Wednesday, October 5, 2011


As in, a birthday.

In general, this birthday is not the happiest. Prednisone is wreaking havoc on my mental state. I am feeling very shaky emotionally, and it has been unpleasant. I have been suprised to feel on the verge of tears quite often in the recent months. Sometimes it's flashes of anger about one issue or another, and other times it will be extended periods of worry or pangs of loneliness. As much as I hate being medicated, I realize that there are resources that can help me, and that it's very common and not at all stigmatized for someone in my situation to ask for extra help staying emotionally balanced. Maybe it's time. I mused about this in my last post. I feel dark inside, and I'm afraid that it is being reflected in my external personality as well.

I was lamenting that I wasn't happy about this birthday, and a friend suggested setting some goals. I agree. I have had some big accomplishments in the last few years, and while working through the challenge of each one gave me happiness, I wouldn't say that I am overall more happy because of them. In fact, there are some things that I am quite unhappy about at the present time. I have some soul-searching and self-organizing to do. In the midst of difficulty lies opportunity. When the going gets tough... well, you know. It's a new year.

As for the health specifics, I have been on on too much Prednisone for my own good. The Methotrexate seems to have lost some effectievness. The heavy prednisone is to keep the dam from breaking, so to speak. I switched to Leflunomide (Arava) last week and am scared. I feel like Columbus sailing off the edge of the earth. Just stop taking Methotrexate, just like that? What will happen? When will the demons come back? Where did that leg pain come from? Why am I even training for a marathon? What's the point? Should I register for that February race, or just give it up now and save myself the trouble?

I am also looking at a couple of different myositis-specializing clinics around the country. I've thought about this at various times since I first got sick, but since things had been going so well for so long, it hadn't really been at the forefront of my priorities. But it's time to get some advanced second opinions, and get into somebody's system that can help me better than the local one-man rheumatology clinic (which I have no complaints with, but I respect that they have limited experience with a very rare and complicated disease). All I know is that when your meds stop working, all hell seems to break loose. I don't know where it's worse... in my mind or in my body.

But the good news: Although it's steroid-induced, I'm up and moving. Today I ran, and tomorrow, God-willing, I'll run some more. It's really the only way I know how to keep moving forward...


  1. I know that feeling, sometimes I get to school, and just sit there, can't even pay attention to the prof, cause of the predisone. Sometimes its like your unsure if you can wait that long to get better. Im glad i found this blog, finally someone that knows what im going through.

  2. Hi There!
    I've had Polymyositis for 5 years and am currently taking Imuran and Methotrexate. Have you tried Rituxan? It knocked my CPK way down.
    I'm 25 and my first marathon is 16 days away. Good luck on your race and I say sign up for that Feb race ;) (the peanut butter flavored Gu will be out by could anyone NOT want to try that out?!)

  3. Sorry to hear the meds are being nasty to you right now and hope you are feeling better and getting to do more of what you love. I am so jealous that you can run! (tendons in both hips almost torn through here in this body but mind and spirit aok)

  4. Hello, I am a (previously) competitive runner and triathlete and diagnosed with an autoimmune liver disease about a year ago. Sometimes I get so discouraged. I was googling "running with autoimmune disease" to look for some inspiration. It's nice to know that I am not alone! Thanks so much!

  5. Have you tried a plant based organic diet?