You want me to do WHAT with my blood!?!

So Poppy, father of my father, hug-giver since birth, and physician since long before that, sent me an article in the mail out of the Memphis Commercial Appeal newspaper which discussed a practice that some people are using to treat MS.

Bleeding.

Well, not exactly bleeding. More like filtering the blood and then putting it back in…

I’m not kidding here folks. The practice is actually called Plasma Exchange.

Here’s the lowdown skinny on it according to the Mayo Clinic:

This procedure involves removing some blood and mechanically separating the blood cells from the fluid (plasma). Blood cells then are mixed with a replacement solution, typically albumin or a synthetic fluid with properties like plasma. The solution with the blood is then returned to the body.

It is not clear why plasma exchange works. Replacing plasma may dilute the activity of the destructive factors in the immune system.

This treatment is only for people with sudden, severe attacks of MS-related disability who don’t respond to high doses of steroid treatment. The treatment is most helpful for people with a mild pre-existing disability before the attack. Plasma exchange has no proven benefit beyond three months from the onset of neurologic symptoms.

Now, if that were the long and the short of it, I could very simply say to Poppy, “Thanks for the article, but that’s clearly not for me, since I do respond to steroids.” But it’s not.

Of course, it’s not, when you get headlines like this all over the country, thanks to Reuters, who in late April of this year prints an article with this title:
Research Shows Plasma Exchange Helps Multiple Sclerosis Patients

True, the first sentence says,

“Researchers at Aurora St. Luke’s Medical Center in Milwaukee report that plasma exchange therapy or PLEX dramatically improves the health of multiple sclerosis patients who fail to respond to conventional therapies.”

But all that people who LOVE people who have MS see is that headline — that promise they have been looking for… the promise of hope. They heart starts screaming “OH MY GOSH, OH MY GOSH, THERE IS SOMETHING OUT THERE THAT WILL MAKE MY DAUGHTER/ SON/ FRIEND/ LOVER/ WIFE/ MOTHER/ FATHER FEEL BETTER!!! I HAVE TO TELL THEM NOW! I CAN SAVE THEM FROM PAIN AND SUFFERING!”

And it isn’t true.

Well, MAYBE it’s true, but it PROBABLY isn’t. See, it’s only good for those of us who DON’T respond to steroids… for those of us who are NOT seeing any help from Copaxone, Betaseron, Rebif, or Avonex. That means it’s only good for MAYBE 10% of us… tops.

But it gets worse, y’all.

You’re excited, and you want to share it with your loved one. Your heart is jumping up and down with excitement! But this process — taking ALL OF THE BLOOD OUT OF OUR BODY, FILTERING IT, ADDING SYNTHETIC PLASMA, AND THEN JUICIN’ US BACK UP — it doesn’t cure MS. And not only does it not CURE it, you have to keep doing it… every 3-6 months… and it’s almost universally NOT covered by insurance because it’s NOT 100% accepted within the MS community as safe or proper for all MS patients! Did I mention it’s about $1000 a pop? Yeah. That.

Needless to say, Plasma Exchange is nowhere in my immediate future. I put it BEFORE the total annihilation of my immune system through Chemotherapy, and AFTER, well, pretty much everything else.

This is one of my BIGGEST pet peeves with sensationalist media: Any step forward is headlined as if it were a cure.

I’m so tired of false hope. I’m so tired of having to be the one to dash the hopes of my loved ones by explaining how something is a treatment and not a cure, or how something is in trials and isn’t ready to go to market yet… or having to explain to people who are uneducated about the disease that NO, it has NOT been cured yet… the news story headline was sensationalistic and not actual. It’s enough to have the disease and to be an educator, but to see the lights go out of someone’s eyes when they are so happy and feel as if they’ve brought you the best gift in the world with the news of health… that one’s tough. Being kind to them and not displacing your anger that the media has once again gotten a practical joke over on you is a skill that’s good to pick up fast.

So, I’ve taken to looking at “Cures” and “Treatments” for MS the same way I look at diets and exercise programs. Until something’s been successful for several other people for enough years that doctors agree that it’s a really good thing, I think it’s a fad. 🙂

You hear that, Poppy? I may not be 93, but I’ll let those kids try their new, hip mumbo jumbo. 🙂 This girl’s stickin’ with the classics til her Neurologists suggest otherwise. 🙂

Absolutely Shameless Self Promotion

Well, if my own boyfriend, who LIVES with me, could forget, odds are anyone could!

I wanted to take a moment to remind everyone that I am an affiliate with Amazon.com!

PLEASE take a moment to click through my link before you make whatever purchases you would normally make with them. I’m not trying to tell you that you OUGHT to shop with them — just that if you DO normally shop with them, AND you use my link, you not only get the good feeling of getting exactly what you wanted from the store you wanted to shop from, but you also get to feel good about knowing that you’ve helped a friend who is very in need!

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Thanks! 🙂

badtoday

seizures are really bad today. Don’t know how long they’ve been lasting or what time it is when I wake up. Thought it was around noon. Turns out it’s 4 pm. Feel like I’m losing my mind. Kitten woke me up just now from confusion by jumping on Adam’s laptop and turning on a song that brought me back to the appropriate time period.

I hate jumping back in time.

I hate the feeling of being lost in my own home, in my own skin.

Sometimes, I’m lucky. I get stuck. The seizure hits me hard enough that I’m tired. I’m so tired that I don’t want to move, or I still can’t move because it hasn’t let go of my body. Sometimes, I just give in to that and usually by the time I wake up, Adam’s turned on the Doctor Who or Entourage theme song.

I don’t know why that works, but it does. My mind is so strange the way it works, but I remember the moment I first heard music that I’ve memorized. If I hear the Entourage theme music and I’m in a mindframe that is earlier in time – hearing that music RIPS me right back from where I was in consciousness into “today’s” me… or at least the me that has seen Entourage. The rest comes back fast enough. The important stuff is there: I’m the right age. I know I have MS and a seizure disorder. I know where I am. I know who Adam is. I know I’m safe.

Adam jokes sometimes about how I should write Doctor Who and Jane’s Addiction to let them both know how their music’s positively affected my life, since that’s the sort of thing that I would like to know about as a musician. I think I may. Who knows. 🙂

There are times where I think that if I ever wrote about any of this, I’d get sent to an insane asylum, but then I realized that if I write it on the internet, it’s more tame than most things. heh.

I’d say I’m not crazy, but I know I’m not in control of any of this. Not in control of the seizures. Not in control of where in time I wake up… whether I’m suddenly 4 years old, 10 years old, 20, or 28. And it still amazes me that I’m that young. I could swear I’m in my 80s.

I called Dr. Sutherling’s office and told them that I’m having an increase in the number of seizures that I’m having over the last couple of days. I’m waiting for them to call back.

These consciousness knocking trips are what make me question my ability to live a good life.

I worry that I’ll lose my sanity. I worry that I’ll lose the love of my life. I worry that I’ll forget the most important or beautiful things…

But oddly when I’m “transported” – I remember, with exacting detail, so much I thought I had forgotten. It would even be as if I were there. I remember the feel of the rock that the fireplace was made of…the one at my parent’s first house. I remember the feel of the carpet where it met the hearth and how I always made it more crumbly and it made Mom crazy… It’s funny but I almost always start repeating the address to myself. When my inner child gets scared, apparently, it’s very important to give your address, phone number, and where they can find your parents and grandparents… At least she’s trying to stay safe! 🙂 And Adam almost always gets music on faster than I get worried, if I’m in that frame of mind.

*sigh*

I feel so out of control. I wish I could just accept it.