That D*mn Pay Stub

In one of my kitchen drawers sits the voided pay stub that was my very first paycheck when I went back to work after 20+ years of being a stay at home mom. I used to have it in my wallet so I would see it often; it was a huge source of pride and represented an incredible new path I was forging for myself and my kids. Just before diagnosis I had taken the kids and me on a vacation and I was starting to shop for a new vehicle. That pay stub represented independence and new found confidence. It represented the realization that others believed in me, too (my brother for one, who took a leap of faith in asking me to work for him).

The paycheck now sits in one of my kitchen drawers. I took it out of my wallet a couple years ago and almost threw it away but couldn’t, so I put it in the very back of my silverware drawer, thinking that would lessen the sting of seeing it and being reminded of all I’ve lost, but each time I find myself looking for the actual “lost” kitchen serving spoon/ice cream scoop/other random kitchen gadgets my hand finds a piece of paper that reminds me again of the thief named Dermatomyositis and Antisynthetase Syndrome that came into my life in 2016.

I could just throw it away. I could put it into a bin or the back of a bottom drawer full of items I know I don’t need and don’t use. I could burn it! I could shred it. I could tear it up into lots of little pieces--okay, no my hands wouldn’t cooperate enough with me to do that one but still it’s an idea of what I *could* do with that damn paystub.

The truth is, I don’t want to get rid of it. This isn’t me clinging to negativity though I could understand some seeing it that way, and at times yes, the reminder of what was lost is definitely negative and there is no way around that, there’s no spinning it. I’ve worked so hard over the past 3 years since diagnosis to always find the positive somehow/someway, and I’ll keep doing that! At the same time I’m slowly, albeit very very slowly, learning that it is okay to accept the negative realities of having a serious, debilitating, chronic illness. It is my reality now and entwined into every fiber (quite literally! lol see I still have my sense of humor) of my being. I’m working on seeing that piece of paper now not only as what I’ve lost but also as a reminder that I can still have those feelings of confidence and strength, I just have to find new ways to reinforce that about myself in spite of my disabilities.

The Worst of Both Worlds--Myositis

Dermatomyositis (DM) is classified both as a neuromuscular disease and an autoimmune disease. It is thought that the inflammation resulting in cell damage is created when the immune system attacks healthy muscle tissue and blood vessels under the skin. -- From Myositis Support and Understanding

Basically, DM is so rare researchers are still learning about this disease (as well as all the myositis'), and they go back and forth as to whether it is an autoimmune and/or neuromuscular disease (hence my "worst of both worlds), which is why myositis is considered to also be under the Muscular Dystrophy "umbrella". The only way to keep research continuing is to help raise awareness, and it is as easy as sharing as much as you can about these diseases! Raising awareness is saving lives. It was not too long ago (literally within the last 10 years) that the prognosis for DM was about 5 years. Now people are living many, many years thanks to the increase in awareness which has resulted in an increase in research. Please help keep that going!

A Light in the Dark: My Realities with Dermatomyositis

This year has been quite the journey; yes obviously a journey of the physical body but also an incredible journey of the emotional and mental facets of the mind and body.

I still see over and over when my Rheumatologist Dr. Josh pulled his chair close to where I was sitting, after confirming my diagnosis and knowing that I knew the seriousness of this disease, he looked me in the eyes and said:

"It is treatable. It is absolutely treatable."

Those words were both reassuring and worrisome. Reassuring because he said it so confidently and calmly; worrisome because he felt that he needed to assure me this disease is treatable. I replay that moment so many times in my head, I don't know why really, I just know it's stuck on repeat. I guess maybe it's the fear that still sits inside my heart. No matter how confident I get to feeling about how I'm doing, the fear of relapse is always there.

People die from these diseases (the nasty little myositis family) mainly because each myositis is so rare too many doctors know nothing about them and by the time many patients are finally diagnosed correctly, too much damage has been done. That is why I am desperately asking you to at least read what I post so that you can learn and at least have a bit of familiarity with myositis. You just never know who you might be speaking to that has never heard of it, it might be that someone they know has had these crazy symptoms and is sitting in the hospital getting weaker and weaker, with high muscle enzymes or mysterious rash or shortness of breath--no one can figure it out, then suddenly you remember something you read or saw posted and mention it to them, it could be the info that saves their life or at least maybe gets someone looking for the zebra rather than the horse:

"Doctors are now being trained when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments"

From Myositis Support and Understanding

I've been feeling stronger than I've felt in well over a year, and it scares me. I don't like to admit it. I like to remain positive and upbeat; but I don't feel that I'm being fair to awareness. How can I raise awareness if I'm not honest and real about all that comes with dermatomyositis? I am scared every single day, there I said it. After a year of misdiagnosed pneumonia, not being able to get out of bed, not being able to cut my own food, getting meningitis twice, spending 3 weeks total in the hospital, I guess being scared is an understandable side effect.

Even on the best days, there is the fear of what the next day might bring. Will all my progress be gone? Will something new decide to join this insane party? I don't dwell on those things and I've gotten better at pushing them back down quickly. Hey at Physical Therapy yesterday I didn't cry--I didn't even tear up--when I had a couple set backs because my knees continue to worsen even as other areas of my body are improving. I announced to my Physical Therapist "I'm growing up, I didn't cry!"  I've learned to embrace what IS good and what is GOING WELL. Still, there are things that get to me. Last week I was walking outside and saw a woman kneeling in her garden, working and digging and weeding and planting. She jumped up, stepped back to look, jumped back down to dig and adjust, jumped back up to admire...you get the picture. I cried when I got home. THAT USED TO BE ME. I can't say that will be me again, I have to keep myself real and accept that I may never quite have that exact movement ability again. BUT I've learned that adaptations are not just useful, they are welcome and OK! I'm learning that accepting my limitations is allowing me to push forward with what I can do. Do I need a wheelchair or a "beep beep" (the crazy electric scooters at the stores) sometimes? Yes I do. And that is okay.

My PT Alycia and my OT Chris are amazing, as are the aides at my particular rehab place. I believe that both OT and PT have me at the very least learning how to use what I do have to make the most of every day. Through PT/OT I have learned to accept that sometimes just showing up is a huge accomplishment. It isn't about how much I do or how fast I do it, it's about showing up and coming back and trying again and again. Alycia has to remind me now and then that it's the disease not me that might have me going a bit slower. She'd probably say she has to remind me of that more than now and then, but she probably won't see this blog entry so I'll stick with now and then lol!

Please please please share this or as I said, any of the myositis graphics/info I've posted. Yes for me but also for who knows who might be helped. Remember, only 5 in 1 million are affected by dermatomyositis. That is only .05% of the population!! Share to make aware.

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.

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! 

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!