Saturday, April 4, 2009

One Foot in front of the Other

Two treatments down, three to go. Every Friday this month we will be heading back to Ann Arbor for another pheresis treatment.

Briefly, for those of you who don't know, what the heck is plasmapheresis?? I get two needles stuck in me, one in each arm. One needle (about the size of a fork tine) draws my blood out and into a machine. It spins (centrifuge) the plasma out of my blood, then new plasma is put in. The blood is then put back into the other arm (the return needle) with the new plasma in. Most of the time I don't have them turn the blood warmer on, because if I get too warm I itch now. Never used to. And I mean the painful kind of I-have-hives-all-over-and-if-I-don't-scratch-I'm-going-to-lose-what's-left-of-my-mind, itch.

So, I had that done Tuesday and Friday this week. Yesterday I also saw 2 different doctors. I saw my neurologist, who wants me to have 3 more treatments instead of two, and then see how I am. There is another option (in addition to everything else) called Rituxin, that is actually used for lymphoma and leukemia treatment. It's a kind of chemo, but my hair won't fall out. He said the side effects are rare (which means I would get them), and none of the patients he's used them on have had any. BUT, the side effects are bad. He said "You get strange illnesses." I was like, oh, please, may I have another??? I'm like, um, dare I ask? He said basically it can "awaken" things in your body that are dead or dormant. For example, every human being on the earth has the herpes virus (usually comes out in cold sores, or is dormant, and some have the other kind), and the Rituxin could bring that virus out in any manifestation. Or, since I have been exposed to Tuberculosis, I could get that. Or shingles, since I've had chicken pox. Or mumps, measles.... I was like, I think I'll pass!

He was basically telling me there ARE other options if this doesn't work. Out of all of the patients he has (and he is the head of the neruo-muscular clinic at the U of M), he only has 5 MuSK+ MG patients, one being me. One of his patients requires very little treatment (I was ready to spit nails at that) one they can't even get out of the hospital, and 3 are pretty much like me...can get very seriously ill and take a lot to control. OH, I am just so lucky!

The second doctor I saw was concerned about some blood results from last October, so wanted me to repeat them....found out that I am still anemic, and that my red blood cells are too small. Well glory be, how the heck do you fix that??? She was gone by the time the results came back, so I willbe talking to her next Friday when we go back. Oh, I just love being me!

So I'm trying to keep a stiff upper lip, but last night was just too much. Basically most of this month is going to stink, we're going to be on the road all the time, eating up gas money and adding mucho mileage to the car...I guess I'll just have to look at the positive side....lots of time alone with hubby, even though I sleep through most of it.

Keep me in your prayers folks. It has been a hard journey. I'm trying desperately to just put one foot in front of the other, as I'm not sure what else I can do. I've tried one day at a time, but I'm really, truly more at one hour at a time right now. I just need to keep that one foot in front of the other...keep going. It's tough. It's just plain crappy. I miss being a good Mommy to my baby boy. I know he misses the stronger me (strong being a very relative term here), because he's a little cranky, and just wants to cling when I'm here. I'm not really strong enough right now to even hold him much.

So we're had some tears around here lately, and expect to have some more. Just on a really rock road right now. I appreciate all of your love and support, and especially your prayers.


Leigh@intentslife said...

I'm sorry it's been so difficult for you lately.

Deuteronomy 33:26-27
26 "There is no one like the God of Jeshurun,
who rides on the heavens to help you
and on the clouds in his majesty.
27 The eternal God is your refuge,
and underneath are the everlasting arms.

Love and prayers,

Joanna said...

Screw the stiff upper lip. This is hard stuff, baby!

I remember what you said at the retreat about not losing hope. You have taken wave after wave of hardship lately. I remember when I was sick - not like yours, but still, it was all so overwhelming. Just trying to cope let alone survive was hard some days. When you're in the storm you just want it over with.

Praying that God gives you strength to get through this and the courage to keep on hoping. That and a new body, nice bank account, and everything your heart desires. We'll see which one gets answered first, m'kay? ;)