Update on Church and Pheresis

Church was very nice. The people were warm and welcoming. I was a bit bummed because the Pastor had been gone all week to a conference, so the former pastor gave the sermon. However, he was AWESOME. He did a first person message as Simon of Cyrene, the man who was forced to carry Christ's cross.

He warned of the inherent danger in doing such a thing, because, after reading from the Scripture, he said everything coming out of his mouth was just what HE thought Simon might have felt like. It was amazing though. He read of the account from the Gospel of Mark, who referenced Simon's children, Alexander and Rufus. Then he read passages from future NT books that mentioned Alexander and Rufus as members of the church, something that probably came about because of their father's encounter with Christ. It was really cool, and something I'd never heard done before. And something I'll never forget.

We are eager to go back Easter Sunday with Jacob and hear Pastor Dan preach and maybe meet some more people.

On the medical front: the treatment yesterday went FLAWLESSLY. There was a little hang up at the beginning because the nurse couldn't get a blood draw (and I would let her TOUCH any of the spots they use for pheresis...I can just see blowing a vein right before the procedure!). So we had to wait for a phlebotomist (I just love that word) to come up from the lab, and that took about 20 minutes. So by the time we finally got started with pheresis, it was a bit after 2. But then it was lickety split. Two needle pokes, perfect position, start the machine, ran perfectly, done in about 70 minutes. Right up there with a great run from the U of M. {and there was much rejoicing in the land!!}

So now we just pray my veins hold out for Wednesday and Friday, and then see how good I feel for how long before we do three more. It was SUCH an amazing thing, even with the delay today, which shouldn't happen in the future, how FANTASTIC it was to not have that hideous drive, and not take ALL stinkin' day to have this done. Beautiful.

New Church Today

Well, we are FINALLY getting to try a new church today. Not without a huge spiritual battle though...satan does NOT want me to go to this church. But he cannot win, because Greater is He that is in ME than he who is in the world!!!

I have had people praying and praying, and I was up rebuking his butt half the night. Jacob was up like 7 times. He hasn't done that in forever. It was crazy. I was like, I got your number, devil. I told him where to go, how to get there, and to do so in Jesus' name.

I woke up (after finally going back to sleep at like 5:30 AM) at 7, got up, headache, a bit queasy, but I made my coffee, put my "Jesus" music on, and sat down at the computer for 30 minutes, and already people are praying.

I will let you know how it is, because I'm expecting BIG things!

New Doc and Plans

So. I LOVE the new neuro. He's SO nice. He's willing to take on my case and we decided to keep Dr. Teener as my "head" neruo., but we are going to follow-up with Dr. Sullivan. He's warm, kind, professional, and seems to know what he's talking about. Go figure! Also, instead of seeing both an ENT and a pulmonologist, he feels confident that a pulmonologist at St. Mary's will be capable of handling both my trach and lung issues. (Hallelujah for that!) So that means everything except my shrink (who manages my anti-depressants, anxiety and sleeping meds) and PCP will be at St. Mary's. Whoo-to the Hoo! It's so much better having most of my medical stuff in one place.

THEN, Dr. Sullivan suggested having pheresis Monday, Wednesday and Friday, then off for four weeks. Then Monday, Wednesday, Friday, and off for four weeks, and so on. Typically, plasmapheresis is done over a 9 day period, 5 times. Most of the time it's done in-patient, but it can be done out-patient if you have a port, fistula or catheter. I'm pretty sure my veins will hold up for three treatments in one week if they have 4 weeks in between to recover. I'm excited. This doctor seems to get me, and thinks we may be able to tweak my CellCept should this not work. But I think it will.

That, and finally sleeping at night....it's all good!
Oh, and I AM going to check out a new church tomorrow. So if you could just say an extra prayer to bind the devil from giving me a migraine....thanks!

Post Number 600!!

WOW. I am kind of stunned. This is my 600th post. This blog has been such a blessing to me. In MORE than 600 ways, probably, but don't worry, I won't list 600 ANY-things!

But....this is what 600 legos look like.Mmmmm.....600 cupcakes. I'll bet that took forever!


600 chairs, anyone?

This dress is made from 600 recycled m&m peanut wrappers. How cool is that?


How about 600 cell phone charms?
I'm just super thankful and blessed and happy that I have a blog that has maintained 600 posts! I'm sure I've read 600 blogs, met 600 fascinating people, and my prayer is to impact 600 lives (and more!). That might take a while though!

I seriously want to thank everyone who reads this blog and encourages me to continue. It means so much to me that people are actually learning something through me about chronic illness, invisible illness, MG, whatever it may be. I'm just thrilled beyond words that people are listening.

Here's to 600 more!

NOW....how about 600 comments????

YAY

My blog is fixed! Photobucket had some serious issues, and my blog was all messed up. Never fear...I am BACK! Takes more than a technicality to shut me up! : )

So anyway. Today has been busy, busy, busy. I've been feeling so much better since my sister got home from the hospital, but she's still in a lot of pain, and running a fever and stuff. She went to the doctor today (the surgeon) and he gave her an antibiotic, which made ME feel better.

I have been doing a Bible study on suffering, and this week I decided it's the FIRST thing I'm going to do in the morning, and it has made SUCH a difference. This morning I was a liiiiitle grumpy, so I told Jacob Mommy needed to do her Bible study so I could get some patience. I NEVER would have made it through the day without it.

This study is really good. There are like 12 lessons, I think, and I just finished 4. I learn best when I write things out, so I've been taking notes on the lessons, and writing out the verses she references (unless it's a long passage, then I summarize).

Anyway. My poem has gotten some attention it seems! If any of you reading are going to the National Convention for MG, you may hear it read. I will not be there, but someone asked if they could take it to the Nat'l. Convention in May. I was like, OF COURSE!

Then a student in Biomedical Science in the UK asked me if I would be willing to do a diary type entry on her website she has to create for a school project. I am SO EXCITED!!! I went to college to teach children. I learned after I graduated that I liked teaching older kids (I loved middle school, I know, crazy!) Now I'm teaching in a whole different way. It's like, God really is giving me my heart's desire. Just in a TOTALLY different way than I could have expected.

I LOVE to write. That's what I want to do. And because of this illness, I am getting so many opportunities I never would have had. It just reminds me that GOD is in control. And thank goodness. I'm SO thrilled with what's coming down the pike, and it NEVER would have happened had I been healthy. I probably wouldn't have even pursued writing. And it is so important to me.

I have had a tough time the last few years, to be sure. However, things are looking up. Mostly, because I am!

The Sun Does Come Out!

It's been a crazy busy day. But a WONDERFUL crazy busy day. Before 10:00 this morning I did my Bible study, put away the dishes, took a shower, put 2 laundry baskets of clothes away, and sorted laundry.

WHAT???

It was amazing. Then I did my steam and breathing treatments, and Kerry and Karen came over. Oh, how I love Tuesdays!!!

Now Doug is coming home with a cow, (a real one) and then he will do his chores, and we're gonna go out and get a bag of corn for the cow...I think this one is named Chuck. Then grab something for supper.

So this post is short and sweet (ironically, just like me!!) but today was a GREAT day!

Life With MG

The thing that makes me the most crazy about this disease is its unpredictability. I never have liked change. I like structure. Order. Planning. In a perfect world everything would have straight lines, all the labels would line up (alphabetically of course) and everything would always be neat and tidy. I'm like the Type-A anal-retentive with OCD. (Which really should be CDO so it's in alphabetical order!!)

Anywho. Saturday and Sunday were wretched. Simply wretched. Today is SO much better. I attribute that to many things:

1. My sister is home from the hospital and in stable condition.
2. I started the day with Bible study.
3. I've been listening to more music.
4. PEOPLE HAVE BEEN PRAYING FOR ME
5. No migraine

I'm not sure why I let myself stay so discouraged yesterday. Normally I can shake it off. But today has been pretty good. Jacob has been SUCH a good boy today. I feel stronger, and I know it's because people are praying for me....and I can tell. I can't explain it to someone who doesn't believe in God other than to say you walk outside and feel the wind in your face. You can't SEE it, but you feel it so you know it's real. You see its effects all around you.

I feel people's prayers for me today as real as the wind in my face. And I'm so, so thankful. Yesterday I was pretty much like a pouty, sulky, spoiled child. Not that I don't have reason to feel badly some days...but I was just having a big ol pity party. I was definitely the guest of honor.

SO. Time to pick myself up, dust myself off, and thank God for putting people in my life that pray for me when I'm so down.

And for those of you praying: THANK YOU. You really don't know how much you mean to me. You are life-savers. Literally.