School year 2013-2014

After a great summer of swimming laps almost daily, my dermatomyositis is still in remission, and I am continuing to do well. Once school started, exercising regularly went by the wayside, as usual, and I found that I was losing track of the weeks between B12 injections until I felt tingling in my hands and feet! I really need to stay on top of that. My big accomplishments - I went water skiing this summer for the first time since dermatomyositis! I tried to knee board, but I just didn't have the upper body strength back for that. This past weekend I went snow skiing for a whole day! Also a huge accomplishment! I didn't fall a single time, and I kept up with my skiing buddies. By lunch time, I felt like my right leg was dragging along a bit, and after breaking for lunch, I felt as though I definitely favored that leg, but I made it! I took two days to recover so I could return to work today and not be too tired. On the down side, I have received a lovely reminder of what being on a high dose of methatrexate can do. With my weakened immune system, it was confirmed today that I have a case of shingles! I am like an old person (no offense to older persons). I was told that this can be a recurring thing, and that the medication may or may not help. Given that my body responds well to medicine, let's hope it does help. I am thankful the shingles are on my stomach and not my face, although my hopes for a bikini modelling career may be over... In 6 months, my doctor may consider giving me the vaccine they advertise on TV. You know, the one for people over 60? I try not to think about what can happen on "meth", but as my husband said, this makes you think, "What's gonna happen next?" Clearly, we will just have to focus on my future Olympic skiing career...

School year 2012-2013

With the relaxing summer over, I was ready to start the new school year with renewed energy! Or so I thought... It is always hard to restart each school year. No one is in "teaching form" and our voices are not used to talking all day, but man, was I exhausted! I found that I could not wear shoes that had any kind of heel on them. When I did, my legs were sore for the rest of the week. So, I ended up wearing sneakers more frequently. At the beginning of December, I told my doctor that I was planning on exercising over Christmas break when I would have time. I was just still to worn out by the end of the day. I was true to my word, and I began exercising. By the end of the third quarter, I had worked my way up to 4-5 times a week! I was feeling great! My doctor decided to drop the dose of methatrexate down to 6 pills instead of 8. I definitely started to feel less than great. I became more tired, my oy legs and hips - oh my hips - were more sore. I couldn't motivate myself to exercise but knew if I could, I would probably be less sore... I thought perhaps there was an adjustment period, kind of like when I was stepping down off the steroids. I thought I really needed high school spring break. Still, after weeks and after break. I was still feeling... Bleh. My strength was good. My B-12 injections were doing their thing. My thyroid was good. So, this week, we decided to step up the methatrexate back to 8 pills. We'll see how that goes. This school year, I only took one day off for needed rest/recuperation! I hope the readjusted dosage gets me back to how I was feeling third quarter!

Spring/Summer 2012

At this time, my doctor was giving me glowing reports on my strength and the appearance, or lack thereof, of my rash. On paper, I was doing remarkably well! However, I was still taking off every Wednesday, and I was frustrated that I wasn't really feeling well enough to resume normal activities. My doctor reminded me that it took me awhile for me to get as sick as I was, and it was going to take just as long to rebuild my muscles. I was feeling that my case of dermatomyositis must not have been that bad, after all I could breathe and eat by myself - stories online had scared me into thinking that assistance in those categories was the norm. I asked the doctor how bad off I was. Apparently it was bad. He thought it was crazy that I never stopped working. He never told me to stop! He said he wouldn't tell someone to stop because then they might fear the worst about their situation. I could see his point. With hindsight being 20/20, I totally should have taken major time off! When I complained about being so tired still, he checked my blood work for some additional things (my blood is checked at every appointment) and he found out that my B12 was extremely low! This coincided with the end of the school year. After my first injection of B12, I felt better within the hour! It was amazing! I spent the summer up north and was able to swim almost everyday, although it wore me out pretty good - I found that I was rather cranky afterwards until I had sufficient time (about an hour) to recuperate. The combination of B12 and being on summer break worked wonders for me!

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.

Summer 2011

That summer began with me co-directing VBS. I remember that I was complaining that whole week about my ears itching like mad and how crazy I must have looked walking around church scratching my ears! The following week, my husband was in Haiti and in addition to shuttling the kids to swim lessons, I was also in charge of mowing my sister's lawn while she was out of town. After the lawn mowing, I noticed red spots on my knuckles and in the corners of my eyes - I assumed it was poison ivy because it was itchy. Meanwhile, everyone I saw seemed to think the week alone with the three kids was too much for me to handle. The redness around my eyes had me looking like I hadn't slept in days. Our next adventure was heading north for a month to hang out with my parents at the lake. The two older kids were both learning how to ride their bikes and I was having a hard time trying to help them stay up and run along side them. Add that to pushing them on the swings and swimming... my arms were killing me! I assumed that I must really be out of shape! My sister and I decided that we would *really* swim and did so daily with a course we'd mapped out at the lake. I was having a hard time keeping up with her, but she was in better shape than I so... My rash wasn't going away, and I no longer felt it was poison ivy. My cuticles started looking as though they were infected. At this time, though, I still didn't think anything was wrong. I had excuses for any ailment. When we returned home from our month away, I remember saying to my husband about how hard it was to get up off the couch and that perhaps my body was rebelling against the no-more-daily-swimming. He shook his head an said I must be really lazy! :) We then traveled to see his parents for the weekend. At that time, I had been out of the sun for over a week, but I noticed at their house that my chest and face looked sunburn. I was now beginning to think there was something to this rash... But school was starting the following week and the beginning of the year is so hectic, so of course I didn't schedule an appointment right away. I finally decided to schedule at the very end of the month because our co-pay was about to go up! I was also now noticing that getting up out of a chair was increasingly difficult and stairs were a challenge and was pretty anxious to get to the doctor.