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A New Treatment

Almost exactly 3 1/2 years ago I first starting noticing the itchy little blister/rashes that would come and go, my first ANA test (and second and third) was positive, I had butterfly type face redness, and lupus was suspected. I look back and think how my rheumatologist at the time--who is once again my rheumatologist--was simply being proactive in prescribing plaquenil. I didn't take it because I didn't understand "why" if I didn't have an actual dx and I was scared to start something I thought maybe I didn't need. Maybe it would have helped me, or maybe it would have affected me badly. Now I don't question him, or at least try not to lol. I trust him so much and am so thankful he is my doctor! 

I've not responded as well nor as quickly as Dr. S would have liked to see after rituxan (though I absolutely have had improvements as to my lungs!!), and the swallowing issue hasn't resolved; in fact it continues to progress. The progression is very slow, thankfully, but progressing and, I won't lie, it is a bit disturbing when water just won't go down. Other symptoms have returned as well, and while I have started having a good day or two (also I'm sure thanks to rituxan), Dr. S and I agree that I need a little more help, a "boost" of sorts.

Next week I begin another treatment called IVIG:

IVIG is a blood product derived from large pools of donated human plasma. IVIG boosts the body's immune system response, and doctors don't know the exact reasons IVIG works in some myositis patients. IVIG is usually reserved for cases resistant to other treatments, and people with inclusion-body myositis typically do not benefit from IVIG unless they have accompanying swallowing problems.--from The Myositis Association

I'm nervous but sure it will work out fine. It might be a rough week or so as it is 3 days in a row of treatments ( come see me!) and I've heard/read IVIG tends to have more side effects than rituxan. It tends to do very well for people and I do believe it will help, particularly in conjunction with rituxan, but I'm certainly concerned about side effects for myself, but especially for my kids, I feel so bad when I'm "down". What a journey this is turning out to be.

A Birthday and My Reality

First the good! Yesterday was youngest son's (ASD) birthday and party. For the first time in many, many, many, many years, he had friends come celebrate his birthday, friends that he chose; he was so completely happy I have no words to describe my own happiness. The several random and spontaneous hugs I received from him through the night said everything that couldn't be expressed verbally. Even with joy being such a wonderful emotion to feel, it is a strong one and overwhelmed him a bit but only in a way that he knew when he was done and ready to go home both from exhaustion and, I believe, building stress levels from the intensity of the happiness. Only slight worries arose once home, some worry about sleep and only one wake up and walking, otherwise all calm and wonderful. 

Today I actually started thinking that a return to work was maybe around the proverbial corner. Not that I wasn't feeling my disease today, but I wasn't feeling it so intensely. That was also earlier in the morning before I had done too much; I was determined to push today, start trying to get caught up on laundry and vacuuming and since I wasn't feeling too much pain well into the 11am hour I felt like not only could that happen but maybe just maybe a partial return to work was in the near future.

I got laundry folded and sorted, dishes caught up and put away, dog walked and fed, bed made, bug killer sprayed all around outside, windows opened, stop leak stuff put into daughter's car, and the stove top wiped. By 3 the pain started kicking in and my knee stiffness really flared up, but then precious doggy decided to throw up because Mommy didn't add cut up chicken into her dog food so she didn't eat it so she had medicine on an empty stomach; it wasn't really a huge clean up but it did involve being on my knees and scrubbing, and that did me in. My arm strength is gone, and the walking-through-mid-thigh-deep-water heaviness arrived. Reality once again crashed over me like Hurricane Matthew waves crashed over piers this past week. 

I realize I have to get to, no, I NEED to find a level of acceptance with this disease. I just don't know how to get there or find it. I used to think acceptance of dermatomyositis as my life meant resigning myself to it, sinking into it, and I was not going let it get me like that. I'm beginning to realize that some level of acceptance has to happen to maintain my own mental health. I keep getting my hopes up unrealistically and then feel so incredibly disappointed as soon as the symptoms slam me back down.

Tomorrow is a new day, and a follow up with my rheumatologist now that the first rounds of infusions are done. It will be good to get his input as to what I can or might expect as to the swallowing issues I'm having, along with other symptoms that continue to appear. I'm mentally ready to start physical therapy I just need to know when I'll be physically ready! I'd love to start pool therapy but unfortunately my insurance doesn't cover any type of gym therapies. We'll see what he says!

Ups and Downs and All Arounds

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!

One Week Post Biopsy

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! 

Sometimes that's all it takes; allowing yourself to go to sleep to wake up to a new day. I don't understand all that is happening to me, and every now and then I find myself feeling the edges of anger but I don't want to go there. I'm not suppressing it, I just don't want to go there. Is it faith? Maybe. YES. I honestly do believe there's a reason for everything. I don't pretend to know what the reasons are or if the reasons make sense. I believe to get to point "c" you must get through points "a" and "b", and sometimes those points in between ain't so pretty...but skipping them isn't an option if I want to keep moving forward.

My daughter mentioned karma the other day, wondering if it really works the way we think it does. I was glad she said it out loud because I have those questions myself, but in the end I have to believe it comes around. I only have to look at my children to know beyond certainty that YES karma does as karma should and there is absolutely a reason for everything. I don't like that my kids are worried about me--I don't like that I'm worried about me lol; but being surrounded by love (and mess, and chaos, and crazies) fuels me to know that if nothing else, each tomorrow is a new and fresh start.

Don't doubt your courage, it's in you. I'm scared at times--there, I said it out loud. I'm going to advise myself as I would any of my family and friends and recognize that even though I might be afraid at times my faith and COURAGE will carry me forward.

My Life Now as an Autoimmune Cocktail

I've been waiting until my oldest was back from Israel to write about what's happening. She's back safely in the US, so here I am!

It appears I have an autoimmune disease cause Dermatomyositis (DM) with lung involvement known as Interstitial Lung Disease (ILD), along with Rheumatoid Arthritis (RA). There is also Raynaud's Syndrome, Celiac Disease, and of course Fibromyalgia (though I wonder about that one...), and I tested positive for Sjogren's and Lupus is also in consideration. Fun times! lol.

 I am scheduled for surgery to have a deep muscle biopsy next week to confirm the diagnosis of DM and soon after will begin treatment with Rituxin, a chemo drug used as an immunosuppressant for both DM and RA and particularly for people with lung involvement. I've been on prednisone off and on since early May; each time I've weaned down and off all symptoms come flaring back (fever, extreme stiffness/swelling/pain, rash--to the point that getting out of bed without help isn't possible), so I'm now on a maintenance dose of prednisone that at least keeps me functioning! 

I'm not going to go into details just yet of any of the diseases until I get a final diagnosis,  because many of my symptoms line up more with one disease than the other, with lots of overlapping; this is actually extremely common with autoimmunes--it seems they like to each bring friends to the crazy immune system-gone-haywire party. In a very small nutshell, the 3 main players (as it appears right now): 

• DM (and possibly polymyositis PM)--immune system attacks the muscles in the body
• ILD--immune system attacks the lungs
• RA--immune system attacks the joints (and can also go after muscles and organs)

Right now the main concern is the lung involvement; I know that is why my rheumatologist has already put in the request to insurance for approval of the treatment plan before final diagnosis so we don't have to wait as long for that. 

Emotions are all over the place, though the main thing I'm feeling is FRUSTRATION. As my wrists and hands get weaker I'm dropping things all the time and it makes me crazy. I trip a lot more than my usual clutzy self always has because my ankles and knees tend to give out on me, and I've begun to have some balance issues that I can't tell are from the new dizzy sensations I get or something with my eyes. Typing is torturous at times as the bones on each wrist and fingers hurt to the touch. Each morning when I wake up I think okay, today's the day this will all be gone; I turn over in bed to get up and the pain in my knees tell me otherwise. I'm exhausted usually by around 11am; and where I used to be able to work 8, 9, even 10 hour days no problem now I seem to hit a brick wall after about 4 hours. I'm pushing through because I know the worst thing I can do is stop moving, I know I have to keep moving no matter how small it may seem compared to what I used to do and I'm gonna keep on keepin' on. 

I've already heard all the different ways this can be "cured," like juicing, supplements, willing it away, eating this/drinking that. I know people mean well and want to help but while I do believe there are some things that can certainly HELP some symptoms, medical treatment is what is needed. I'm sure many of you have seen headlines on social media "I cured my ______________ with this one ingredient!" Yea, nope. Read the full articles and/or research and you'll see probably 99% of the time they have and/or ARE taking some type of medical treatment. 

There is no cure for any of these diseases but the treatments have come a long way especially over the past few years. I believe in and trust my rheumatologist and am so ready to get this treatment party started!

Acceptance is Beautiful

So thankful for the very special people that have entered our lives who have been deemed a "buddy" by my #ASD youngest. They are the people that just accept him and enjoy him and embrace who he is; they have been our own personal savior at times without knowing it, and I mean that sincerely. Yesterday was a very difficult day for Z, lots of stress and triggers and challenges. As his "everything should be happy and good" thinking struggled to fix all the things that went wrong he just was so overwhelmed and had a headache and was dizzy and nervous. When he realized it was Jeff day he wanted to go see his CVS buddy, but was so stressed that we almost left the store as fast as we got there when he didn't see J right when we got in. 

I found someone to ask if J was there and when the answer was yes and that he just stepped to the counter, the smile that appeared on Z's face brought tears to my eyes. They laughed and talked like always. Everyone that works at the store (or almost everyone) knows Z and they welcome him and they know J is his buddy. This guy (J) always makes time for Z and/or has Z go around the store with him as he works. I can't count how many times I've tried getting Z to let J work because I'd worry he was bugging J, and both of them would do the "oh mom" eye roll. Jeff and all of Zach's special buddies over the years, have had incredible impacts on Z's life and therefore also on this grateful Mama's world.