Friday, August 5, 2016

Great news!

If you haven’t heard it from me already, I was finally approved for my next round of Rituxan infusions! In fact, I have been approved through the next year, so that could potentially be two more rounds!

I just confirmed my appointment for Monday morning, the 8th. I’ll then have the second infusion on Monday, the 22nd.

While the anxiety has just started to set in, I am much more excited about the infusion this time around, and less scared.
My first infusion, I was excited yes, but mostly s#!tting in my pants. Once I didn’t die within 24 hours, I started to feel a little better about it ;-)

My most recent lab work showed improvement, however not yet totally in the clear.
From Dr. Grandits:
The labs show normal kidney and liver functions.
The blood cell counts are improving, improving red count and Hemoglobin improved.
The white count is lowish but stable and the size of the red cell is large (MCV) but again stable.
The platelets are normal in number.
Ok to continue your medications.

I have been struggling with my Dermatomyositis rashes, but keep plugging away with the topical medication that I have from my Dermatologist.
I’m only about halfway into the adjustment period for Plaquenil (aka Hydroxychloroquine), so it’s unknown if that is on board or not yet. I keep watching my skin for signs of improvement or at least a steady change, but nothing quite yet.

The rashes have been annoying, but whatever – I’m over it! I’m done wasting energy on them, or worrying about what they look like. If someone wants to think that I have some contagious skin disease and run away from me, then good for them.

DM Rash on Left Shoulder

Warning: No Makeup. LOL
DM Rash on Shoulders, Chest, Face and Scalp. Booo.

DM Rash on Upper Back and Shoulders

DM Rash on Right Shoulder/Bicep

I am happy to report that I have also been feeling awesome! I’m getting stronger every day and building my energy level so that I can do more without getting wiped out the following day (or two, or three)!
I am so lucky that my job allows me to save my energy for activities that I want to do, and also that I have breaks when I need them to get up and move around, or sit down and take a breather! 

I still struggle with little things here and there, but I am leaps and bounds from where I was just one year ago and couldn’t be more proud.
Example: First thing in the morning when I let the pups outside, it’s still a little hard for me to walk back up the stairs and it takes a little while for my muscles to get fired up and moving for the day. My thighs are also still the first thing to fatigue when I exercise. This is a million times better than last year when I could hardly walk up the stairs at all, and needed my husband’s help to move around. So, no complaints here!

So, Monday is the day! I have a few days off of work for each infusion, in case I’m groggy/foggy/not feeling awesome afterwards.
I cannot tell you how absolutely thrilled and grateful I am to receive this life-changing medication again. To know that I will continue to feel better and to improve makes me jump for joy. It feels so great to be able to walk around, be active and enjoy my life off of the couch! I am just over the moon.

I plan to have more great things to report! This weekend will be a fun one, so hopefully it will keep my mind off of any nerves and help me stay focused on the prize and keeping positive.

Thank you for your love and support!


  1. Wow Maren! You are such a fighter!!! I admire your positivity and strength. Sending you all my love, and healing prayers! Love u! Drey

    1. Thank you so much, Drey! It helps to keep positive when I have so many great cheerleaders! Love you back! XO