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.

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.

MuSK+ MG

Well I learned a new word in conjunction with my MG today, and it could NOT be more fitting. I'm looking up Rituximab, which seems to be the logical next step for me in my MG treatment. It says that Rituximab (Rituxin) is used on refractory MG. So you should know by now, I'm looking up refractory in my Synonym Finder (the second best book every written, after the Bible)!

Here are my favorites: stubborn, uncontrollable, obstinate, bullheaded, willful, and headstrong.

Now, those of you who have known me for a while are probably peeing in your pants. If anyone in the world would have stubborn MG, it would be me. The irony is NOT lost.

Therefore, I have decided to apply my obstinance to finding the best treatment for me. I've read of 2 cases so far where MuSK+ MG has gone into complete remission using Rituximab. I'm also asking anyone I know who either has MuSK+ MG, or knows someone who might, what their treatments are, what works for them, what doesn't, etc.

Many that I've read about had been doing pheresis. However, whereas I was going every 3 weeks, these folks were going three TIMES a week. I cannot imagine that. Of course they would have ports, or fistulas, or some kind of veinous catheter, not use use their own veins every time like I had been.

It's quite irritating that so many articles are blocked unless you're a doctor, or belong to some medical association. Patients want information too for crying out loud!

So I will put my plea here as well: If you, or anyone you know, has MuSK+ MG, please leave a comment here, or contact me through my blog and I will get back to you. I would love to know what's working for you, if any of you have tried Rituximab (Rituxan), and if it worked. Thanks!