Dermatomyositis Update March 2015

So it's 2015, and I am still managing the dermatomyositis without oral medication. The last time I visited my dermatologist, she wouldn't put me back on the prednisone because I had never lost the weight that I gained from the prednisone previously. So, the idea that weight gained when you are on prednisone goes away when you get off of it is not always true. I never lost the weight.

Additionally, I had been depressing my immune system by eating sugar - on purpose - because it stopped the itching.

My dermatologist gave me 3 different topical medications: one for my neck and upper back, one for my head and scalp, and one for my hands and arms. I use the topical medications when the outbreaks are itchy and red and irritated. I use an antihistamine when the itching is out of control. It stops the itching, and she said I could continue to do that.

She also sent my to my general practitioner for consult and blood work. I had become pre-diabetic, pre-high blood pressure, and pre-high cholesterol. Basically, I was a mess and definitely over weight. I had gained 55 pounds in this process, and not able to get the weight off. I recognized the symptoms of being pre-diabetic. I was thirsty all the time and felt like I had to go to the bathroom - urinate - all the time. My skin was dry and flaky around my mouth, and my hands were horribly dry.

I cut all the sugar out completely and immediately. I'm not trying to kill myself just to manage dermatomyositis. I want my health in tact. I have a long bucket list, and my children are starting to have children of their own. I would like to be around to enjoy my family and my partner. I am motivated to change my situation is my point. If you are in a similar situation, you have to find your motivation. I personally want a high quality of living if I am going to be on this planet.

So I cut out sugar and started watching my carbs. I also made more of an effort to go to the gym to at least exercise on the treadmill, bike or in the pool. I started riding my bike. That is what my rheumatologist had told me would help. Keep moving, keep the lymph and muscles flushed out so I don't accumulate the bad stuff that causes the break down in the muscles and joints. I really had slowed down on the exercise.

In January my partner bought me a Vivofit. That has been amazing because I can track my calories - something I have NEVER DONE. I had no idea how much excess healthy food I was eating. Did you know an avocado is 350 calories!?!!! OMG I came to understand that I was eating healthy for like 2-3 people!! So calories and portion size reduced immediately. With the Vivofit, you can track your calories and daily activity. It reminds you to move when you have been sitting for too long, which improves your metabolism. Awesome!! I had lost about 10 pounds before I got it, and now I've lost another 10 pounds with it!! I also like that it helps me be aware of my movement by tracking how many steps I take in a day. If I hit my quota, I'm on the path to weight loss. If not, I know I will stagnate.

More than anything, I am simply more aware of my calories and my exercise. It's amazing. I really never had to do that before, so I was not aware. If you are in a similar place in your struggle with dermatomyositis, or even with weight loss, consider getting a device that allows you to track your food and exercise. However, I do NOT recommend this if you have a history of food disorders. My partner does, and she quit tracking her calories as soon as she was clear on food portions that worked because the idea of tracking was sending her back into food disorder mode. If you are under the care of a physician or counselor for a food disorder, you need to work with them before taking on using a tracker. IT'S REALLY IMPORTANT YOU DO NOT TRIGGER YOUR FOOD DISORDER :)

Be healthy ya'll!! Til next time!

2012 Update - Dermatomyocitis

So what is this "itis?" It's a cousin to Lupus and not very well understood. Very little research has been done on it, so little is known about what triggers it to start or what causes it to stop. There is therefore no known cure. What does it do? It is an autoimmune disorder that attacks the body’s skin and muscles, and I was diagnosed with it in March of 2010.

Symptoms

I had this crazy rash thing on my neck and chest that itched, a patch on each hip and my cuticles were red with blood spots on them, so I finally went to a dermatologist. I walked into my first visit and my doctor looked at me and said, "You have dermatomyositis." She looked at all my rashes and indicated that I had all the classic symptoms including the papules that were forming on my knuckles on my right hand. Then to my surprise, she also stated that it was associated with cancer in 40-60% of all cases, so that meant a thorough cancer screening for me.

Coping

So how does Miss Healthy cope with all of a sudden being diagnosed with a rare autoimmune disorder? She reflects, studies and takes medication for the first time in her life. Yes, I was put on prednisone to stop the symptoms from getting worse. And yes, I tried everything I knew to eliminate the symptoms. My last post in January of 2010, I was dealing with the symptoms - which I did not understand. The rash on the back of my neck and chest was like a sunburn that never went away. It bubbled up, and stayed bubbled up. I was eating healthy, on antioxidants - maybe too many. I may never know.

Tocopherols

What I do know is that I was under an extreme amount of stress. I kept hearing in my inner mind that the problem had to do with tocopherols. I actually did not know what those were at the time and had to research. Tocopherols are a form of Vitamin E. As it turns out, most of what I was taking as my healthy supplements had excessive Vitamin E or tocopherols, a vitamin which you SHOULD NOT take too much of. I may have over done it, yes, I may have over done it. Booooo. Remember the old saying, "Everything in moderation..."  Well, even healthy apparently can be toooo healthy.

Medication

Dermatomyositis is unpredictable. The medication regimen is to start with high dosages of prednisone and gradually reduce it to a place that was manageable. I have spent the last 2 1/2 years going up and down on prednisone levels trying to find what works, or make it last if I was between doctor visits and without insurance. I was also on Plaquenil, often used to treat malaria or Lupus. The side effects are a loss of color vision after about 10 years. That literally made me cry. I would rather go to the dentist than to go to the ophthalmologist with that knowledge. After my last dose of that, when my skin seemed to be under control, I didn't get a refill.

Side Effects

Prednisone is actually produced in small amounts by the body, so I decided to regulate with that. (Who is the doctor? lol) I was also supposed to take high dosages of calcium and Vitamin D. Prednisone reduces calcium in the body and can lead to osteoporosis. I did take both of those supplements. The problem I kept encountering was upset stomach, indigestion, diarrhea - all of which I was told I might have. However, I didn't want more medications to alleviate those problems too. So every now and then, I would just stop taking everything when my stomach was a mess. I encountered what is known as the prednisone "crash." Prednisone, as a steroid, replaces your adrenaline. When your adrenaline is reduced, and you have no prednisone to keep you working, you "crash" or run out of energy. I would literally end up sleeping on and off for days. Or, I would hype myself up on caffeine and sugar until my body regulated.

Weight Gain

The other side effect of prednisone is weight gain. I was told this is normal, but if you get off the prednisone, then the weight comes of pretty quickly. Well, not yet it hasn't. I actually tried to use the prednisone to my advantage. Because my dosages were so high at various times, and I was so full of energy, I went to the gym. My body type generally bulks up any time I work out, and with the prednisone, I bulked out A LOT. So, I am not anticipating the typical weight loss. I was always self conscious as a kid about my body - who isn’t? And bulking out was not very feminine, so I avoided it by running and not weight lifting, etc... Not an issue for me anymore. I have learned to be comfortable with my body type and know that my health is more important than my pant size.

What am I doing now?

What am I doing now? I’m out of medication, I have no insurance – like many Americans, but my condition is relatively stable. I don’t have the horrible rash and itching – it’s slight right now. However, my feet and legs are stiff and sore after every work out – more than they used to be – and my metabolism is sluggish. I have symptoms of somebody not on a healthy diet and full of candida, which is a typical side effect of long term use of steroids like prednisone: fatigue, weight gain, muscle and joint soreness.

Balance my pH

My biggest concern is my joints. I am doing a 7-21 day detox to try to eliminate toxins that would cause joint soreness. My studies have shown me that arthritis and arthritis like symptoms are  indicative of an acidic pH, which leaches calcium out of bones and can cause osteoporosis. An acidic pH can be caused by too much acidic food like canned or bottled fruit juices, or too little basic foods like green vegetables. For me, I am reducing my intake of fruits and fruit juices – except for green apples I am juicing to help my gall bladder – and increasing my green veggies by juicing and making vegetable soups. I have also eliminated dairy and wheat for this period of time because they tend to cause the most issues and inhibit a good detox. This is not a pure detox because I am not eliminating solid foods entirely, eggs for protein, or fish. I believe my body is still a little too sensitive to go cold turkey to a full detox, and I do not want to inflame the dermatomyositis and start over.

Reduce Stress

The difference for me is that my stress levels are greatly reduced right now. I believe that stress played a huge role in this illness. I have times in my life where I have been under tremendous stress, but nothing compared to this. Studies have shown that stress is one of the major causes of severe illness. I certainly am a believer!! The other thing I do to relieve stress is go to the gym. My gym has a sauna, whirl pool, and swimming pool. My after work routine for a while was to go to the gym and cross train: swim, bike and run. Sitting in the sauna helps to relax, heal, and detox the body, and the whirl pool helps relieve muscle soreness after a good workout. I also have an excellent massage therapist who helps keep my stress levels in check.

Know my self

The most important thing for me during this period has been to spend time focusing on myself mentally, emotionally, and spiritually. A healthy person reflects on life as they live it, is flexible and changes as needed sometimes to adapt to a change in environment. As we get to know ourselves a little better, sometimes we just change because it is better for us – an improvement. Our core values may stay the same, but our perspective may change based on new knowledge or experience. My core values are the same, but my perspective and how I think about things has definitely changed. Perhaps that is why my stress levels are lower, my health is improving, and I am finally able to write again.