Tomorrow Is A Big Day

Tomorrow we head to Ann Arbor for the first time in 2 months. Haven't been able to say that in a long time! We're going to talk to Dr. Teener first (I have a ton of questions, well 20 to be exact) about the Rituxan treatment....I spent most of the day yesterday studying stuff about it...

I now know way more about cellular immunology than I ever thought I would...but it makes sense in an odd way.

Plasmapheresis takes antibodies out of my blood by removing the plasma and putting synthetic plasma from "normal" people, so the symptoms are alleviated. But as soon as the treatment is done, my body continues to produce antibodies.

Rituxan works on a cellular level, destroying B-cells (we have T-cells and B-cells in our immune system) therefore the possibility of medical remission is a very real one. If the B-cells are the ones that are out of control, and the Rituxan wipes them out, no more MG. Theoretically anyway.

I think the best thing I found out about this treatment is that is seems to work best on MY kind of MG. YAY! AND the incidence of PML is really, really low. In fact, I couldn't find any documented cases of PML in someone with MG who was treated with Rituximab (Rituxan).

What I am asking for specific prayer against other than the PML (Progressive multifocal leukoencephalopathy) is that Rituxan can make some crazy things happen because it works at the cellular level. One concern is the varicella zoster virus (chicken pox and shingles). Rituxan can like "reawaken" or whatever dead viruses in your body...so I could get shingles. But I won't. I'm just saying. Ya'll can pray against that.

I've also been exposed to TB (in 1999); I never GOT TB, and was treated for it anyway. But I do have a scar bubble in my lung that is encapsulating a TB germ....But again, TB seems to be one of the things Rituxan WON'T reawaken.

Anywho. I will keep you posted. Probably won't post tomorrow as I am having plasmapheresis as well. Going to see if that gives me any kind of pick-me-up. Thanks for your prayers!!

More Post-It's From God

Cherish Life

"It seems that it is madder never to abandon oneself, than often to be infatuated; better to be wounded, a captive, and a slave, than always to walk in armor."
Margaret Fuller

In about 20 minutes this morning I learned of the deaths of 2 young people under 25 with personal connections. One was a young man in Fennville that friends of mine know, and the other was a young man that is a cousin to a guy I went to school with for 13 years. On his facebook page, the day before his death, the cousin wrote: "24 has been the best year of my life, so far at least."

UPDATE: The family members of the young man in the above paragraph asked me to include his cause of death. It was a very sudden death, and he was only 24, so an autopsy was performed. It was determined that he had used heroin. A quote from the family: "He graduated Magna Cum Laude from the University of Michigan Engineering school. He was a smart kid who did a stupid thing. My Aunt and Uncle do not want this to ever happen to another parent that thinks this can never happen to them."

Remember this young man. Talk to your kids, no matter HOW old they are. I don't know if this young man used heroin a dozen times or just once. But once is all it takes. You can do drugs ONE TIME and die. It's that simple. If you need to scare your kids to not do drugs, then I say scare the crap out of them. If you are suspicious and confront them, and they get angry, let them get angry. At least they'll be alive. NEVER, EVER think, oh, that would never be my child.

Okay, now if that doesn't make you stop and think about what's important....You've got issues.

So my challenge to you (and myself!): LIVE. Don't worry about what people think. Don't let fear or anxiety or the "what-if's" stop you from pursuing your dreams.

Life is SHORT. Even for those of us who have days that feel like months...for those in chronic pain, who have chronic illness...this is a drop in the bucket compared to eternity. A DROP do you hear me? Get out there and DO. YOUR. THING. Don't let ANYONE tell you you CAN'T because you're too sick or too short or too tall or too thin or too fat or too poor or too anything.

And for the love of God Himself, tell people you love them. Cherish them. CHERISH them. Value your loved ones. Do you think either sets of these parents expected to be burying their children in the prime of their lives? No way. My sister died in a car wreck when I was 16. She was 18. That changed me. I started realizing what was important back then.

Then I got sick, and once again I was reminded of how very precious life is. Do you have a rift in a relationship? Fix it. Are you and your spouse grumping at each other all the time? Stop it. Are you sniping at your kids all the time? Shut your mouth. (And I'm preaching to the choir here, folks, so I'm right there with ya). Are you having a pity party? Snap out of it. There are people out there who have it a lot worse than I do, and I need to remember that.

So there it is.
"Nothing great in the world has been accomplished without passion." G.W.F. Hegel

Feeling Better....Emotionally Anyway

Not much has changed physically, but my emotional state has improved quite a bit. I have had some wonderful, amazing, outstanding, encouraging comments, e-mails, phone calls, and visits over just the last 2 days. I have had old friends leave comments that encouraged me, new friends come to visit and help out, (and play with Jacob! Oh, he had so much fun with his 4 year old friend!) new blogger friends sending me e-mails to encourage and support me, to pray for me....Old college friends doing the same....I feel so very blessed. To each and every one of you: THANK YOU.

Doug and I had a really good talk last night and I think he totally gets it now. I just laid it out, honestly, as plainly as I could, how difficult day to day life is. It was one of the hardest things I ever had to do...to admit to my husband that I couldn't even manage the 8 or so hours that he is gone while we are awake. That I couldn't make a schedule or set time frames for things. I just couldn't make it come together....that I couldn't take care of my dogs...that them barking is enough to put me over the edge.

He was amazing. So understanding. Not condescending at all...he didn't blow me off, or act like I was making a mountain out of a molehill. He even helped me make a schedule, and we'll be getting another large dog kennel so I can kennel BOTH big dogs instead of just one or the other.

I'm also going to Ann Arbor on Monday for a pheresis treatment, to see if that helps. I will be asking all my questions about Rituximab, and find out when I will be starting it.
Please continue praying...I can TELL that you are praying for me and it is helping me to clear the fog little by little.

At least I no longer feel alone. And that is the best feeling EVER.

Last Year At This Time

So I read Mama Kat's writing prompts this week, and one is perfect for what I'm feeling. The question is: What were you blogging about last year at this time? What has changed?

Well, last year on this very day I wrote about being almost home from our vacation from the pit of hell (to Florida.) A month long, truck driving, boat towing, freezing our butts off, dealing with a 3 year old on his first vacation, ghetto staying vacation from hell.

What has changed? What hasn't. My health is in the toilet. Jacob is more of a handful. I feel more and more like a failure as a wife and mother because of my health. I am holding it together, white-knuckling it every day, trying to decide which horrible treatment I'm going to choose for my MG (I've decided on Rituximab), praying I don't get the 90% fatal PML as a complication from said treatment. It's really a very UN-likely possibility, but just the fact that it's a possibility sucks.

Sometimes, well, MOST of the time to be completely honest, my life is totally overwhelming. How can I take care of my son when I can't take care of myself? How can I train him in righteousness when I don't have the energy to feed him? How can I be consistent in discipline when I can't remember the last 2 hours? How can I stay sane when I can't leave the house? How can I get my husband to understand what a big deal simply living every single stupid day is? Let alone worrying about bills and budgets and insurance and co-pays and prescriptions...I have like 21 medications. I have to keep that all straight. Not to mention more personal care-taking issues that are difficult for me...showering, shaving my legs, etc.

Then I read on facebook that Jeremy Camp wrote, "A fool vents all his feelings, but a wise man holds them back." Proverbs 29:11 NKJV

I guess it just put me over the edge. Holding it in would kill me. Literally. So I guess the Lord is just going to have to understand that I've having a tough time and need to vent. If that makes me a fool, then it makes me a fool. I've been called worse.

Happy Sunday

Decisions, Decisions.

So I'm researching treatments for refractory MuSK+ MG. Let me tell ya, there aren't a lot of options. The two most viable at this time seem to be Cytoxan and Rituximab. Both are chemotherapy drugs.

The Cytoxan has fewer side effects but they seem to be more prevalent. I would probably lose my hair, and could get bladder cancer.

The scariest thing about Rituximab is this horrible disease called PML which has a 90% fatality rate. I don't think it's a COMMON side effect, but it's a possibility.

So if ya'll want to say some prayers for wisdom, I sure would appreciate it.