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. 

Movie Meltdown

When you go from him having the most amazingly terrific day to him having one of the biggest meltdowns he's ever had, you're quickly brought back to autism. He pinched a nerve in his neck--you know that feeling, it happens to everyone; but for him it was wrong, it shouldn't happen on such a good day and it was scary and devastating. 

We had hoped he'd relax once in the theater to see Star Wars with his sister. I dropped them off and went to a much put off (years) vision exam for glasses. The bright side is the phone didn't ring until the exam was actually over (about 30 minutes into the movie); sister called to come pick them up and I could hear him crying in the background. Got my contacts back in and rushed over. 

Poor both of them. She was so disappointed about the movie AND for her brother and yes for herself too, and he was just totally and completely in the throes of anxiety. He could not understand why it hurt so much and why I couldn't fix it right then and there and was certain he was going to barf or die, or both lol.  

Motrin is starting to help and with pain relief is coming the beginnings of reality for him which translates to remorse and regrets, both things which are sure to fuel more stress and fallout, but less than this initial round today. He keeps bringing up feeling bad for his sister, then changing the subject as he tries to turn everything back positive again. 

My heart hurts for both of them. All will be better and happy again, my heart just aches for both of them tonight. 

Life Lessons by Zach: Different is Good!

He told me to come look at what he did. "See the Knights not colored? Now look at my Knight." He floored me again. #WordstoLiveBy #DifferentisGood #OutsidetheBox #Autism #ASD 

Memorial Day 2015

Wishing everyone a beautiful unofficial kickoff to summer and hoping your beach/pool/barbecue days are filled with laughter and joy as they should be--but try to take a moment to remember why we celebrate this day.

Each and every time I hear "Arlington" by Trace Adkins, I cry, such a beautiful song and perfect to bring us to the meaning of the day:

"Arlington"

Writer(s): Jeremy N. Spillman, Dave Turnbull

Copyright: Songs Of The Village, New Sea Gayle Music, Emi April Music Inc., Universal Music Corp. 

I never thought that this is where I'd settle down,

I thought I'd die an old man back in my hometown,

They gave me this plot of land, me and some other men, for a job well done,

There's a big white house sits on a hill just up the road,

The man inside he cried the day they brought me home,

They folded up a flag and told my mom and dad, we're proud of your son

[Chorus:]

And I'm proud to be on this peaceful piece of property,

I'm on sacred ground and I'm in the best of company,

I'm thankful for those thankful for the things I've done,

I can rest in peace, I'm one of the chosen ones, I made it to Arlington

I remember daddy brought me here when I was eight,

We searched all day to find out where my granddad lay,

And when we finally found that cross,

He said, "son this is what it cost to keep us free" Now here I am,

A thousand stones away from him,

He recognized me on the first day I came in,

And it gave me a chill when he clicked his heels, and saluted me.

[Repeat Chorus]

And every time I hear twenty-one guns,

I know they brought another hero home to us

We're thankful for those thankful for the things we've done,

We can rest in peace, 'cause we are the chosen ones,

We made it to Arlington, yea dust to dust,

Don't cry for us, we made it to Arlington