Waiting...

So, at the beginning of treatment, I was on steroids, methatrexate, and hydroxychloroquine. The last two listed take 3-4 months to build up and have an effect on your system, so the steroids were to help me get through those 3-4 months. Through this period, I was working 4 days a week. Thankfully, my principal was very understanding and I also had a set of subs that were willing to help me out weekly. Taking Wednesdays off was perfect - I worked myself ragged Mon/Tues, recouperated Weds on the couch while I did school work, worked myself ragged again Thur/Fri and spent the entire Saturday on the couch. I was teaching a course for the first time last year. My sister, who teaches the same subject I do, would come over on the weekends and read the textbook to me and quiz me - I was too weak to hold the book while lying down. I questioned whether I should still work. I still felt like I had to "use it or lose it" with my muscles. Was I hurting the kids by being absent so much? Perhaps, but the alternative at this point in the year would be to get a sub (untrained to teach the courses I was teaching) for at least the rest of the semester, if not for the whole year. The principal agreed that having me there for 4 days a week was better than the alternative. The kids ended up doing great on their exams, so in the end I think they were OK! After my mom left, my co-workers took over with providing meals for my family. That was such a huge help! The steroids made me HUNGRY! This was over the holidays, too. I could not fill up. Needless to say, I gained some weight. At about month 3 or so, my face was hurting from swelling from the steroids, but they were a necessary evil. I was so happy when I was put on steroids because I could walk better and last longer through the day, but I was even more happy at the end of the steroid treatment!

Fall 2011 - Diagnosis!

While I waited for my appointment with the Rheumatologist/Immunologist I was getting worse. The day I woke up not feeling refreshed, I called my mom and asked her to come south (she had been offering and I had said we were OK, however I realized now that I was no longer OK). Ultimately, she stayed with us for 5 weeks. I was now having trouble washing my hair, putting dishes away, and I could certainly not carry my 1 year old for any distance. There were a couple of times I nearly dropped him. Mom came with me to the doctor. He listened to my symptoms and briefly looked me over and said, "Well, I know what you have - it's something called Dermatomyositis." I said, "I know. I have read all about it." Now fix it! I had read that a doctor who is experienced with this will know just by looking at you. I had an experienced doctor! Yes! He ran a ton of tests and said that I had to go get a bunch of cancer screening done. I could not start a steroid treatment until these tests were done. By the time I got an appointment (2 weeks later - of course) I was now having trouble writing, typing, keeping my head up for the whole day... I was still teaching, but doing so sitting down. I was putting my head down on my desk between classes, during lunch, and during planning. My students (high school) were awesome. I feared that if I stopped working, and hence stopped using my muscles, they would disappear even faster. I would come straight home after work and lay down on the couch. My husband would lift me up to get me to the dinner table, and then I would return to the couch. My muscles were exhausted. Once the tests were all run and I was cancer-free (usually it is only older patients who seem to have cancer along with the dermatomyositis), I got to start the steroid treatment. I felt better immediately. Not amazingly better, but better. I was torn between being upset that I had this rare disorder and feeling blessed that I live in an area with a ton of specialists and got a diagnosis rather quickly compared to some of the stories I had read on-line.

Fall 2011 - In Pursuit of a Diagnosis

That end of summer/ early fall, I had my first appointment. At this point, I had made a list of anything that could possibly be a "symptom" and when I first noticed it. I gave it to the doctor, and he said, "This is only a 15-minute appointment. I can't help you. You need to reschedule for a physical. There seems to be something systemic going on." He prescribed me a steroid for the rash - a six day supply. The steroid made me feel so much better. The soreness was gone for the first 2-3 days! There had to be something wrong because the steroids helped. In discussing all of this with my family and friends, the "auto-immune" word popped up frequently. While I waited for 2 weeks to see my doctor with a physical appointment, I turned to the internet. I searched "auto-immune disorders" and found a list. About the fourth one down was Dermatomyositis. I selected it because of the prefix since I had a rash. At this time, I was red all over my face and chest (in a V shape on my chest). In reading the description, it seemed to fit me to a T. The more I looked into it, the more I was convinced this is what I had, and the more scared I got. People's accounts of it are not comforting!! I printed out some info and took it with me to my physical. I had not been to see my general practitioner in 4 years, so it was time for a physical anyway. After 45 minutes of the routine stuff, I finally got the courage to tell my doctor that I really had not been feeling well and told him about how my muscles were hurting and how hard it was to get up. He said, "Let me guess, you think you have some sort of muscular disorder." Yes, yes I did think that. He patted me on the shoulder and said, "I think you are jumping the gun a bit here. This is very rare. I have only had two patients in my whole career have this. You don't have this. I will run some extra tests, but you don't have this. You need diet and exercise." Hello?!?!? What was swimming daily for 5 weeks? He did get me a referral to a dermatologist for the rash. My appointment was in 2 weeks. My husband was mad I didn't get more steroids. During this two-week wait, I was starting to feel worse daily. My arms and legs hurt. I went to the dermatologist who asked me what was going on. He looked at my knuckles under his hand-held microscope and then asked me if I was feeling OK. I started crying because I was indeed not feeling OK and because it sounded like he knew something was wrong, so I was feeling some relief, too. The horror stories I had read on-line had me thinking that I may never get diagnosed. He took a skin biopsy but told me that his initial thought was either Lupus or something called Dermatomyositis. I then told him about my last doctor's appointment and how that went. I wept for about 15 minutes. Relief and sadness about the journey I was embarking on. My husband was again mad that there were no meds given to me. Meds would distort any test results. The biopsy came back positive for an auto-immune disorder. I was referred to a Rheumatologist/Immunologist. The guy had great credential but his office voicemail system was messed up and I couldn't get in touch with this office. Meanwhile, the days were ticking by. I got an appointment with a different rheumatologist (for a day two weeks away), but he was older and had to be close to retirement, so I wasn't sure I wanted to start this journey with him. Thankfully, the first guy's office finally called me - they had had a cancellation and I could get in next week! Again, I was getting worse daily and was scared about how quickly I was going downhill.