Rewind to about two years ago:
"Here have some of this (insert food item here)."
"I'm not allowed to eat that."
"Why?"
And so, this blog began...
We're rounding the corner on two year of blogging. Whooo, party! Given how much has changed during that time, and as a sort of celebration, I'm changing things up a bit around here.
First of all, this blog started out as a way to cope with my diet. It was meant to fend off being asked the same questions repeatedly; to cope with my new way of eating; to experiment with new foods; and to provide some levity to a very serious situation.
Then, it also became a place for updating people on my health. Again, it was a source of answering the barrage of questions in one place; a way to cope; to talk about experimental treatments; and for some escapism from the difficulties I faced.
Along the way if became a place of refuge; of hope; and of connecting with people who know me, or know similar situations, or who simply found a common bond.
I have used this space to rant, ask for help, rejoice, and laugh. I've grown and changed along the way, and now it's time for the blog to morph a little, too.
What's changing:
The name "Food Withdrawl"- While I'm always going to be experimenting with, and seeking out new foods and recipes, I'm not in withdrawal anymore. Also, not ONE person ever got the pun in the name, or even noticed that it was either a play on words or misspelled- which has bugged the crud out of me!
In his autobiography, pacifist and philosopher, Bertrand Russell stated, "This has been my life. I have found it worth living."
I chose to rename this blog after that quote. Despite everything that has happened thus far, and all the horrible things that I have been through: the pain, and surgeries, and organ failure, and struggle; the goodness, hope, love, and beauty I have experienced have far outweighed it. This has been my life. It wasn't what I would have chosen, but it has gotten me to where I am, and it has made me who I am. And I think it's been worth it.
The layout- I got tired of those vegetables. Really, can you blame me? If I never see another vegetable for as long as I live...
What's staying the same:
The recipes (hopefully I will post more of them), the pictures of what I'm eating, the updates on my health (hopefully less of them- no news is good news, yeah?), the quips and sarcasm, the refuge, the connections, the hope ("You gotta give em hope!" -Harvey Milk)...
So here's to another leg of this journey that started with a single step back in June 2010. Since that time, as of right now, this blog has been viewed 8,818 times. While a seemingly small number in the grand scheme of things, and blogs, I'm very thankful that people have cared enough about what I'm writing (other than my Mama, who probably accounts for about 1,000 of those views) to visit this page so many times. I really love when you comment, too- it makes my day, every single time. Thanks for being a part of the journey. It's been more than worth it.
Showing posts with label what doesn't kill us makes us stronger. Show all posts
Showing posts with label what doesn't kill us makes us stronger. Show all posts
Wednesday, May 2, 2012
Saturday, March 31, 2012
Feast or Famine
If you had to choose, would you rather know absolutely nothing, or know everything all at once? Six months ago, I chose to know nothing, resulting in six months of anxiety and anguish. Then, yesterday, I chose to have six months worth of information fed to me; which I promptly choked on.
Back in August, I chose to take a chance and "write my own life." My kidneys were functioning pretty well, considering. I was weaning off my heavy dose of steroids. I was brimming with hope. I started a blind six month clinical trial on September 30th.
Up to that point, I had been on a mostly need-to-know basis about my health. Just tell me what to eat, what medicine to take, what doctor to see, and I'll do it. I don't want to know numbers, or names, or reasons. It was just way too much for me to chew, so I didn't bother biting the bait. I figured, going into the trial, that what I didn't know couldn't hurt me. Wrong
The last six months have been nerve-wracking and difficult. In November, I experienced some kidney failure which screwed up a whole mess of stuff. That created some circulation problems which exacerbated my foot problems, leading to reconstructive foot surgery in December, which I'm still recovering from.
My trial ended a few weeks ago, and I had a bunch of tests done, including an EMG and nerve conduction study, my least favorite of all my tests, that made me cry, and which I failed miserably. I'll write about my jerk of a foot another day...
I was given the option of continuing the trial; going back to what I'd been doing before it; or seeking out new options. I sat on the decision for a few weeks. Mulled over the choices; made pro/con charts; and extended the deadline to make the decision, twice. I even took to Twitter and Facebook to help me decide: "I've been mulling over a big decision & can't decide. Should I choose option A, B, or C?? Pick one! I'll go with the most picked letter..."
Clearly, that didn't work out in my favor.
The D is compliments of a smart-ass
I ended up deciding that my old treatment made me feel like death, so that option was scrapped. I also decided that the current trial was too nerve-wracking, not knowing anything, so I scrapped that idea, too. I am currently seeking out new treatment options.
So, since I opted to end the blind study, I was able to go in and hear everything the trial entailed. Dun, dun, dunnnnn
Let me just say that I can't remember another time, ever, in my entire life, that I have been THAT angry. This is coming from someone who was a tornado of rage as a kid; from someone who was recently on heavy doses of steroids; from someone that used to make drunken scenes in bars. Hell hath no fury like me in that conference room yesterday. BUT, I didn't crush anyone's skull, I didn't even overturn my chair. (Look, I'm growing!) I didn't say anything more than "That is seriously fucked up (Yeah I said it, get over it) and I don't care to hear anything else you have to say. You can go now." I bet they still have stars in their eyes from the death rays I gave them.
"Irreversible kidney damage" "Circulation disruption" "Peripheral neuropathy" "Hearing loss" "Phototoxicity"
Well that sucks
As someone who already had underlying problems with my kidneys, nerves, hearing, and skin, it was very upsetting to learn that the main side effects of this drug were in my most problematic areas.
But, before you say what I've been hearing repeatedly. No, I'm not getting a lawyer. There are risks with any medication, especially the medications used to treat Aspergillosis. Furthermore, who is to say these areas aren't particularly problematic because of previous medications, rather than the infection, itself, to begin with. Even if I have my suspicions about what caused what, there's really no way to prove it. Last, I was paid a very large amount of money to participate in this trial, all of which was spent on my medical debt, and is long gone. I also signed a stack of paperwork that, in short, said "if we kill you, we're not responsible." I took a chance. It didn't go the way I'd hoped. Even if nobody is at fault, I can still be angry about it.
While I'm angry about the side effects, I'm not that angry at the medication, itself. I'm not even that mad at the researchers who developed it- it's all trial and error, and I get that. I'm only a little angry at the doctors for not telling me because they were just doing their jobs.
I'm mostly angry with the situation. Anger is a secondary emotion; and in this case, it is a combination of loss of control, disappointment, and shock. I'm angry that I have to deal with this shit. I'm angry that even my doctors are baffled by this disease and how to fight it. I'm angry that it wasn't a miracle drug that was going to save us all. And I'm angry that I was kept in the dark about all of it, and left to believe that all the pain, and weakness, and loss of feeling in my hands and feet, and blood toxicity, and kidney failure, and ear infections, and surgery were not necessarily directly related to the drug (even though I strongly suspected some of it had to be). I'm angry that I'm just now finding out these crucial facts four months later. I'm angry because it's scary.
What I'm most angry about is the fact that I went through this process, and screwed up my kidneys and circulation in the process; that I had surgery, and am having an extremely difficult time regaining function of my foot; and that my fungus levels are basically the exact same as when I started this trial. So basically, health-wise, I'm worse off in most ways for doing it. And that hit me HARD. There are good things that have come of it and when my roses sprout up from this pile of manure I'll be sure to spotlight them. In the meantime, I'm up to my elbows in dung and too distracted by the smell to look for silver linings, right now.
Now, I'm the risk taker of all risk takers, and a ridiculously hopeful optimist, mostly to my own detriment. But, the risks I take and the dreams I make are on MY terms. Letting someone else take risks with my life, and give me hope when there is none, and telling me what to do, without me knowing why, is not something I am interested in doing ever again.
Now that doing another blind study is off the table, I'm open to suggestions. I have enough medication to get by for about another month and then I'll need to put another plan in place.
In the meantime, I've got this playing on repeat:
Back in August, I chose to take a chance and "write my own life." My kidneys were functioning pretty well, considering. I was weaning off my heavy dose of steroids. I was brimming with hope. I started a blind six month clinical trial on September 30th.
Up to that point, I had been on a mostly need-to-know basis about my health. Just tell me what to eat, what medicine to take, what doctor to see, and I'll do it. I don't want to know numbers, or names, or reasons. It was just way too much for me to chew, so I didn't bother biting the bait. I figured, going into the trial, that what I didn't know couldn't hurt me. Wrong
The last six months have been nerve-wracking and difficult. In November, I experienced some kidney failure which screwed up a whole mess of stuff. That created some circulation problems which exacerbated my foot problems, leading to reconstructive foot surgery in December, which I'm still recovering from.
My trial ended a few weeks ago, and I had a bunch of tests done, including an EMG and nerve conduction study, my least favorite of all my tests, that made me cry, and which I failed miserably. I'll write about my jerk of a foot another day...
I was given the option of continuing the trial; going back to what I'd been doing before it; or seeking out new options. I sat on the decision for a few weeks. Mulled over the choices; made pro/con charts; and extended the deadline to make the decision, twice. I even took to Twitter and Facebook to help me decide: "I've been mulling over a big decision & can't decide. Should I choose option A, B, or C?? Pick one! I'll go with the most picked letter..."
Clearly, that didn't work out in my favor.
The D is compliments of a smart-ass
I ended up deciding that my old treatment made me feel like death, so that option was scrapped. I also decided that the current trial was too nerve-wracking, not knowing anything, so I scrapped that idea, too. I am currently seeking out new treatment options.
So, since I opted to end the blind study, I was able to go in and hear everything the trial entailed. Dun, dun, dunnnnn
Let me just say that I can't remember another time, ever, in my entire life, that I have been THAT angry. This is coming from someone who was a tornado of rage as a kid; from someone who was recently on heavy doses of steroids; from someone that used to make drunken scenes in bars. Hell hath no fury like me in that conference room yesterday. BUT, I didn't crush anyone's skull, I didn't even overturn my chair. (Look, I'm growing!) I didn't say anything more than "That is seriously fucked up (Yeah I said it, get over it) and I don't care to hear anything else you have to say. You can go now." I bet they still have stars in their eyes from the death rays I gave them.
"Irreversible kidney damage" "Circulation disruption" "Peripheral neuropathy" "Hearing loss" "Phototoxicity"
Well that sucks
As someone who already had underlying problems with my kidneys, nerves, hearing, and skin, it was very upsetting to learn that the main side effects of this drug were in my most problematic areas.
But, before you say what I've been hearing repeatedly. No, I'm not getting a lawyer. There are risks with any medication, especially the medications used to treat Aspergillosis. Furthermore, who is to say these areas aren't particularly problematic because of previous medications, rather than the infection, itself, to begin with. Even if I have my suspicions about what caused what, there's really no way to prove it. Last, I was paid a very large amount of money to participate in this trial, all of which was spent on my medical debt, and is long gone. I also signed a stack of paperwork that, in short, said "if we kill you, we're not responsible." I took a chance. It didn't go the way I'd hoped. Even if nobody is at fault, I can still be angry about it.
While I'm angry about the side effects, I'm not that angry at the medication, itself. I'm not even that mad at the researchers who developed it- it's all trial and error, and I get that. I'm only a little angry at the doctors for not telling me because they were just doing their jobs.
I'm mostly angry with the situation. Anger is a secondary emotion; and in this case, it is a combination of loss of control, disappointment, and shock. I'm angry that I have to deal with this shit. I'm angry that even my doctors are baffled by this disease and how to fight it. I'm angry that it wasn't a miracle drug that was going to save us all. And I'm angry that I was kept in the dark about all of it, and left to believe that all the pain, and weakness, and loss of feeling in my hands and feet, and blood toxicity, and kidney failure, and ear infections, and surgery were not necessarily directly related to the drug (even though I strongly suspected some of it had to be). I'm angry that I'm just now finding out these crucial facts four months later. I'm angry because it's scary.
What I'm most angry about is the fact that I went through this process, and screwed up my kidneys and circulation in the process; that I had surgery, and am having an extremely difficult time regaining function of my foot; and that my fungus levels are basically the exact same as when I started this trial. So basically, health-wise, I'm worse off in most ways for doing it. And that hit me HARD. There are good things that have come of it and when my roses sprout up from this pile of manure I'll be sure to spotlight them. In the meantime, I'm up to my elbows in dung and too distracted by the smell to look for silver linings, right now.
Now, I'm the risk taker of all risk takers, and a ridiculously hopeful optimist, mostly to my own detriment. But, the risks I take and the dreams I make are on MY terms. Letting someone else take risks with my life, and give me hope when there is none, and telling me what to do, without me knowing why, is not something I am interested in doing ever again.
Now that doing another blind study is off the table, I'm open to suggestions. I have enough medication to get by for about another month and then I'll need to put another plan in place.
In the meantime, I've got this playing on repeat:
Monday, May 16, 2011
Last Year
One year ago, I sat deer-in-the-headlights before a firing squad and endured a barrage of bullets that would leave my life riddled with holes: "mold" "infection" "fatal" "rare" "intravenous" "immediately" "neutropenic" "prognosis" "options" "anyone we could call?" "transfusions" "leak gut" "death" .....
I sat in that conference room with a team of doctors, in a daze, their hot words hitting my frozen, emaciated body and melting into a puddle beneath my chair- that I later slipped on as they helped me down the hall to the treatment room for more ivs.
It would take another week before I uttered a word to anyone. Another two weeks before I could stop eating the forbidden foods. Another month before I started this blog. Six months before I accepted any of it. A whole year before I really let myself feel emotions about it.
I started this blog because some things I couldn't say, but I could type. Because answering the same question over and over and over and over again was tiresome, overwhelming, scary and time consuming- whereas offering a link seemed better.
It's been hard: really, really hard. I've tried to be comical and upbeat about it; and I've fostered a lot of denial; and I didn't talk about a lot of things, but doing this blog has helped me find my voice.
It's been one hell of a year but I'm so glad to be here and for all I've learned about food and cooking and life! Thanks for being a part of that journey.
I sat in that conference room with a team of doctors, in a daze, their hot words hitting my frozen, emaciated body and melting into a puddle beneath my chair- that I later slipped on as they helped me down the hall to the treatment room for more ivs.
It would take another week before I uttered a word to anyone. Another two weeks before I could stop eating the forbidden foods. Another month before I started this blog. Six months before I accepted any of it. A whole year before I really let myself feel emotions about it.
I started this blog because some things I couldn't say, but I could type. Because answering the same question over and over and over and over again was tiresome, overwhelming, scary and time consuming- whereas offering a link seemed better.
It's been hard: really, really hard. I've tried to be comical and upbeat about it; and I've fostered a lot of denial; and I didn't talk about a lot of things, but doing this blog has helped me find my voice.
It's been one hell of a year but I'm so glad to be here and for all I've learned about food and cooking and life! Thanks for being a part of that journey.
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