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!!