Thursday, June 22, 2017

Oooops! It’s already June!

As par for the coarse, I have completely forgotten to post since March! But, if you know me by now, you know that “no news is [usually] good news”.

Last we spoke, I had just received my last infusion and was a little wiped out from a few minor complications. The area where I had the blown vein is back to normal minus any visible veins – I think that they rerouted!

May was Myositis Awareness Month!
You may recall that as of last year, The Myositis Association decided to dedicate the entire month of May to spreading the word about Myositis (previously we only got one day in September)!
Myositis sucks! I have however, noticed that since my diagnosis in 2010, that there has been a lot more momentum in “marketing”, awareness and research! This is all excellent!
To learn more about this family of diseases, visit

My progress!
To make a REALLY long story short, since my last infusion, I struggled a little with getting back on my feet. Just in the past month, I am really starting to feel awesome again – so that was about a 3+ month turnaround.

I had some oral surgery that (in my opinion) put a lot of stress on my body.
I have a theory (stay with me here) that when someone who relies on immune-suppressants to keep healthy encounters a situation where the body instinctively wants to boost the immune system to fight (like a cold), that the disease that needs to be suppressed isn’t as controlled because the immune system is fighting extra hard. Does that make sense?
I have this theory because ever since my dermatomyositis has under control, and I have a cold, an injury, etc, my muscular symptoms make an appearance. For example, for about a week after my oral surgery, I was having difficulty walking up the stairs. Then, the as the pain subsided, suddenly I was fine once again.
This might not be scientific, but sure sounds right to me!

So, aside from imagined theories, I have been feeling really great!
I saw my new rheumatologist on June first. I get my lab results a little differently now. It’s been a little bit of a learning curve with my new doctor. She is extremely smart and I love her whole body approach to care, but I [unknowingly] was getting a lot of hand-holding with Dr. Grandits.

These rheumatic diseases are f*cking confusing; they’re scary and they’re a pain in the ass.
I can’t even imagine how other people know what the hell is going on with their own care if they aren’t like me, who blogs about their progress (which has become an incredible reference tool for me and my doctors) and who charts all their own labs on a damn spreadsheet so I can ask the right questions about my results each time.
I mean, I need to know what is going on in my body and with my care team. Do other people not need/want to know these things or do they just not have the tools, and then they feel helpless or lost?
Anyway… maybe I’m seeing a future project/”suggestion box” item. Onward!

6/1/17 Labs Everything was within normal range (and even a little bit of an improvement from last time) except the following, which Dr. Meagher said was normal for me and the medication that I’m on:

ALK Phosphatase 50-136 IU/L = 41 (L) 
MCH 26.0-34.0 pg = 34.6 (H) 
MCV 80-100 fL = 102 (H) 
Red Blood Count 4.00-5.20 mil/cu mm = 3.82 (L)

The plan is to continue with a 6 month Rituxan infusion plan (next to be in August). We submitted the request right away to hopefully avoid any delays annnndddddd….. APPROVED!!
Blue Cross approved me through June of 2018, which means that I have my next 2 infusions on schedule. Such an incredible relief. I am SO incredibly thankful.

Today I sit here feeling pretty damn great. I have a little bit of a DM rash situation on my upper back and shoulders and also on my face. My Gottron’s Papules are coming back a little, too – so I need to watch keep an eye on that. I have a dermatologist appointment next month, so hopefully she can help me out a little, since Dr. Meagher doesn’t want me to try the Dapsone again unless it’s absolutely necessary.

I am just so flipping happy to feel good and to be continuing my journey of overall health and wellness.
I still have my limitations, but they are acceptable to me. I have had 7 years now to adjust to needing breaks and my own rest time. I continue to learn how to gauge where I can push myself, and where I need to back off.

Also super exciting news in my world – my Teddy is doing great! No reoccurring tumor causing any trouble for him at this time. We've been plugging away on his bucket list and having lots of fun in the process.
I’m also finally working on my life goal of learning how to golf! I have been building enough strength back (at the damaged muscle tissue sites) to start to play and keep up! I get so damn tired, but I really love it!
I’m so thankful that my job allows me to rest enough during the day, so that I can work on continuing to enjoy an active life, which has been my ultimate dream since my diagnosis.

I still have a little stubborn prednisone tummy to get rid of and muscle to build back, but I am still plugging away and feel so dang happy to be here!
My energy level has been great for me and I have been having a wonderful summer. I have a 5K to walk next month and I'm learning how to kayak in August! I’ve been on cloud 9!

Thank you all for your ongoing support. I feel the love, the prayers and high fives – they warm my heart.