Wednesday, January 13, 2016

The Waiting Game

Here I sit, 4 weeks out from my last Rituxan infusion and each day is a little different than the one before.

Last week, I had daily “Feats of Strength” occurrences. For example, I was suddenly able to lift a small grocery bag onto the counter from a fully extended arm. This is something that I haven’t been able to do in about a year. This was so exciting! These Feats of Strength though, were followed by the overwhelming need to lay down and take a nap. Very strange, but I’ll take it!

2nd Rituxan Infusion in the books!
And yes, I did just wake up here!
This week, I’m back to feeling pretty wiped out and my upper arm and thigh muscles have that exhausted “dermatomyositis” feeling again, making it hard to get things accomplished. I have been however, getting bursts of “run around and get things done around the house” moments, which is very much the “old me”. I’ll take that, too!

I met with my rheumatologist, Dr. Grandits last week for a check-up. She said that while many Rituxan infusion patients will begin to feel improvements within the first 2-8 weeks, as the infusion center explained, that it isn’t uncommon for infusion recipients to continue to make improvements for up to 5 months! We talked about the changes that I noticed being signs that something is happening, that it sounds like it’s in the right direction and that the next 6 months may be filled with lots of little improvements that add up to me hopefully starting to feel a lot better. I told her that any “little” improvement is huge progress to me, so not to worry about me being disappointed. My spirits are very high and I’m feeling very optimistic.

Dr. Grandits also told me, by her very precise “push-on-the-hands, squeeze-the-fingers, sit-up-in-the-chair” strength test that she can tell that I’m getting stronger! Huzzah!

As for labs… they don’t always tell us too much, except for when they say that something is really wrong. This round of labs were pretty great though, especially since I have had some major drug changes in my system:

1/7/16 Labs 
Labs look good, no toxicity from taking the medications. Normal liver, kidney, and blood cell counts.
The muscle enzymes show a normal CK, normal aldolase, the LDH is up slightly. The blood sugar is also up slightly, this should drop with the drop in weight.
The sedimentation rate and c-reactive protein are normal.

This brings me to the other conversation that I had with Dr. Grandits, my weight. Wah-waaah.
As I had mentioned in previous posts (I think), I gained a LOT of weight when I was on Prednisone. While this isn’t uncommon, it doesn’t change the fact that it isn’t good. My blood sugar also went up with my weight, and now both my blood sugar and BMI are in unhealthy ranges.

If not having any pants that fit isn’t motivation enough to get in shape, putting yourself at risk for diabetes sure as hell better be.
I found a really great e-book and Instagram-based program focused on realistic, clean eating and exercise that I started on January 4th called the Fit Girls Guide. I’ve really been enjoying it! Even though I’m still not strong enough to do a lot of the exercises, the program has a “just do the best that YOU can” motto that I love, and the other gals are incredibly supportive, too.

As Dr. Grandits mentioned, my blood sugar will likely come down with my weight, which is great. I’m already excited for my next check-up for labs in March. I’m also really excited about wearing pants again… since leggings and sweats don’t always fly in public, and I can only wear my “Hey, I just came from the gym” look so often without people starting to wonder if I work out so much, why I don’t look like a contestant from the next American Ninja Warrior.

I should mention that I am trying to be kind to myself about the weight thing, but I do think that it will be easier for me to get stronger be active with a little less weight to tote around. It's hard enough to be active as is with dermatomyositis, and the extra 30+ pounds doesn't help! 

So, that is about it for now! I hope that 2016 is off to a great start for you all, and as always, thank you so much for your love and support! 



  1. So happy to hear improvements are happening and you're staying motivated and strong. I'm motivated by you to kick butt with fit girl in 2016:) xoxo

    1. Thank you so much, Sarah! I'm so lucky to have such an awesome friend in you! XO

  2. Hugs from the lakeside. You are in prayers. What a positive trooper you are.

    1. Thank you, Bernice! I'm so lucky to have such a special neighbor :-)

  3. Just came across your journal. I'm happy things are slowly improving and you seem very positive which is tough having this disease. We've all heard he weight thing before. I gained a lot on prednisone as well but little changes help, don't push yourself because it will just make it worse. Good luck!

    1. Thank you for your kind note, Hannah!
      While I wouldn't wish any of this stuff on anyone, it's always nice to connect with others who have had some of the same experiences.
      Wishing you all the best in your journey!

  4. Hey ! I would like get in touch with you. I have this lesions or lumps in my knuckles that I think could be grotton's ! Can you please give me your email account to chat! Mine is, feel free to email me !

    1. Hi Noelia - I recommend seeing a Dermatologist to have them take a biopsy of the area on your knuckles. That is how I was able to confirm DM from my Gottron's Papules.