The Devil Inside

A few years ago (well, it’s been about 3.5 years now) after several months of excruciating pain and vision loss, lots of ER and doctor’s visits and lots of pain meds, I was diagnosed with an auto-immune disease called Scleritis. Here is a basic definition:

Scleritis is an inflammation of the white part of the eye (sclera). It may cause sight-threatening complications and affects females more commonly than males in the fourth to sixth decades of life. It has a tendency to recur. It is characterized by pain, which can be severe, redness, tearing, and inflammation or surrounding tissues. Scleritis is often associated with a systemic disease (e.g. rheumatoid arthritis, Wegener's granulomatosis). Treatment includes topical and systemic steroids and immunosuppressive drugs for very severe cases.

I have subsequently been tested for underlying systemic diseases, but have not found one. I have been lucky enough to have been referred to the leading Seattle specialist in this field and for the first while was able to get the flares under control pretty well, although I have been on predisone for over 2 years and the highest dose of an immunosuppressant for 1.5 years.

Prednisone is a miracle drug and a devil drug at the same time. It takes away inflammation like a dream, but causes horrible side-effects. The worse side-effects for me are weight gain and puffiness, major emotional disturbance, muscle weakness and joint pain, jitters and insomnia. Those things combined lead to major bouts of depression and anxiety. The biggest problem is that my very low daily dose of 5mg stopped working so I had to go to 10, which evened out after a bit and was somewhat doable. Now the 10 is not working and I am on a course of 20, hopefully only for a few days, then taper back down. The immunosuppressants must have side-effects, too, but it’s hard to know because the pred masks everything.  My blood work every 6 weeks has looked good so far, thank goodness.

I’ve gained back all the weight I lost in the contest. I’m so ashamed and sad about this it is hard to write, but I need to just get it out there. I couldn’t even do the contest now if I wanted to. We are moving into our new house in two weeks and it’s hard to even be happy or excited when I feel this low. I hope to be able to write a fun and positive post about that soon.

My doctor wants to get me off the prednisone so the next step is to try a different class of drug called biologics. It has to be injected, which is freaking me out and is very expensive which hopefully is covered by my insurance. I am not sure of the side-effects yet, although I have read about some good and some bad reactions. I guess I need to get over my fears.

I am not writing this for sympathy. I just really needed to write it all out. And maybe to explain that if I don’t seem like myself it is because I am not the Tracy I was before. I told my sister-in-law a few weeks ago that prednisone has changed my personality. I am not me anymore and it is a scary and hopeless feeling to be out of control like this. I hope my family will stick it out with me because I can’t always play nice at home like I can in public.

Now I just need to learn to inject myself with needles! Yikes.