What the heck. I've already posted twice this morning, why not make it a hat trick, right? That should settle the natives who have restlessly been awaiting some new smoke signals from my blog.
Anyhoo, I was hanging out on Facebook yesterday trying to wrap my 49 year old brain around the site that was obviously created for the under 30 crowd (and being unsuccessful at figuring anything out, I might add) when I got a message from a friend. She's also an MSer and in the Fingolimod, FTY720, a.k.a. Gilenia trial and she knows how concerned I am about my medicinal future and whether or not I will be begging for someone to help me pay for the stuff month by month after the party (clinical trials are FUN!) is over.
I asked if I could quote her and she said I could. Here's what she had to say:
"I just had my 18 month check up yesterday, and was told by one of the trial coordinators that the head of the study from our location was/is working on our behalf.
At a conference recently, the neuro was advocating to Novartis that they should do something to take care of us guinea pigs when the drug is approved to the FDA and released to the market. He didn't think it is right if we have put in the time, just to possibly be cut off of our wonder drug."
So, to Novartis, if you are listening, PLEASE PLEASE (picture me on my knees here) have mercy on those of us who have laid our bodies on your examining tables and offered ourselves up for your poking and prodding, needle sticking and eye exams and PFTs and MRIs and CTs and all the other abc tests...
We have come to you as a last resort, some of us. We have no health insurance and the only way we could get treatment for our disease and ease some of the suffering and slow the progression was to gamble with our very lives and let you use us as guinea pigs in order to advance treatment for all who suffer from MS. We have had to deal with the news that at least 2 fellow lab rats gave their very lives to this clinical trial. For a hypochondriac to continue and forge ahead despite this news was the hardest thing I have ever had to do.
Novartis, your company has a reputation for compassion, and I plead with you to show that compassion when this trial is over. Give those of us who cannot afford to buy this miracle drug (of which I am the #1 cheerleader) a chance to stay on the medicine and continue leading lives that are once again worth living.
I am terrified that you will snatch it away and I will be left to once again have my MS run rampant and destroy my body. Please, please don't take it away.
From all of us who have helped you make Gilenia a success, we're just asking for a little compassion. Not too much to ask, is it?
Thursday, April 8, 2010
Inspirations from Michael J. Fox
I try to have a positive point of view and do the glass half full thing, but nobody can be upbeat and happy ALL the time. If they are, you just want to grab them by the throat and shake them until they feel as lousy as you, thus brightening your own day.
Anyhow, not to say I've been down or anything... just a little stressed out. My entire family had the flu that dragged on for 2 weeks, followed immediately by my youngest going back to school for a day or two just long enough to catch Strep Throat. He topped it off with Scarlet Fever. So for nearly 3 weeks I have been taking care of someone who was ill, including myself for a 3 day stretch over our first nice weekend of the season. All I could do was lay around aching and feverish while looking at what a beautiful sunny day it was through the window.
So I have been feeling stressed and worn out lately. Wondering if that's what's bringing on the gut craps (stress) and just not feeling very cheerful or finding any fun in my life lately. Then last night I sat down and grabbed the latest Reader's Digest with Michael J. Fox's smiling face on the cover. I flipped through to find his story.
As everyone knows by now, unless you have been buried in a time capsule and are still shaking off the dirt, Michael J. Fox has been diagnosed with young onset Parkinson's Disease. He's had it rough, to say the least. And being one who has another chronic, debilitating, incurable disease of the nervous system, I have always feel a camaraderie with him and looked up to him for how he soldiered on through life with a smile on his face.
The magazine included an excerpt from his new book titled "A Funny Thing Happened On The Way To The Future". In the excerpt I found a very poignant point he made that was so very zen-like that it made me stop and think. It reads...
"So let me make this suggestion. Don't spend a lot of time imagining the worse-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice."
and a quote from the interview itself...
"...if I stand apart from the moment and say 'In this moment, I am struggling and I can't do what I want to do,' not only have I not had a good moment, I've missed the moment completely, just by standing outside it and judging it."
That man would make an incredible friend. He is so positive and he "gets" it. He knows what to appreciate and why you should.
So many able bodied people go through life complaining about this or that, never realizing the gift they have of just being healthy. I know. I was one of those people. I remember lamenting my boring life.
Now, with the help of my medication, I lavish in boring where the drama of MS is gone from my mind.
I thought it worth blogging both of those quotes as everyone needs some positive perspective. In my eyes, Michael J. Fox is a heckuva role model. Thanks, Michael, for spreading your positive message like sunshine. :D
Anyhow, not to say I've been down or anything... just a little stressed out. My entire family had the flu that dragged on for 2 weeks, followed immediately by my youngest going back to school for a day or two just long enough to catch Strep Throat. He topped it off with Scarlet Fever. So for nearly 3 weeks I have been taking care of someone who was ill, including myself for a 3 day stretch over our first nice weekend of the season. All I could do was lay around aching and feverish while looking at what a beautiful sunny day it was through the window.
So I have been feeling stressed and worn out lately. Wondering if that's what's bringing on the gut craps (stress) and just not feeling very cheerful or finding any fun in my life lately. Then last night I sat down and grabbed the latest Reader's Digest with Michael J. Fox's smiling face on the cover. I flipped through to find his story.
As everyone knows by now, unless you have been buried in a time capsule and are still shaking off the dirt, Michael J. Fox has been diagnosed with young onset Parkinson's Disease. He's had it rough, to say the least. And being one who has another chronic, debilitating, incurable disease of the nervous system, I have always feel a camaraderie with him and looked up to him for how he soldiered on through life with a smile on his face.
The magazine included an excerpt from his new book titled "A Funny Thing Happened On The Way To The Future". In the excerpt I found a very poignant point he made that was so very zen-like that it made me stop and think. It reads...
"So let me make this suggestion. Don't spend a lot of time imagining the worse-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice."
and a quote from the interview itself...
"...if I stand apart from the moment and say 'In this moment, I am struggling and I can't do what I want to do,' not only have I not had a good moment, I've missed the moment completely, just by standing outside it and judging it."
That man would make an incredible friend. He is so positive and he "gets" it. He knows what to appreciate and why you should.
So many able bodied people go through life complaining about this or that, never realizing the gift they have of just being healthy. I know. I was one of those people. I remember lamenting my boring life.
Now, with the help of my medication, I lavish in boring where the drama of MS is gone from my mind.
I thought it worth blogging both of those quotes as everyone needs some positive perspective. In my eyes, Michael J. Fox is a heckuva role model. Thanks, Michael, for spreading your positive message like sunshine. :D
Elevated Liver Enzymes and Gut Wrenching Charlie Horses
I had the blood draw a week ago today and the phone call with the results came on Monday. At least they hadn't gone UP, but they didn't go down. They were "about the same".
My clinical trial nurse says the neuro is on vacation until next week so she's going to get with me then, after he's had a chance to review the data, and let me know what the course of action will be. Naturally, I wanted to know if I'd have to get off the Gilenia (a.k.a. FTY720, a.k.a. Fingolimod). She said the numbers weren't so high as to warrant that, but we may have to keep tabs on it more often than the every-3-months check-ups we'd been doing.
From a hypochondriac's point of view, I would really like to know what a liver that is excreting high levels of enzymes is supposed to feel like. First, I need to google where my liver IS so I can being imagining pains in the appropriate spot.
I kid you not, though, I have been having trouble for the last few days with a spot in my upper right abdomen, just beneath my ribcage. I've had this pain before and everyone thought I was nuts when I described it. It feels EXACTLY like a charlie horse in my guts. On a scale of 1-10, the pain, when it hits, is oh.... somewhere around 100. "Owie! Owie! Owie!" is all I can say as I writhe around trying to get in a position that will make the agony stop. It's worse than labor pains, that's no lie.
It only lasts for a few minutes, but I am always alarmed and sure I am dying.
Last time I had the charlie horse was Christmas day. I had to get out of the kitchen and go lay down and roll around biting my lip trying not to scream.
I contributed it to wearing pants that were too tight which created the dreaded Muffin Top Effect, and then trying to bend over. Certainly one's guts cannot survive that kind of punishment without some objection. I have never in my life (before now) been overweight to any degree, so since I gained 20lbs after quitting smoking, I have had to learn all about the discomforts of carrying around 2 10lb sacks of potatoes I can't set down.
Before gaining the weight I had never had this weird gut cramp, so I am motivated to lose the extra baggage in hopes of never experiencing it again.
Besides the weight issue, I thought perhaps it could have something to do with the nerves controlling my guts. Kind of like spasticity of the intestines or something. Once you've had MS for a decade plus, you catch yourself blaming it for everything from an eye twitch to not being able to find your keys.
Then, in casual conversation the other day, I mention the gut cramp to a friend of mine. Turns out she (who does NOT have MS... or maybe she does? hmmm) has the same charlie horse thing happen to her! We started to compare notes.
We are both lactose intolerant but she has actually brought up the phenomenon with her doctor and was told it is related to the IBS she has also been diagnosed with. I have never had an actual diagnosis of IBS but naturally I googled it and now display all the classic symptoms. I guess maybe I have it. Who knows? But I'm going to keep wearing my comfy sweat pants and let it all hang out until I can get in to see a doctor to find out what's going on.
My clinical trial nurse says the neuro is on vacation until next week so she's going to get with me then, after he's had a chance to review the data, and let me know what the course of action will be. Naturally, I wanted to know if I'd have to get off the Gilenia (a.k.a. FTY720, a.k.a. Fingolimod). She said the numbers weren't so high as to warrant that, but we may have to keep tabs on it more often than the every-3-months check-ups we'd been doing.
From a hypochondriac's point of view, I would really like to know what a liver that is excreting high levels of enzymes is supposed to feel like. First, I need to google where my liver IS so I can being imagining pains in the appropriate spot.
I kid you not, though, I have been having trouble for the last few days with a spot in my upper right abdomen, just beneath my ribcage. I've had this pain before and everyone thought I was nuts when I described it. It feels EXACTLY like a charlie horse in my guts. On a scale of 1-10, the pain, when it hits, is oh.... somewhere around 100. "Owie! Owie! Owie!" is all I can say as I writhe around trying to get in a position that will make the agony stop. It's worse than labor pains, that's no lie.
It only lasts for a few minutes, but I am always alarmed and sure I am dying.
Last time I had the charlie horse was Christmas day. I had to get out of the kitchen and go lay down and roll around biting my lip trying not to scream.
I contributed it to wearing pants that were too tight which created the dreaded Muffin Top Effect, and then trying to bend over. Certainly one's guts cannot survive that kind of punishment without some objection. I have never in my life (before now) been overweight to any degree, so since I gained 20lbs after quitting smoking, I have had to learn all about the discomforts of carrying around 2 10lb sacks of potatoes I can't set down.
Before gaining the weight I had never had this weird gut cramp, so I am motivated to lose the extra baggage in hopes of never experiencing it again.
Besides the weight issue, I thought perhaps it could have something to do with the nerves controlling my guts. Kind of like spasticity of the intestines or something. Once you've had MS for a decade plus, you catch yourself blaming it for everything from an eye twitch to not being able to find your keys.
Then, in casual conversation the other day, I mention the gut cramp to a friend of mine. Turns out she (who does NOT have MS... or maybe she does? hmmm) has the same charlie horse thing happen to her! We started to compare notes.
We are both lactose intolerant but she has actually brought up the phenomenon with her doctor and was told it is related to the IBS she has also been diagnosed with. I have never had an actual diagnosis of IBS but naturally I googled it and now display all the classic symptoms. I guess maybe I have it. Who knows? But I'm going to keep wearing my comfy sweat pants and let it all hang out until I can get in to see a doctor to find out what's going on.
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