Yesterday was a not so bad day, like really not bad day, like verging on a good day! I was able to get more walking in, increasing from right after the surgery barely making it once around the building to yesterday getting up to 1.5 miles! Not all at once, it was broken up in little walks and steps around the house as well, and very slow, but still it all has felt good.
I've begun to realize that a pretty decent day is followed usually by a few steps back, and that's okay. I know that sounds negative but for me it is the beginning of acceptance of this disease. I don't mean I'm not fighting and won't keep fighting, heck no! I fully believe, however, that in order to fight I do have to learn to accept what this disease is and what this disease (diseases?) is doing to my body.
When I woke up this morning and got out of bed I felt incredible, I had that "normal" feeling, I walked NORMAL. I said to myself, maybe this is "spontaneous curedom!" In my behind the scenes reality mind I was saying "uh oh...prepare yourself...cherish these moments...." About a half hour later I started to prep my avocado and yea, there was that extra pain in the left hand and the burning that comes along with the tingling, on bad days, in my right hand and wrist. Then the knees started to stiffen. I've done a LOT around the house today, pushed myself; not to be dramatic but because if a downslide is coming as it feels like it is, I want to cram in as much as I can! (also my worrying loving 17yo daughter is out for the day, when I try to get actual cleaning done when she's home she fusses at her mama lol ) I'm hurting pretty good now, my body has finally said "yea NOPE, you're done," and I'm listening. As of right now I'm not upset. Maybe I'm a little frustrated but not terribly frustrated like I do get sometimes. I'm evolving, can you believe it??
PS 18 days until treatment begins!
Saturday, August 27, 2016
Tuesday, August 2, 2016
It's been one week since my biopsy was done. Everything went very smoothly for the biopsy; the nurses, techs, and doctors were all terrific and kind which allowed me to feel less stressed which then I'm sure made for a better surgery. I woke up still in the operating room and truly had no idea anything had happened and gave the anesthesiologist a little chuckle when I asked if they did anything yet!
I was taken to recovery stage 1 to fully awaken. The nurses mentioned they would be giving me juice and crackers to eat before giving me pain meds which was a problem as I have celiac disease lol. They asked what I can eat and the things I thought of at first (fruit, veggies...trying to sound like a healthy celiac/vegetarian haha) they didn't have access to in the surgical unit, so then I said, "well, a lot of potato chips are gluten free, would that work?" They laughed but thought that was a good idea to substitute and went on a quick hunt to find them but couldn't; they called my poor daughter in the waiting area, who later told me she nearly fainted when, rather than having a nurse come get her to bring her to see me as the said would happen, she got phone call about her mother and was terrified it was bad news; only to hear the nurse on the other end say, "soooo, your mom wants potato chips....." Hilarious to say the least, especially because she didn't tell her the gluten complication reason and it sounded pretty typical of her mother (who is her father's daughter lol). She snuck in through some open doors before my nurse had a chance to go out and find her!
My pain stayed manageable I'm sure because I stayed a good patient and stuck to my pain medication schedule. Okay, I tried to be a good little patient for my M and only got up when I needed to go to the bathroom. Is it my fault there were things to do/pick up along the way or that the kitchen was on the way to/from our bathroom? Nope. I found it a bit annoying that by day 3 when she would ask "why are you up" and I'd reply, "going to the bathroom" she didn't believe me and would follow me! How rude!!
Early Thursday (post-op day 3) I noticed my knuckles turning red and beginning to itch, along with redness around my elbows and itching and pain. The pain and swelling of joints, especially my knees, progressed through the day and I was terribly stiff and found it hard to walk by late in the day. Recognizing this as a flare (a flare, at least in autoimmune diseases, is when the immune system is triggered whether by illness, surgery, procedures, stress, etc; the typical immune system goes to fight off whatever invader has come into the body, in the body of someone with autoimmune disease, the immune system goes haywire and fights off things mistaken for invaders, in the case of my disease my immune system starts to attack my joints and muscles) of my disease, I called and left voicemail for my rhuematologist. I got a call back on Friday for a big bump in prednisone with a 12 day taper; I'd bump up to 50 for 2 days, then taper back by 5mg every 2 days until back to 20mg, my current maintenance dosage. I'm now on Day 4 of my taper and am seeing improvements: my hand and wrist swelling has gone down and I can actually touch my fingertips to my palms again! Not quite a fist yet but getting there :) The biggest improvement has been the mobility I've gotten back with my knees, it's pretty amazing, I actually kneeled onto my right knee yesterday morning without thinking about it and had no pain. Getting up was incredibly tricky as I've lost a lot of muscle strength in my thighs thanks to Dermatomyositis, but still! I'm trying to stay in the moments of improvements and not get stuck in questioning if this is all temporary until I'm back down to the 20mg dosage. One new rapidly increasing dermatomyositis (DM) symptom has been the "mechanics hands" phenomenon. The skin on the sides and tips of all my fingers is incredibly dry, with it being especially dry and hardened and tightened on the sides of my index finger. I have small cuts on the sides of each of my thumb nails, and a lot of dryness around all sides of fingernails with redness just below the nail beds. One fingernail seems to be separating from the nail bed as well, gross I know; I smother my hands with coconut oil now at least 3 times a day which seems to at least control the dryness a bit. I'm hoping the prednisone taper slows this process down as well so I don't lose any fingernails :(
Back to the biopsy. I was incredibly disappointed to find out that it will take 3-4 weeks to get the results back! That is entirely too much time to spend pondering, wondering, guessing what the results will be. Too much time to think, "what if it isn't DM, what if it is something completely different", and a billion other thoughts that I'm working very hard to quiet. I was never given a straight answer, prior to surgery, as to when I'd get the results. I had assumed about a week and no one said anything directly to contradict that assumption so I never pushed for details...live and learn, yes? It's okay though because the battle for treatment approval has begun with my insurance company. Not unexpectedly, they denied the request from my rheumatologist for approval to treat with rituxin (a chemotherapy drug used as an immunosuppressant) in 2, 6 hour infusion treatments. Rituxin is still considered a higher tier drug that should only be used after showing failure with several (several!!) other drug protocols first. Most, if not all, of the recommended first tier drug therapies for myositis are contraindicated for people also with Interstitial Lung Disease (lung involvement, which I have) which is why he went right for rituxin. I received paperwork in the mail yesterday from my wonderful rheumy's office with paperwork to apply for the drug company's foundation to hopefully qualify for free treatment medication. Pray, cross your fingers, send good vibes that I qualify! Having to reduce my work hours since June as the disease has progressed, and having stopped work the week before as I couldn't hold even the smaller shoe boxes without my wrists giving out, has made for some interesting financial times; but one good thing about challenging finances is it may very well help me get approved for the free medication. What an interesting little vicious circle it has become lol.
Onward, forward, upward. Today my goal is to walk outside around my building, twice. I've already accomplished one time around this morning and will take my next spin later in the afternoon. I'm not giving in to this!