Tuesday, January 29, 2019

To Accept or Not to Accept...



I was going to start this by saying “Last night I had a burst of energy as I was doing my basic night kitchen work, ie loading the dishwasher and washing the non-dishwasher dishes and shining the sink,” but as is seemingly always the case when I try to describe attributes/sensations of these diseases of mine, energy isn’t the quite right word. So:


Take Two!


Last night as I finished doing the dishwasher, I set my hand on the counter to steady myself from yet another imbalance of the jelly legs and, when it felt like I lost a layer of skin peeling my hand from the invisible sticky mess that was there left by “”I didn’t do it” or “it wasn’t me,” I had the desire to really clean the counters and stove top. Every now and then I can convert the desire into accomplishing something more physical. Whether it was some slight improvement or the Starbucks 2x caffeine coffee I had earlier or a combination I got it done and it felt good.


I went to put clean towels into the NO MOM LAND, aka the boys’ bathroom (go ahead laugh, true but funny but I have to say lately they really are doing better in there, good boys haha) and saw that apparently a car mechanic has washed hands or something in the sink. And counter. And backsplash. And all the way to the top of the toilet tank. . Oh—and no car mechanic was in the house so I don’t know what it was and don’t want to...but I digress. With the mind over matter action still happening I cleaned up in there as well.


That’s it. That’s all the real extra I did! Wait not true, I did go to the store to pick up a prescription and a couple items and didn’t use a Beep-Beep (my fancy word for the motorized scooters), I walked because I felt ok enough to just walk!


Those were my extras for yesterday. I woke up around 4am to spasms in my left hip flexor shooting through the leg, making my leg stiff and in agony; I didn’t want to take anything and didn’t want to really move so I turned up the temp on my heated blanket, did some deep breathing and fell back asleep.


My alarm went off at 5:45, left hip and leg still hurting but what-are-ya-gonna-do, time to get up. I opened my eyes, turned my head and was met with that achy head pain that has become an immediate red flag that a flare may be coming. I went to turn off my alarm and my arm felt like the mysterious mechanic who infiltrated the bathroom must have tied bricks to it, and the other arm. Red flag alert two. I got out of bed, started to walk and upon finding that jelly legs had also been weighted down, I angrily recognized red flag alert three.


I couldn’t find the humor after that. I’m just going to say it, and I don’t like to say it “out loud” but I’m going to anyway:
IT’S NOT FAIR!


I quietly mumbled an angry storm of cursing while still in my room, took some breaths and hobbled my way to the kitchen and coffee, thankful I cleaned the sticky mess on the counter last as my legs started to give out I almost the same spot as last night, but worse and I threw my both hands onto said counter and stove top to keep from falling.


I’m not sad, I’m just so angry! I like angry better than sad so there’s a positive I suppose. I feel that anger is more of a concrete emotion that I can “put a finger on,” feel it, find a healthy way to express it and get it out!


I don’t think I’m headed into a full on flare, no nausea and the head pain has subsided a bit. I’ll take it easy today, I’ll take the advice I’d compassionately give anyone else to rest and recoup but I won’t take it eagerly.


I don’t know how to accept the terms and conditions of the diseases I have; I don't want to accept them! I do realize however that I have to at least acknowledge the limits and allow for recovery, like it or not, and for this morning writing about it was what I felt needed to be done. And yeah yeah, I’ll mostly be sitting yarn-arting or sleeping today, self care and all that rubbish, no worries, no lectures needed, I promise.

Wednesday, January 23, 2019

I Hate Roller Coasters



When your mommy brings you Reese's Stuffed with Pieces, the day gets a little brighter. At the same time, I hate that my parents have to come visit/help me. Okay, I don’t hate them coming here, I hate the idea and the why of it. They shouldn’t have to be worrying about me at this point in their lives, at least not in this way!

This stupid health roller coaster I and so many of us are on is just the stupidest of stupid rides, one that I not only can't get off but am stuck in that damn front seat! It keeps revealing new twists and loops hidden on initial observation of the roller coaster, and each new path on the track brings increased and almost suffocating speeds; finally, finally the ride starts slowing down, even coming to a stop--only to launch backwards. Those closest to us are forced on, locked in and zoomed onto the rickety tracks. Some stay, white knuckled and terrified into silence. Some scream in terror with eyes squeezed closed so as not to see what’s coming next or how anyone else is being affected. Some sit next to me holding my hand, while others sit next to me laughing hysterically to the point of near peeing pants at and with me in the face of the fact that at any moment the entire ride might crash down! Others use the eject button;  it’s an escape equipped with a silencer so you never hear them leave.

Yes I got all this from a pack of Reese’s with Pieces lol.

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.