Saturday, May 20, 2017

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!

Thursday, May 18, 2017

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.

Wednesday, November 9, 2016

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.

Monday, October 10, 2016

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!