Thursday, September 17, 2015

September Update

I can’t even remember what I’m supposed to write about here. To say that my mind is a little scattered these days is the understatement of the year. If I remember correctly, this is the blog where I tell you how I’m feeling, so I guess I’ll do that!

August came to an end with me feeling a little bit better, but definitely not "Super Maren" like the way I felt on the initial mega dose of prednisone as in my last update. Like many good things, it had to come to an end. I closed out August fully tapered off of prednisone and within 48 hours I was in a full-fledged flare again. Rashes, weakness, the works. UGH!

Thankfully my next rheumatologist appointment was only a matter of days away.
 9/5/15 Lab Results The labs show the liver, kidney, and blood cell counts are good.  The inflammation markers show the sedimentation rate to normal, the c-reactive protein is mildly elevated.  The Anti-nuclear antibody remains positive, the titer has dropped to a lower level. The complements are normal.  The CK and aldolase are normal. The LDH is mildly elevated, was normal last check. 

The inflammation is present in my bloodwork, and definitely present physically. What this means is that my dermatomyositis (DM) is not under control yet with the methotrexate (MTX) alone.
I am out of breath after walking 3 steps, but my lungs sound good. Dr. Grandits said that my DM is just more than likely weakening the muscles in my chest, but I shouldn't be too worried at this time. 

So, until I can get back to baseline, I’m back on a moderate dose of prednisone for about 2 months, as well as a healthy dose of azathioprine (aka Imuran) along with the MTX. We went with azathioprine over a higher does of MTX in hopes that I wouldn't lose any more hair (I'd like to hold that card until the end)!
So far, I am handling the medications pretty well. I am blown up like a balloon and feel like a beached whale, but am otherwise tolerating the drugs well. Thankfully I work from home and my dogs don’t care if my leggings are the only pants that I have that fit.

Brad and I did meet with a high risk pregnancy doctor, however I left that meeting feeling completely defeated and ready to give up and cried the entire way home. I was exhausted to begin with, the meeting took 2 hours and the only positive thing that we left with was knowing that my ovaries aren’t “old” – whatever the hell that means.

This whole time I’ve been thinking that adoption would be a very possible option for us, until the doctor told us that we may not even be approved to adopt with my disease. We were then referred BACK to the first high risk pregnancy clinic that we went to for the genetic counsel which was beyond frustrating. F*ckin’ A!

Whatever. The goal here is to get me healthy first, so that is what we’re focusing on. My personal goal is for one year from now, to be back to baseline and feeling better and stronger than I have in the past 5 years (oh and back to a normal weight). I think that I can do it! Now I just have to wait for my medication to kick in so that I can get moving and get started!

My immediate goal though, is just to get to live a little. The majority of my summer was spent at home on the couch, so I am definitely ready to be feeling better.

This past weekend I was able to join my best girlfriends for a few hours of bachelorette party games and fun at a hotel, I then joined the team that I volunteer with for an afternoon event outside. I was completely exhausted beyond belief by Sunday evening, but getting out and laughing and having fun was totally worth it to me.

Of all the medicine that I’m taking, I need to make sure I have the biggest does of the giggles – there’s just nothing like it, and no one makes me laugh harder than my girlfriends. In fact, I’m still laughing about this past weekend 5 days later. I can’t wait to load up on more smiles in a week when my dear friend ties the knot.

So in a nutshell, feeling pretty crappy on the outside, but happy on the inside. My heart is full. Grateful every single day.

As always, thank you for your love and support. I hope to have made more healing progress by my next post!