It's Myositis Awareness Month!

Hello there! Happy Myositis Awareness Month! I am doing a fundraiser for Myositis Support and Understanding - my first ever! Every little bit counts towards getting research and legislation that will help those with a Myositis disease! ⇨ Click here to donate! It's my dream that in my lifetime, people will not know what Myositis is because it isn't a big deal to have, not because it is so rare. ___________________

For those of you who don't know my story, here is a [relatively] quick review! In about 2006, I started to have trouble lifting my arms and walking up stairs. I was working as a hair stylist at the time and assumed that maybe my body just wasn't cut out for a career on my feet. I got a desk job and as the years progressed, I continued to have trouble with stairs and it became difficult to hold my arms up long enough to blow-dry my hair. I assumed I was "getting old", even though I was only in my late 20's. In 2009, I started to notice rough little bumps on my hand and my cuticles got red and irritated. After a scary experience with one dermatologist, I did a little research and found a new doctor. She took one look at my hands and said, "Wow, that looks like dermatomyositis!" She ran to her office and returned with a massive medical book, apologizing for needing to look up the tests to run, but explaining that dermatomyositis (DM) was very rare and not something that she sees every day. She asked me if I had any trouble lifting my arms, or going up stairs and I was shocked. I couldn't believe the two things could be related. The biopsy and blood tests came back a couple of days later and that was it, I was officially diagnosed with DM. The following 2 months were a completely terrifying whirlwind of appointments and tests. And EKG, MRIs, a muscle biopsy, mammogram and an unbelievable amount of blood work. DM has an increased risk of cancer and complications, so all the major ones had to be ruled out. My rheumatologist had me start taking immune-suppressing drugs to control the disease and try to push it into a medically induced remissive state. It was shortly thereafter that I had my first "flare" which eventually pushed me into medical leave from my job. By 2012, I had released my position, and had just got back on track from my flare. I wasn't satisfied with how I felt, though. I wanted more from my body and from my life. I was hired back by my company's "parent" for an at-home position that I still have today and cherish. My DM decided to flare again in 2015 and I was close to being in the hospital. I struggled to walk up the stairs and could barely keep awake for dinner. Massive amounts of Prednisone both saved my life and nearly killed me. I told my rheumatologist that I couldn't take it anymore and needed a better solution. I wanted to look into drug infusions. December of 2015 changed my life! I had my first Rituxan infusion and after months of fighting back with all my might, I finally got the life back that I had been craving since my early 20s. I can workout, walk my dogs, cook meals, run errands, do housework and GOLF! I can live a life that makes me happy and fills up my soul. I still have to make time for rest and recovery. I still have days where my body just doesn't want to go. I still have to modify what I put into my body to keep it happy, but I am living my life. I don't have to spend my days on the couch, wishing that I was able to join my friends, or make it to an event. I have my myositis support groups to thank for helping me through the decision to start Rituxan. I have research to thank for supporting my doctors in their recommendations for me. The combination of drugs that I take is a result of other patient's experiences as well as current information that we have about this disease. Rare diseases struggle to get knowledge passed around to medical professionals around the world. The Myositis Association and Myositis Support and Understanding help to bridge those gaps which helps with correct diagnoses and people getting the help that they need! I'm passionate about Myositis Awareness! Thank you for taking the time to learn a little about my experience and this crazy disease! Thank you, as always for supporting me and my family throughout this journey! XO, Maren

Tu-mor or Not Tu-mor…

Warning: Long story that I promise circles back around and makes a point. 
This is also a look into life with ongoing medical appointments. Yes, it gets stressful, but it’s all to make sure that I’m healthy, which is the goal! 
My doctors are excellent and work hard to stay on top of my health. I have a really great team looking out for me.
CliffsNotes🅡 version listed at the bottom under "Takeaways" 


I saw a Gastroenterologist in January. Having Dermatomyositis (DM), any Gastro Dr. is on high alert for dysphagia. 

Dysphagia is when your throat muscles weaken and you have difficulty swallowing and is a potential risk for someone with advanced DM. 

I had been having some trouble swallowing pills. This on top of thinking that I was having a heart attack at one point (long story) and feeling nauseous after eating led my general practitioner (GP) and I (after a few tests to make sure that my heart was healthy) to assume that I was experiencing GERD. 
My heart is fine, so my GP recommended that I take Zantac twice a day, which I have been for a few months and feeling pretty great. 

I did want to discuss the whole GERD thing further with a Gastroenterologist however, so I made an appointment. 
“Gut” health and auto-immune disease have been closely correlated and I wanted to make sure that I was as informed as possible of how to best care for myself and my own potential dietary needs. 

As I mentioned though, any Gastro Dr. will basically freak out at the word “Dermatomyositis” (which he did) and want to first rule out Dysphagia (which we did). 

I had a “Swallow Study” done in February, where a radiologist and speech pathologist had me eat/drink barium-laced foods/beverages and watched/analyzed via x-ray.

No dysphagia! 

So we were to move ahead further discussing GERD. 

Then in March I got the most terrible, sharp pain in my left side that radiated to my back, waking me up at night. 
It lasted over a week and prompted me to visit urgent care where they did a CT scan of my abdomen and found two mass/lesions on my liver and pancreas. 

I discontinued Azathioprine/Imuran right away per the advice of my Rheumatologist (which I have been taking since my last big flare in 2015 and wondered if I still needed, but was too afraid to alter meds since I’d been feeling good) and went in for specialized blood tests from the Gastroenterologist, all of which were in the normal range. 👍

An MRI the following week revealed a 3.3cm focal nodular hyperplasia (FNH) in/on my liver and “stranding” at the tail end of my pancreas. 

I met again with the Gastroenterologist last Friday. 
FNHs are benign tumors that are usually nothing to worry about. We’ll look at it again in 6 months (via MRI) and see if anything has changed and go from there. More than likely we can just ignore it! YAY! 🙌

The not so awesome news, but nothing to be seriously worried about is that I do have pancreatitis. 
This is what has been causing the ongoing pain in my abdomen and was caused by my Azathioprine.

Pancreatitis may have been causing my GERD symptoms as well (nausea after eating and abdominal distention). The FNH can also cause GERD-like symptoms, but the Gastro Dr. feels pretty confident that mine is asymptomatic and the pancreas is what is causing my discomfort. 
So we table the GERD talk for another 6 months… 

The pancreatitis is what we’ll mostly be looking at in 6 months on the MRI. The Gastro Dr. is confident that with a few adjustments to diet and not taking Azathioprine, that it should resolve on its own. 

The diet adjustments are similar to what I have been attempting (semi-successfully) for the past couple of months, but now need to kick it up a notch (or fifty).
Avoid fatty, salty, high-sugar, processed foods and alcohol. An anti-inflammatory and auto-immune diet is also recommended and that just so happens to be my ongoing 2018 goal! 
Wooot! 🎉

The day after learning this, I decided to have a cider beer and a cupcake which resulted in almost instant stabbing pain in stomach. Okay! Point taken! 

I feel good about the current plan, especially since it gives me motivation and accountability for health goals that were already important to me. Hopefully, I’ll be able to really contribute to my own healing! 

Takeaways from this post: 
• I have a healthy heart and throat muscles. 
• I have benign FNH tumor in/on my liver that is likely nothing to worry about! 
• I have pancreatitis, that [while a little uncomfortable] is not life-threatening and should resolve within the next 6 months. 
• I may need support from friends and family to help me resist the fried foods, sugar and booze! 

In other news, I got my energy back last week and have been feeling energized and like myself!
We got 17” of snow over the weekend (yes, it’s APRIL)! 😱
Therefore, we unfortunately didn’t make it to the golf dome to try to hit some balls for the first time since shoulder surgery, but I’m ready and raring to go! 

My guess for an early April opening day at the course was just a little off! Haha! 😂
M

April Check-In

Infusions are done. I’m exhausted.

These past two were a little rough, but I made it and now gladly on my way to feeling great again for 6 months!

Infusion #1 broke me down. My veins weren’t cooperating and my main nurse was passive aggressive and frankly just awful. The stress was just too much. I cried. Recovery was just a few days of resting.

Infusion #2 was much better, although the recovery has been more than I’m used to. I’m on day 18 post infusion and still feeling like I was hit by a train. Like in Ghostbusters II when the ghost train drives through Winston. That’s how I think I feel. Haaha. (click here if you don't remember that scene 😄)

So, now I’m good until end of September. Then, I’ll be on track for infusions in April and October, avoiding summer completely! Hooray!

Waiting 7 months instead of 6 was tough. The Rituxan really started to wear off at just past the 6 month mark and I was really fighting through exhaustion. I’m thankful that I didn’t flare (although you should see my hands right now!) and I’m glad that I won't need to do that again!

Now summer can be for me! Golf, gardening and all the things that we Minnesotans do when we emerge from hibernation time!

I have had a few additional tests/findings that I will save for a separate post. One of those findings has me holding off on Azathioprine/Imuran until further notice, which could be a reason for some additional fatigue.
I hope that by the next time you hear from me, I won’t be fighting falling asleep while typing!

Happy Spring!
M

February 2018 Update

Hello again and happy February!

All is well here, and I hope the same for you!

Struggling a little as I await my March Rituxan infusion. Getting tired and feeling run down. You may recall that I am pushing out a month longer than usual, to try to get my infusions to land on months that don’t cramp my style 😉.

I chose the following quote for our letter board for the coming weeks as it reminds me to focus on simply doing my best today.

"The best preparation for tomorrow is doing your best today." 

H Jackson Brown Jr. 

I can do that! 

I continue to plug away on my shoulder PT and get activity in when and where I can. I have been snowshoeing around the yard on days that I know I have a few open days to follow in case my body revolts. So far, I have just needed couch time for the rest of the day and I can handle that!

My recent checkup with Dr Meagher was positive. 

We discussed my current state and symptoms and the plan to continue with Rituxan indefinitely. She’s anxious for me to get my infusion, as my Gottron’s papules have returned and are getting pretty uncomfortable and the exhaustion is getting intense. Thankfully, I have not had any muscle weakness return at this time. 

My next infusions are scheduled for March. 

Gottron's Papules on knuckles.

Labs:

All within an acceptable range.
Red Blood Cell (RBC) count was low
Glucose was a little high.

One goal of mine this year is to take it up a notch with the anti-inflammatory foods.
Full-fledged Auto-Immune Protocol (AIP) has been a little scary for me, as it is about 100X more restrictive than Paleo (ie. it removes all things considered to be “gut irritants”), but there are people who have had such impressive results that they have even gone into remission with it.

Over the past 2 years I have eased into these changes, just dipping my toe in the water. I have greatly reduced my processed food, dairy and white flour, sugar, etc. I have even reduced my “nightshades”, which includes tomatoes (*sob*).

I slipped back a little after my shoulder surgery. Apparently Cheez-Its are not AIP compliant. I not only gained weight, but I am achy all over among other less than desirable effects. 

So, we begin again!

This time around we are adding the top anti-inflammatory foods to our regular rotation. Some examples are:
Cruciferous vegetables, including #1 winner Bok Choy (which I have never prepared, myself) and healthy fats, including salmon 😧 (which I am bound and determined to find a recipe that I like). I’m also taking a turmeric and ginger supplement and using bone broth instead of chicken/vegetable broth where I can.

I will also be easing my way into the GERD (Gastroesophageal Reflux Disease) Diet. More on that in my next post. Ahhh, health is fun 😑.

Thankfully there is a lot of crossover on these two “diets” (read, “lists of food”), so that makes me feel better. So does calling them “lists” instead of “diets”. Just saying.

My next post will include a little ditty on GERD as well as a likely update on my March infusion! Until then, stay warm and cozy!

M