Weight for it, weight for it....

I've had that title in my head for a week! I have no idea what I'm writing about, but because I've finally begun to add weight back on, the line keeps repeating in my noggin'..."weight for it, weight for it."

I hopped on the scale last week just to confirm I was still *not* putting weight back on. Now, for those who don't know me personally, this last sentence was full of sarcasm, and I really have been trying to add weight, and eating anything I can. When the time comes, and my swallow isn't working great, the weight will start to fall off again. SO I am excited to see that my body is finally catching back up. Little bit, by little bit...and I'll take it, a pound at a time.

Since posting on the 13th, we've traveled to Denver for a dear friends pre-wedding festivities, we are working with other MGers to be ready for a month long art show in Austin focused on symptoms of MG, and I'm in transitioning job roles within my company. All great stuff, and consuming. Thanks to plenty of rest, and simple routines, my symptoms have remained minimal. I don't want to credit the meds...yet. Body weakness still greets me each day, but will power over comes. My speech will weaken when I speak for long periods of time, so I've actually been working on *not* talking as much. Who knew this was even possible?? ;) ...I'm learning patience...yep...weight for it..weight for it....

Cloudy day? No!

Sunny Day, Sweepin' the clooooouds away. On my way to where the air is sweet...


Remember that song? I had it stuck in my head yesterday, and find that I'm still humming it today. Day 7 of feeling good! Better anyway... I believe one of two things are taking place - 1) I'm in a 3-4 week cycle of 1 week good, 2 weeks iffy, and 1 week bad, or 2) I'm finally on the mend and catching back up, post Paris trip. Who knows..the adventure does not end!

Lots of inquiries about the medicine, and if we're noticing any benefits yet. I will say 'no' not yet, but again, we do not expect anything, for 3-4 months. I do notice upset belly more regularly though :) ...I know its in my system...

I'm feeling good, have a huge appetite, and my eyes are calming down! Its awesome to be able to breathe with ease again, and to sleep through the night after a good month or two of getting up 2-3 times a night. My body continues to fight a little bit, but its tolerable.

So today is a sunny day, and the clouds are definitely being swept away. We'll savor every moment and take it for what it is; the "right here, right now". Savor yours too!

Day 3, post Oysters

Friday night we enjoyed a few oysters on the half shell (i looooove them) and prepared to begin the immune suppressant dance again. Saturday morning, the regiment began. Yes, the new drug is underway, and I take a tiny little capsule 3x per day, spaced out to roughly 7-8 hrs in between. This is to help prevent overwhelming the kidneys. Don't want to do that!

The boring part now, is waiting the 3-4 months that we expect are needed, before the drug ramps up in my body. When speaking to Mom on Mother's day, she asked me how I was feeling on the drugs, and my response was that after 3 pills, I've only lost my left ear, the right is still hanging on. JUST joking Mom, and thanks for laughing with us. All is fine, my body realizes there is new medication and is adjusting as expected. Now, we avoid those who are sick and germy, raw fish, grapefruit, etc. ..and we wait...

In the mean time, pheresis continues at 3x week. Symptoms are SO much better today than they were last week. Its awesome! They are not clearing entirely, but I can eat, and honestly that's all I care about. Vision remains double in my right eye, but its trying to straighten out...trying really hard.

That's all for now, just wanted to pop in and report on the new medication. ..and now we wait..

Ready-Set-Go!

The past week has been a doosie! On Thursday of last week, after visiting Dr. Wolfe in Dallas, the double vision was starting. The difficulty chewing/swallowing/speaking caught up quickly. Today, the 1-week cycle is wrapping up. My vision is trying to be single, the swall/chew/speak is almost clear, and breathing is close to clear. I say 1-week cycle, but who knows why the symptoms have been so strong lately. Could it be that we came off cellcept, and maybe it was making a difference? Could it be that I keep pushing the limits too far, when times are good? Could it be related to hormones? Who knows..but what better time to start a new drug and really measure results, right?! :)

Today we had a follow up visit with Dr. Horvit here in Austin. We reviewed the Dallas visit and next steps. He's in agreement with everything and we'll get started on the new med (Prograf) tomorrow. This is another immune suppressant, so I'll have to avoid grapefruits, raw fish, sick people, etc. In celebration of this, we're going to have oysters tomorrow night...just before the start.

It may take 3-4 months, but here's hoping and praying that by the end of the summer, we'll start to see a decrease in the need for pheresis treatments. Keep checking in...we'll keep ya posted!
xo
Rach