Tuesday, February 2, 2010

Bubbling Joy

I feel like I'm a study in contrasts. I get discouraged, worn down, emotionally spent, but underlying all that, God's granted such a joy in recent months.

I saw my primary care doctor yesterday. I took in a two-page poem detailing the daily experiences of living with XMRV - it was brutal stuff and very "depressing" to read, but it was just my way of processing the physical "junk" that goes along with living with chronic pain and illness. (I'm not brave enough to share it all here yet, but maybe someday.) She read through the poem and sat there shaking her head, then looked up at me and said, "All this, but you always seem so happy!"

It would have been a great opportunity to say something about the Lord (I wasn't thinking fast enough to realize the open invitation when it was right there), but I pray I will have many more chances to live out for her the reality that it is the Joy of the Lord that's my strength, even when my body fails me so.

The trip to Stanford was productive, if for no other reason than that I became a catalyst to connect Dr. Montoya (Stanford) and Dr. Mikovitz (Whittemore Peterson Institute) as Stanford looks toward replicating WPI's findings. I was in tremendous levels of pain the first few days home from the trip and spent the greater part of last week down in bed, so travel definately hit me harder than anticipated this go round.

As for a game plan, we plan to finish out my IVIG treatments (I just did #21 on Sunday and will have them every other week for just 3 more treatments - yeah!) and then take a step back and wait to see what research unfolds in coming months. I'll be back at Stanford mid-May for follow up bloodwork (two months after final IG infusion) then I hope to participate in clinical trials with WPI as soon as they are available. In the meantime we aren't going to move forward with the anti-viral treatments right now since they are not proven to be of effective against RETROviruses and I really am not up to six months of chemo-like side effects right now.

IVIG 21 was fairly uneventful. Got my IV started in just one stick (had taken 4 pokes two weeks prior and bruises from those still aren't fully healed yet)and other than one blood pressure scare, I slept through a good chunk of the afternoon and didn't even hive out until yesterday. Yesterday I was in a fair amount of pain but was surprisingly energetic for a post-infusion Monday. I was thinking maybe I wasn't going to have a hard crash and recovery like most weeks, then it all caught up with me about 7 last night and I've hardly been out of bed since (it's now 10 AM) with my limbs feeling like dead weights hanging off my body and my head cloudy and groggy.

I guess the only other news is that we are testing my thyroid now because I've gained about 35 pounds in the past year and the scales keep climbing even when I try my best to eat healthfully. My thyroid has been tested many times over the years and results always come back "normal" so I'm only slightly hopeful that this will provide answers, but we shall see. If not, I'm going to push to see if I can get back on metformin (glucophage) as my weight was well-maintained over the 10 years I took it for PCOS. I was taken off it a little over a year ago, after my hysterectomy, and that's when the weight began to build up.

Kids had great birthdays and Little J. seems fully recovered from his head-first bounce off his sister's bed. He'll do lab work the end of the week to be sure the bruised kidney is fully resolved, but I'm amazed at how quickly he seems to be back to full speed!


Hannah said...

I'll be praying for you! You've been such a help and comfort to me through your book, I'm so glad to know you have a blog I can follow. Hugs!

Lisa notes... said...

I found you after you left a comment on my blog. So sorry about the difficulties you've endured and continue to endure (and I join you on a few of those), but I'm very encouraged that you have joy anyway. Sometimes it's a real struggle for me to keep my joy in the Lord when I'd rather feel sorry for myself and complain, but I know that wouldn't bring any more happiness but only more misery.

Thanks for sharing some of your life stories here so we can all benefit. Praying that you'll get more opportunities to share with the medical folks about your source of joy. Your life itself is obviously speaking volumes already!


Dena Dyer said...

You might ask your doctor about testing not just overall thyroid levels but also separate levels, like T3, T4, and T5. My docs have done this and have put me on T3 plus synthyroid, which helped my energy immensely. And some docs are treating people on the low side of normal with thyroid meds, to good results. I pray they find some way to help. I know how discouraging weight struggles can be!