his thoughts in his lowest moments? And then again there is Hunington's disease. That's a pretty horrible disease. A woman in the nursing home I work at has it. She used to work a full- time job. She used to live a normal life. Now look at her. What are her raw emotions. Both of these diseases take one's mind as the disease progresses. What are the last raw, completely genuine thoughts of people before the disease takes their mind?
Let me say it again.
Let it ring.


"Let me please interject here. You're getting carried away feeling sorry for yourself."


Paraphrasing here, but Fox stated if only my body was where my mind is now.


Disease does make one a better person on the inside, even if they are projecting outwardly in at times a negative and angry way. It matures. It breeds intense compassion and understanding. A time is fleeting and our existence really is tenuous. Just in case you forgot because it is easy to do. Even if one believes in heaven, what does that entail exactly? I guess if it's heaven it's supposed to be good right? In my opinion there is a lot of mystery in this world.


That then turns me to ask another question. Can I be happy with whatever time I have left on this earth, even if it is not my most desired quality? Yes, yes I can be. And that's what I need to start doing. In all honesty it's better for my health. Now that's all nice and easy to be said, but what can I do to actually make this possible? I can list many obvious ideas: yoga, meditation, positive thinking, staying organized, getting enough sleep, seeing friends and family, trying to keep the most normal life as possible...and I can go on...and on...and on...
But what I think is the real answer is on a more umbrella, bigger scale...
I can work hard, learn, live one day to the next, and just enjoy the journey.
Yep. We've all heard it before.


Enjoy the journey.


Every damn day. I had to add this with thought of one of my best friends Roseann.


Enjoy the journey, every damn day!!!


I enjoy the curiosity. The world really is interesting. It keeps me going.

hmmm...This is some free writing with no real direction established.

I wanted to take a lil' bit of a different direction for this entry. I wanted to do some unplanned free writing.


Currently I am at my hometown's library sitting on a public computer. The man next to me has to be 70 something years old. I am laughing on the inside because he is using a pretty ginormous font to type with on this computer. He probably thinks I'm creepy because I keep looking over at him. I look at him. I kind of want to freeze him for a few minutes so I can take a better look at him. Take a good look at all of the lines and wrinkles on his face. I'd like to sit him down and ask him some questions. Every elderly person I meet I'd like to sit them down and ask them some questions. The person doesn't have to be elderly for me to want to have a convo with them, but the elderly have always really peeked my interest.


Well for one thing not everybody gets to reach such a ripe age. Their genetics and lifestyle have allowed them to survive. Why? Why has this man survived? What has he survived? I don't know his medical history. Maybe he survived cancer :D Maybe he has an invisible autoimmune disease. I don't think so though, he's moving around very good for his age, he's computer savvy, and he seems to be still making himself a productive member of society. Whatever he was typing up wasn't for pleasure, it was for some sort of business. I wonder what kind of life this man has lived. Was it a very stressful one? What was his childhood like? Does he have children? He is not wearing a wedding ring. Has he endured a divorce? I wonder what he looked like when he was younger. Was he a pretty good looking man? What was his moral system? Is he religious? What is his favorite meal? Obviously there are endless and endless questions that I could ask this man. He's lived on this earth for a very long time thus far. He's experienced so much.


One of the most interesting parts of working at a nursing home is taking a look at the wrinkled, aged, lived person in that nursing home bed and then looking at their framed pictures of them younger. It's really something! It doesn't take me or anyone else to bring to anyone's attention that time is indeed fleeting! Our existence really is far more tenuous than we sometimes realize. We should enjoy it. We should take care of ourselves. And we really should take the time to reflect our lives from time to time and to make sure we're living it right. In my case I was forced to slow down and forced to really appreciate all of da small stuffs. It's benefited me greatly. And to be slowly getting it all back. WOW THAT'S SO AWESOME. My whole life is changed. My whole direction. Let's all hug now in lou of this sentimental blog moment. lol. Listening to The Flaming Lips/In the Morning of the Magicians has aided me in attempting to provide this sentimental blog moment. A special thanks to The Flaming Lips. :) <3

My Current Treatment

So what is my current treatment?? Now I am no doctor, so I am speaking from experience, from what I have learned from my doctor, and from what I have read. I will be adding sources to all of this.


Well I was diagnosed with Celiac Disease after being gene tested. I am a carrier of the gene.
Now this is important!!! I originally came out negative for Celiac Disease. When getting tested for Celiac Disease they will look at your gliadin levels. Some labs have cut offs for what level of gliadin they will test for. Some cut off at 20. My gliadin level is currently a 5. This is *actually* very low. But I am still sick. I am very sensitive to gluten. My doctor is very sensitive to gluten as well. When he is a 5, he is very, very sick. Some people are very, very healthy when they are a 5. So the gene testing is much, much more reliable. There are other forms of testing for Celiac Disease, but the gene testing although expensive is the most reliable. If you carry the gene, you carry the gene. :p


So naturally I would be treated with a gluten free diet. Unfortunately I have struggled with many, many different allergies. I was allergy tested, but I have found allergy testing to be somewhat unreliable. I'll get into that later. Some of what I am allergic to caused outward and obvious reactions (rash on entire body, numbness and tingling around lips or throat). Others were not causing such obvious reactions. So it is hard to tell what I am allergic to exactly. Allergies cause an immunological reaction. If my immune system is going to get better I need to cut out what is weakening it. For me it is pretty obviously allergies. For instance after I have an allergic reaction I am very, very tired. It just weakens my whole system. The best way that I have found to recover from an allergic reaction is to take a Clariton (gluten free- at least it is at the moment), stay up for a while to be sure that I do not react anymore (obviously if the reaction is serious enough- affecting the airway and breathing one should definitely go to the emergency room), and then just sleep and sleep. 

Because I do not know what I am allergic to exactly I have worked to simplify my diet. My doctor told me to  just eat beef and rice. I eat white rice because it is higher in Omega 3's (I will get into that later) and grass fed beef because my body type will not allow me to eat corn and soy fed beef for some reason. When I eat non-grass fed beef I find blood in my stool and become INCREDIBLY fatigued after about 10 mins after eating the beef. So I was pretty happy when I discovered that I can digest grass fed beef. I purchase it from a local farm in mass quantity. It is a bit pricier. I was drinking bottled water, but I was having stomach aches and problems with different bottled waters. I went to a celiac forum and discovered that other people were having problems with this. My guesss is possible cross contamination in the factory. I never would have figured this out, but when you are just eating rice, beef, and drinking water it makes it much easier to find the culprit. So I bought a safe, metal water bottle and only drink water from the faucet.

So I eat grass fed beef and white rice that is labeled gluten free. The label gluten free is integral. I was eating Minute Rice from a regular grocery store, but I was not getting better. There was a recent study that shows although a food may be inherently gluten free, if it is not labeled gluten free than there is  most likely cross contamination. I found this to very much be true. I also take supplements to compensate for all that I am missing from my diet. It is important to be monitored while taking supplements. You do not want to be overdosing on vitamins, that could be very, very bad. And I drink water only from my water bottle and the faucet water. I also use Dermassage dish washing liquid (as of now it is gluten free- there is a small chance of cross contamination apparently :/- I called the factory.) I use separate dishes from everyone else and keep them in a big plastic container to avoid cross contamination. Naturally I wash them with a separate rag as well. I also take an antibiotic for strept throat.

Every person is different, every celiac is different. As my doctor says, "Your body is smarter than I am." But in general eating beef and rice works for most people. The difference for me was that I NEED to eat the grass fed beef for some reason.

So yes, this means that I do not eat at any restaurants!!!
...yes, yes :p this does effect my social/dating life (believe me there will be a blog on this)...It also makes it nearly impossible to hide my illness. Which is not necessarily a bad thing. People care, they ask questions, they want to know. People feel "bad" eating in front of me. But honestly after a while eating out with other people (rather them eating and me hanging out) is really not a problem. You just get used to it, you don't crave the food any longer. I just hate that it makes others feel awkward. I mean a lot of society revolves around food. I really realize this now. But hey I definitely think good health is worth the sacrifice and that there are many other pleasures in life aside from food. And the rice and beef does not taste bad!

My Initial Diagnoses a.k.a. are you for realsies Doc??!!

Hmm…take these statements for instance.

“I have diabetes.”  

“I am a cancer survivor.”  

The first sentence is just three words. The second sentence is just five words, right? But it’s not hard to see that an entire novel could be written by each and every individual who can make such a statement.

“I have dermatomyocitis.”

So *actually* this is the short version…

“Oh wait I’m not even sure if the results of your muscle biopsy are in. Let me go see (some time passes, I don’t even make eye contact with my dad, I just kind of fiddle with my phone.) Yeah you have dermatomyocitis.” Hmm…I suppose this is a rather routine diagnoses for a rheumatologist. I wasn’t asked how I was feeling. I wasn’t asked much of anything.

I feel as though the doctor has already disconnected from the situation and from me. We had a fantastic repore my first visit. “You’re too young to be in this office. What are you doing here?!” He jokes. I respond, “I know! What’s up with this?” I laugh. We connect, a young guy himself. We began to disconnect when I insisted that my diet was making a difference in how I was feeling. “Davea, what you are eating is not affecting your immune system. Let me test your strength. You are still strong. I have patients sitting in my office who can’t even move their arms and legs.” Lets fast forward back to the response of me receiving my diagnoses,“I figured.”
This doctor, he’s a really nice guy. I then made him explain to me the anatomy behind the immune system.

At this point I honestly wasn’t surprised, I was more surprised my previous visit when he mentioned that I could possibly have dermatomyocitis, I had already obsessively researched it, matched up the peculiar nodules on my fingers with the pictures online, I was mostly mentally prepared for this diagnoses. I had already had my big break down, it was directly after my muscle biopsy surgery.  My poor father had to witness it. It was basically a lot of sobbing. A lot of the world spinning. A flooding of memories, hopes and of dreams that I would never get the opportunity to achieve. A lot of anger, “This world’s not fair and even if I somehow got better there would still be others suffering. There’s always someone suffering. This world isn’t fair, if it’s not me, it’s someone else. I have never been and I will never be satisfied with this world.”

This is a true statement. I still feel this way, I’ve always felt this way. Even as an elementary school kid. But I can cope with it. I’ve accepted it. I’m happy, but not happy with the unfairness. Nonetheless I still remain a relatively cheery person. I had read Michael J. Fox’s biography as an emotional comfort when all of this began. He states, “Pediatric cancer patients. They have to learn the meaning of no at a young age.” So yeah, I was prepared for the worst, and when you’re prepared for the worst you’re always prepared for the better. 

“The routine drugs for this diagnoses are methlotrexate (a chemo drug), and because this drug is teratogenic (can cross the plancenta) you will have to be put on birth control. Also corticosteroids (these drugs potentially have some pretty severe side effects). Also cancer is often associated with this diagnoses, we will have to do cancer screening on you.” I state, “I want to try out this gluten free diet and I want to be tested for allergies. I am going to wait on the drugs.” He just stares at me silently. I ask, “Have you ever had a patient do this before?” He flatly says, “No.” Our conversation was over and so were our routine visits. He would not send me to an allergy specialist. He wouldn’t send me to a GI specialist either.

After researching my new doctor I needed to get all of my old labs and patient visits printed off to bring to him, I read the patient notes from my rheumatologist. I read all of them from my first visit to my last visit. I am paraphrasing here, but it went something like, “This patient is a pleasure. Thank you for the opportunity to work with her.” He even put, “Patients states to be finding a gluten free diet effective.” To my last visit, “I spent an extensive period of time in the room with this patient explaining the anatomy behind her illness as requested.” Chapter closed. Next chapter. New doctor. Nice guy. Good lookin guy. haha. But he wouldn’t work with me. I wanted to search for a cure, not a temporary band-aid.

My Signs and Symptoms/Mostly invisible- If this is you, no you're not crazy!!

Ok so there were symptoms that I always took as normal that were not normal. I had these for years...Those all had to do with my stomach and the food that I ate. Diarrhea (ewww :p) especially after eating certain foods. Extreme fatigue after eating certain types of meals. I noticed it especially with pasta because I used to eat so much of it. Unfortunately none of thes alarmed me to go seek medical treatment. I did not pay good enough attention to my own body. Also I've always had allergies. I was already using a special shampoo, conditioner, soap, and soap detergant.

Now progressively working out started to become harder and harder. I remember trying to run, but my knees would swells up. I just took it as having bad knees. I also was more easily fatigued from working out. I just took that as getting older and being out of shape. One of the most noticable early symptoms was one day I walked with my friend Roseann a couple of miles, and after the walking my legs just ached and ached like crazy. I thought it was pretty weird. I also caught strep throat and could not get rid of it despite being given an antibiotic.

Early on I developed a rash on my forhead and on my chest. I also had some abdominal pain in my left lower quadrant. I went to the doctor for the pain and the rashes. I was given a steroid cream for the rashes. When that did not work I went to get a second opinion from another doctor. The rash had been getting worse and was now moving further down my face and around my eye lids. I was told that I had psoriasis, so they gave me a shampoo. Nizoral.

Then things became frightening and my symptoms became severe:
I woke up one day and my left arm was stuck at nearly a 90 degree angle DDDD: No matter how hard I tried I could not completely straighten it out (one of my only visible symptoms- at least my family could visually see this). I no longer felt like a crazy person. Something was seriously wrong.
My legs were so tight it was nearly impossible to put my socks on. So I stopped wearing then.
Half of my back went numb.
I had muscle spasms randomly throughout my entire body.
I developed carpal tunnel in both of my hands so severe that I had to use two hands to open my car door.
Tight arms and legs all of the time as though I just worked out.
Muscle weakness from physical activity.
My muscles would randomly burn.
My arms, legs, and neck became heavy and hard to lift.
I was extremely fatigued no matter how much I slept. I began sleeping 15 hours a day. 
I began falling often and had a hard time walking up stairs.
My abdominal pain became severe and left me bedridden for a few days.
My inner knees had a numbness and tingling feeling in them.
Red nodules formed on my fingers.
I then began not digesting my food properly. Food I ate would sit in my stomach undigested. I would wake up with a full tummy.
My stomach and intestinal areas on my back would burn.
Right upper quadrant (where my liver is) would burn.
...Then the extreme weight loss began. I lost 22 pounds, which was a lot for me. I went from 130 to 108. I went from a size 7 to a size 2.
I then started to become hypoglycemic. I would take my blood sugar with my grandmothers tester. I was usually around 70. This left me feeling out of it all of the time.
I had a cold like symptoms including a fever, sore throat, and chills.

My current symptoms and I am on no medicine aside from a long term antibiotic for the strept throat:
Muscle tightness and weakness from physical activity.
Muscles generally always feel sore in inner arms and legs.
Digestion is sluggish.
Red nodules on hand.

What's the big deal?? Autoimmune disease plus gluten free diet.

Who?? Me! Davea :DD I'm a 24 year old nursing student (I graduate in two semesters- woot- 'bout time)


What?? I was diagnosed with a pretty scary autoimmune disease- Dermatomyocitis (Dermaomyo what?? I thought the same thing :P) It's when one's own body starts to attack its' own muscles, which causes them to slowly degenerate (yikes! don't worry, this blog is not meant to be super depressing or anything!). This disease also causes redness of the skin. Thennn with a lot of work (you wouldn't think it would take that much work D:) and many months later I was diagnosed with Celiac Disease (Thank you Dr. Auckerman- a Celiac himself. This diagnoses is controversial because unfortunately CD is hard to diagnose.) Hmmmm...and this is when things get interesting- at least from a medical perspective.


When?? These shenanigans have been going on for about a year now (when my symptoms started to really show, although I think I showed subtle symptoms for years that I took as normal). But things started to get scary starting July of 2010. But I wasn't diagnosed with Dermatomyocitis until the beginning of February of 2011 and I also was not diagnosed with Celiac Disease until mid March of 2011.


Where?? O-H-I-O :)) Yep. I'm from Ohio, from near the Cleveland/Akron area.


Why?? Good questioooon!!! Why the heck did my body start to go super crazy all of the sudden?? That would be the main point of this blog.
And also I've learned too much during these escapades to not share. I want to encourage people to fight for their health, to not lose hope, and to form a partnership with their doctor. I also think it's important to have someone else to who can understand to talk with and to support one with their health. I would love to talk to anybody about their health. Even those who have a different diagnoses than I. The information in this blog, especially the information concerning autoimmune disorders has been giving me my life back, and it would be morally wrong for me not to share this vital information. I'm living proof that at least for me thus far I am heading toward remission. Just look at my labs (I will be sharing them :))


And last but not least. WHAT'S THE BIG DEAL?? I am currently not on corticosteroids. I am not telling anybody with an autoimmune disease to stop taking their corticosteroids, but I am not a fan of those drugs because they do not treat the underlying cause of the disease. They just treat the symptoms. And they can have such awful and scary side effects. Although I suppose it's a double edge sword because they have thrown people's disease into remission. But generally the longer one is on them, the more the dose has to be raised, and the worse the side effects are. Plus generally you do not reach long term remission with them. And I am living proof that thus far without the corticosteroids plus the proper diet and supplements that my symptoms have improved tremendously and I have the lab tests to prove it. I see no reason that I should not get full remission. My doctor specializes in nutrigenics. Gene testing and then placing a patient on a diet according to their genes. Yes the diet is tough to follow, but thus far it was been completely worth it. I am also on a long term antibiotic to fight the strept throat that my weakened immune system could not fight off.


...Aside from Celiac Disease being a possible underlying cause of autoimmune disorders, there is another form of treatment that has caught my eye. That is Dr. Brown's antibiotic therapy. That form of treatment is also being incorporated into my healing process. But I'll be getting into that later. I have read about some getting remission just on the antibiotic therapy, some with just a gluten free diet, and others with a combination of both.