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!