Monday, June 18, 2018

Adios Prednisone!

I had a great check-up with my rheumatologist last week!

My counts are the best that they have been in years! I get to discontinue the prednisone and pray that I can hold steady without a flare without it.

A few months into working on the Paleo diet, my glucose is the lowest ever recorded (since 2010). Even my red blood count was at the lowest end of normal, which hasn’t been the case since the beginning of 2016.

MCV (Mean Corpuscular Volume) was the only count that was high, which is the volume in a cell and I have no idea what that even means for me other than it’s been high since the fall of 2015 (which is when I was last on prednisone and had started taking Azathioprine again).

Oh, and no Lyme’s disease (I found a deer tick stuck in my leg a couple of weeks ago), glad that the lab was able to check me out! Those suckers are sneaky!

My rheumatologist was excited about the post-surgery Cheez-it weight that I have lost so far and was super impressed with my current daily step-average.
We talked about scheduling in a little more rest time, sunscreen and my ongoing struggle with walking up stairs.

Trouble with stairs is pretty standard with dermatomyositis and she wasn’t surprised to hear that even when I have been at my best in the past few years, those damn stairs are never easy. That’s okay. I can live with that.

She shared with me that she would really like it if I never used Azathioprine again, as the risk of developing pancreatitis again could be devastating. I agreed, however shared that it’s been tough to have my hands roughen up again and I felt that the timing of my flare was more than a coincidence. 

We discussed keeping a drug called Cellcept in our back pockets for future need. IVIG being an absolute last resort (thank God). 

Cellcept is another immune-suppressing drug that just focuses on a different molecule/protein/antibody (obviously, I forgot the word…) than Azathioprine. I’m not super thrilled about this drug, but we’re running out of options. 

IVIG is an IV immunoglobulin treatment that uses donated and cleaned up blood plasma and it's antibodies to [hopefully] block the immune system’s destruction of muscle cells. There is a pretty high rate of meningitis with IVIG, which can kill people with suppressed immune systems like me, so this is a definite last resort drug. 

She was honest about hoping that I could hold without it, as she worries about keeping my immune system so low all the time. I share her feelings, as I can’t ever seem to hang out with kids without getting a cold that lasts for weeks, which is a huge bummer.

We’re hoping that I can make it to October on Methotrexate alone, and then my next Rituxan infusion will sort of reset my system and set me up for success in the future. I like this plan, even though I’m also terrified of it.

Hopefully, I won’t have to see her until my next infusion in October!
If you don’t hear from me, I’m enjoying the summer and hope that you are, too!

XO, M


Wednesday, June 13, 2018

Happy Diagnosiversary to Me!


Longest putt to date for my Diagnosiversary - about 40'!
I am so proud to celebrate my 8th Diagnosiversay this year after raising $1125 for myositis awareness and support in the month of May! 

Myositis is often misdiagnosed or undiagnosed, so I choose to celebrate my day! 

This year I was able to spend my diagnosiversary golfing with my husband and having fun with friends.
I felt great and was tremendously grateful to be here!


Thank so to those who stepped up through my fundraiser and to those who have lifted me up and supported me and my family over the past 8 years. 

I really wasn't expecting such a raw and emotional response to donations to my fundraiser, but each one really touched me deeply in my heart. 
My original goal of $380 was blown out of the water with the generosity and love from friends from my past and present. I continue to feel deeply moved as I reflect on these gestures and cannot thank each person enough. 


It was a bittersweet Myositis Awareness Month, as I did begin to flare for the first time since 2015. I guess my body does need Azathioprine after all. 
A few weeks in on prednisone and I am finally starting to feel better, though. I hope that my counts look good at my check-up this week so that I can begin tapering off of this drug.

Each day is truly a gift. Whether you fight through it or you sore through it, we get each one to teach us such valuable lessons and breath life into our souls.

Being in the middle of a flare is so scary. I couldn't even bring myself to talk about it. As I feel myself coming through the other side, I see the value and lessons that it [oddly] adds to my life. It's a strange place to be in, just sitting around waiting to feel better and not knowing if it will get worse.

The scariest thing for me was actually starting prednisone and fearing the dark space that it took me to in 2015. Thankfully, I am not flaring that badly, and I am also not on the same dosage of prednisone. Looking back on that time of my life was hard though.
It makes this diagnosaversary extra special - I am able to look at my history with dermatomyositis and make decisions that I feel good about. I can reflect and reference the past 8 years and this blog as a guide. I don't have to sit on the sidelines with my life passing me by.

I am forever grateful for that scary day in 2010 that became my diagnosaversary!

If you would still like to contribute to Myositis awareness, research and support, visit Understanding Myositis or The Myositis Association.

Thank you from the bottom of my heart for your love and support.
Maren

Tuesday, May 29, 2018

Home Stretch!


With just 2 days left of Myositis Awareness Month, I’m truly blown away by the support that I have received.

Together we have raised $875 for Myositis Support and Understanding, an organization that not only fights for supportive legislation, but spreads awareness about Myositis and helps families that need financial support for treatment.

I am so proud of our contribution. I made a goal of $380 and we have met that by 230%!

If you would like to help us get to $1000, click here.

Thank you for helping me spread the word about Myositis and for your ongoing support,
Maren


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