Thursday, June 18, 2009

Hi-Ho, Hi-Ho, It's Off To Ann Arbor I Go.....

Well, poop.

Things just aren't getting better! So. I will be going to Ann Arbor tomorrow, as scheduled, and then next week Tuesday and Friday, and the following Monday (19th, 23rd, 26th, and 29th). If I were an inpatient, they would do a treatment every other day for 10 days. This will be four in 11 days, and for living 150 mils away, not so bad. It's going to be a long couple of weeks, lots of driving, but thank GOD for 2 sets of grandparents who are not only willing, but also LOVE to take care of Jacob. Still, it's financially a booger, with gas being what it is...it will probably be between $160-$200 for 4 trips. Add to that the info from the dentist yesterday, that I need TWO crowns (after not having a cavity for 10+ years!) of which OUR portion (after maxing out our insurance for the year) is $565.00!!! Yeah, I can just poo out $1000.00. No biggie. WHATEVER.

But I'm not stressed. Nope. Not at all.....(does anyone else hear those voices?!?!?!?) ; ) Sometimes I almost think being committed would be easier...ALMOST...

I know most of why the MG is flaring...due to stress. It is so hard to be a good mom when you're healthy. Dealing with what I do, then raising an almost-3-year-oldI-can-do-it-myself-but-it-will-be-a-stressful-nightmare-for-Mommy-to-clean, pick-up, live through, whatever. Plus I would LIKE to have a life...like going to Bible study, and oh yah...what's that other thing called?? Church! That's it!

I know, I know...I'm being a wee bit sarcastic....Joanna must be rubbing off on me! {wink wink}

I'm having symptoms I haven't had in a long time....daily double vision...trouble breathing and swallowing my pills. I haven't had that since it went away finally after I had Jacob. Makes me a LITTLE nervous. My only options for additional treatment is more pheresis...my veins have to hold out, or I will have to get a fistula (which I DO NOT want)....they are painful and prone it infection. They like to do that only if the veins don't hold up. I'm on the maximum dose of Cellcept before the damage to my liver and kidneys starts to outweigh the benefits of the medication. Because the MG is flaring so badly and I'm so stressed, my fibromyalgia is worse, and every little spot Jacob touches (let along digs those tiny little elbows in) is excruciating. Seriously. Unless you experience it, it's hard to explain.

And yet the tune going through my head right now is, "I will sing of the mercies of the Lord forever, I will sing....I will sing....With my mouth will I make known, His faithfulness, His faithfulness, with my mouth, will I make known, His faithfulness to all generations." Hmmmm, now THAT'S a God thing, cuz that's NOT what my natural mind would be thinking!! Maybe I'm screaming for mercy and that's how the Holy Spirit is allowing it to come out! ; )

SO...please keep me in your prayers over these next few weeks, as well as Jacob, Doug and our parents....it's a lot of coming and going, shuffling Jacob, crazy meals, eating out, etc. Let's just say Subway will be seeing us a lot the next 2 weeks!

I'm trying very hard to stay positive and be encouraged, but man, is it tough!!

1 comment:

Young Wife said...

I'm sorry you're having to go through all this. The song in my head most days is "The joy of the Lo-o-rd is my strength!" Sometimes, when insurance isn't wanting to cover my TMJ Disorder claims, I feel like they ought to know that they'd get off cheaper just paying the claim. The stress of trying to pay for it by yourself causes all these other side effects, and not just for you, but your spouse, too! Prayers are going up!