Monday, May 21, 2018



Hello!

Just 21 days into Myositis Awareness Month and I am blown away by the support that I have received from friends. My goal was $380 and we have raised over $800!

I wanted to take a moment to explain why I am asking to push as far as we can past my initial goal amount.

Here is a real view into life with dermatomyositis (DM); one that I don’t generally talk about.

What you see in this photo is the bill that my husband and I get 4 times a year. What you see on this bill is ONE Rituxan infusion at $32,500. 


After insurance (of which we have an excellent plan), it costs us about $4,000 a year to receive the medical treatment that has been saving my life for the past 3 years

This is on top of the specialists that I see about once a month with a $50 co-pay, and the several life-saving medications that I take, some of which are not fully covered by insurance. I will typically have an MRI as well to monitor activity in my muscle tissue, which generally runs about $600-$800 per scan after insurance.

I am sharing this because I know that we are tremendously blessed, and it breaks my heart to know that there are families out there that cannot afford to try new treatments that could potentially better (and extend) their lives.

Before I tried Rituxan and got the right combination of medications in my system, I felt like the best part of my life was over. 
I read it every day in my support groups; people giving up, feeling like they will never have the life that they want.

Cost just shouldn’t be a factor in getting the treatment that you need to live your life and be the healthiest version of yourself.

I chose Myositis Support and Understanding as the recipient of my fundraiser because along with working hard in Washington and getting dollars to research, they help to financially support families that need it to get the treatment needed to save their lives.

Click here if you would like to donate! 

Thank you so much for taking the time to learn more about myositis this month! 
I am so grateful for your support and care for me, my family and the myositis community!
M

Wednesday, May 16, 2018

What is a myositis anyway?

Myositis Support & Understanding has a great article that explains what myositis is and how it is an autoimmune disease. 
⇒ Click here to read more!

Basically, myositis is muscular inflammation. 
When myositis is caused by your immune system attacking your muscle tissue, skin and lungs, it becomes part of the "Idiopathic Inflammatory Myopathies" family, which includes Dermatomyositis (what I have).

Dermatomyositis is diagnosed in adults, but there is also Juvenile Dermatomyositis (JDM), which very aggressively attacks kids. 
While I'm not old by any means, I had a great childhood. It's not fair how JDM robs little kids of what should be the most fun and carefree part of their lives.

I hope that modern medicine can one day find a cure for JDM first, and the other inflammatory myopathies to follow ❤️

⇒ Click here to make a donation to my Myositis Awareness fundraiser!

We can make a difference in the lives of myositis patients and their families with increased awareness, funding for research, supportive legislation and financial support for families that struggle to finance the necessary treatment.

Monday, May 14, 2018

WOW! Let's raise even more!

Holy Cow! 😁
$535 for Myositis awareness, research and the fight for more supportive legislation!

I am so blown away by the support from my friends.
I would love it if we could keep growing this number even more! 

Myositis Support & Understanding Group also helps to financially support families that cannot afford the treatment that is needed to keep their Myositis fighter alive.

The more we can contribute, the more myositis patients can have a chance to live the life that I have been blessed to live after finding the right treatment that works for me (which took 6 [very expensive] years).


Perhaps I can entice you with these fashionable rubber Myositis Awareness bracelets! 😄
One for every donor!



via GIPHY

Click here to donate! 
Happy Monday friends! Thank you for your support!
M

Thursday, May 10, 2018

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