Eternal Sunshine of the Spotted Mind
Dear MS, eat a dick and not my brain. Kthxbye.
Monday, September 19, 2011
Thursday, September 1, 2011
Silver Linings.
Sooooo lately I've been feeling kind of down. Not for any reasons specifically, but my health certainly does not help. I'm not exactly in a constant state of sadness and irritability, but my downs have been a little more frequent lately than I'd like. I find what usually works best in these situations is a good night's sleep, some sort of retail therapy, and giving a big middle finger to the Debbie Downer in me by coming up with a list of silver linings in my life. These are my top five.
Why MS Is NOT The Most Terrible, Awful, No Good, Very Bad Thing Ever:
1.) Higher probability of developing a really convincing zombie lurch/pimp limp/pirate swagger
2.) Eligible for medical marijuana if my states legislation ever gets their shit together
3.) MRI appointments make for really good nap time
4.) Extra fire under my ass to not fuck around and let things hold me back from doing what I want to do
5.) Tons of people walk, bike, raise money, extract stem cells from aborted fetuses, conduct research, and collect data every year to help find ways to slow down and/or cure MS. At some point, something's gotta give, right?
Why MS Is NOT The Most Terrible, Awful, No Good, Very Bad Thing Ever:
1.) Higher probability of developing a really convincing zombie lurch/pimp limp/pirate swagger
2.) Eligible for medical marijuana if my states legislation ever gets their shit together
3.) MRI appointments make for really good nap time
4.) Extra fire under my ass to not fuck around and let things hold me back from doing what I want to do
5.) Tons of people walk, bike, raise money, extract stem cells from aborted fetuses, conduct research, and collect data every year to help find ways to slow down and/or cure MS. At some point, something's gotta give, right?
Paging Dr. Hottie
Along with my little visit to the MRI tube, my primary care physician also referred me to a neurologist. I was really really excited to find out that his office was right by where I work, and also excited to find out he was the most attractive doctor I've ever been to.
EXHIBIT A.
His examination consists of checking my reflexes, checking for weakness, and sticking me with the sharp/dull end of a pin to see if I can tell which end is which. He orders more MRIs, and an EMG test, which consists of poking me with acupuncture needles and administering small electric shocks to m my legs, which would have been a jolly good time, had it been performed by Dr. Hottie. Instead I got the scruffy and rather ancient EMG specialist in the office.
His initial diagnosis was transverse myelitis, which is basically a fancy name for an inflammation in the spinal cord. It can be caused by a number of things, including shots, viruses, and of course multiple sclerosis.
I went and got my MRI done of my thoracic and cervical spine, and since I needed to do it with and without the contrast dye shot, I couldn't do my brain as well. I sent the results to Dr. Hottie and waited and waited to hear anything. During this time I also received a phone call from my primary care doctor in which she mentioned that the report on my lumbar MRI included a cyst on my spinal cord (it was benign, but it was something which Dr. Hottie neglected to inform me about) By this time my numbness had dissipated as well as my faith in Dr. Hottie, and I called him asking if I really needed a brain MRI. He went on about "abnormalities in white matter in my cervical spine" and other things I didn't understand. So I complied with his request for a brain MRI.
I show up for my follow up, and he takes me back in the office, doesn't ask for my MRI discs, nor does he even have my file on him. He sits me down and tells me that there is evidence of the same abnormalities in my brain as there were in my spinal cord and that it is sufficient evidence of multiple sclerosis. He then hands me a hefty stack (roughly a bookbag full) of literature on the disease and treatments, tells me to read up on all of them and choose one, and sends me on my way.
I hop in my car and just scream, "WHAT THE FUCK."
Dearest Dr. Hottie,
1.) If there are abnormalities in my brain and spinal cord, you better damn well show them to me.
2.) If you're diagnosing someone with MS, explain more about MS besides "no one dies from it"
3.) The last thing I want to do after a heavy diagnosis is fucking homework
4.) The literature all talks shit about every other treatment, so how am I supposed to know what is what? You're the fucking doctor, and I'm pretty sure it's a big part of your job to dole out the scrips, not my job to choose what I'm prescribed.
It's a terrible, uneasy feeling to leave a doctor's office with a hundred thousand questions in your head regarding your condition. Needless to say I didn't schedule a follow up.
EXHIBIT A.
His examination consists of checking my reflexes, checking for weakness, and sticking me with the sharp/dull end of a pin to see if I can tell which end is which. He orders more MRIs, and an EMG test, which consists of poking me with acupuncture needles and administering small electric shocks to m my legs, which would have been a jolly good time, had it been performed by Dr. Hottie. Instead I got the scruffy and rather ancient EMG specialist in the office.
His initial diagnosis was transverse myelitis, which is basically a fancy name for an inflammation in the spinal cord. It can be caused by a number of things, including shots, viruses, and of course multiple sclerosis.
I went and got my MRI done of my thoracic and cervical spine, and since I needed to do it with and without the contrast dye shot, I couldn't do my brain as well. I sent the results to Dr. Hottie and waited and waited to hear anything. During this time I also received a phone call from my primary care doctor in which she mentioned that the report on my lumbar MRI included a cyst on my spinal cord (it was benign, but it was something which Dr. Hottie neglected to inform me about) By this time my numbness had dissipated as well as my faith in Dr. Hottie, and I called him asking if I really needed a brain MRI. He went on about "abnormalities in white matter in my cervical spine" and other things I didn't understand. So I complied with his request for a brain MRI.
I show up for my follow up, and he takes me back in the office, doesn't ask for my MRI discs, nor does he even have my file on him. He sits me down and tells me that there is evidence of the same abnormalities in my brain as there were in my spinal cord and that it is sufficient evidence of multiple sclerosis. He then hands me a hefty stack (roughly a bookbag full) of literature on the disease and treatments, tells me to read up on all of them and choose one, and sends me on my way.
I hop in my car and just scream, "WHAT THE FUCK."
Dearest Dr. Hottie,
1.) If there are abnormalities in my brain and spinal cord, you better damn well show them to me.
2.) If you're diagnosing someone with MS, explain more about MS besides "no one dies from it"
3.) The last thing I want to do after a heavy diagnosis is fucking homework
4.) The literature all talks shit about every other treatment, so how am I supposed to know what is what? You're the fucking doctor, and I'm pretty sure it's a big part of your job to dole out the scrips, not my job to choose what I'm prescribed.
It's a terrible, uneasy feeling to leave a doctor's office with a hundred thousand questions in your head regarding your condition. Needless to say I didn't schedule a follow up.
Saturday, August 27, 2011
Magnetic Resonance Imaging.
After going to the doctor the first time, and freaking out, and waiting an hour because my doctor never has her shit together (I thought I always ran late) I'm told I need an MRI.
This scares the shit out of me for two reasons:
1.) The fear that something might seriously be wrong with me.
2.) The only thing I know about MRIs is that Dr. House likes to do them a lot, and my mind immediately flashes to that one episode where LL Cool J has all his prison tattoos sucked out of his skin. Being a heavily tattooed individual, I'm convinced this is exactly what is going to happen to me. And no, in case you were wondering, none of my tattoos were obtained in prison.
I take my referral and go to Community Radiology, they give me a form and I check "no" to two pages of things like, "have you ever had an injury to your eye involving metal?" or "do you have an aneurysm clip?"
They send me to the back, and I take off my clothes and go through the tedious procedure of removing all of my body piercings. They have me waiting in a little room but I'm able to briefly peep inside the MRI room. It kinda reminds me of this:
"The Pipe"
To my suprise, it's not so bad. I'm not claustrophobic, and I don't get all my tattoos sucked out, and besides being incredibly noisy it kind of reminds me of the beds on the plane when they're on the way to Fhloston Paradise in The Fifth Element. I fell asleep almost immediately. Trippy dreams ensued. In fact at one point I think they even had to wake me up because I moved or some shit. While it's kind of disappointing that this is going to be a part of the rest of my life, I'm okay with taking a nap in a tube once in awhile.
This scares the shit out of me for two reasons:
1.) The fear that something might seriously be wrong with me.
2.) The only thing I know about MRIs is that Dr. House likes to do them a lot, and my mind immediately flashes to that one episode where LL Cool J has all his prison tattoos sucked out of his skin. Being a heavily tattooed individual, I'm convinced this is exactly what is going to happen to me. And no, in case you were wondering, none of my tattoos were obtained in prison.
I take my referral and go to Community Radiology, they give me a form and I check "no" to two pages of things like, "have you ever had an injury to your eye involving metal?" or "do you have an aneurysm clip?"
They send me to the back, and I take off my clothes and go through the tedious procedure of removing all of my body piercings. They have me waiting in a little room but I'm able to briefly peep inside the MRI room. It kinda reminds me of this:
"The Pipe"
To my suprise, it's not so bad. I'm not claustrophobic, and I don't get all my tattoos sucked out, and besides being incredibly noisy it kind of reminds me of the beds on the plane when they're on the way to Fhloston Paradise in The Fifth Element. I fell asleep almost immediately. Trippy dreams ensued. In fact at one point I think they even had to wake me up because I moved or some shit. While it's kind of disappointing that this is going to be a part of the rest of my life, I'm okay with taking a nap in a tube once in awhile.
Friday, August 12, 2011
Uncomfortably Numb.
I guess my whole story starts sometime earlier this year. The very first things I noticed were that I could sleep for 12 hours and still feel exhausted, and that I was forgetting where I put things and having serious problems with short term memory. I chalked it up to the fact that I am ADD and a bit of a stoner, talked briefly about going back to a psychiatrist and being prescribed Adderall, then forgot about it.
April 2, 2011-- I'm at work like I normally am on a Sunday. I'm an apprentice hairstylist and Sundays are my favorite day because I get to take walk-ins. I'm nearing the end of my day, when I start to notice that my feet feel like they're asleep. Unlike many of my coworkers, I don't wear Gaga heels, I wear super breathable, super comfy canvas sneakers. I'm the color room jogging in place for a few minutes, waiting for that tingly pins and needles sensation that comes with the rush of blood back to a numb extremity. I' m afraid that my smoking and bad eating have caught up with me and I am having some sort of blood vessel constriction. I go home and obsessively massage my feet, try to relax, and decide to wait it out till the morning.
April 3, 2001: I wake up at 7am exactly, like I do every morning (this is apparently common in MS patients, I never did this until recent years). This time, I don't go back to bed, because it feels like someone shot me up with Novocaine from the waist down. I panic. I get out of bed and breathe a small sigh of relief when I discover that I don't seem to have any problems walking. I wonder if my delightfully squishy memory foam mattress has set my back out of alignment and I've pinched some important nerve. I open up the computer to Google. Every doctor I've ever had has told me to avoid self-diagnosing on WebMD, and while I don't need to get myself any more worked up, I need something to explain what's causing my body to go numb. The very first answer to pop up is MS. I write it off, after all I am 22, and I have no family history of MS. The only people I've encountered with MS that I was aware of were physically disabled and at times horribly depressing, and I'm neither. My search, however, is popping up with other scary things too-- nasty viruses, stroke, Lyme disease, etc. I drink too many energy drinks to ever have a vitamin B12 deficiency, and at this point I am begging fate to do me a solid and let it be a small injury, I'd even take a thyroid problem.
By now it's 11am. My boyfriend wakes up and finds me in the shower, panicking, scrubbing furiously at my skin to try and awaken any sort of sensation. My efforts have done nothing except make my skin ridiculously pink. At this point I'm so confused and terrified that all I can do is ball up in the fetal position and sob, probably scaring the hell out of my boyfriend because up until that point I don't think I'd cried a tear in front of him. He calms me down, and tells me I need to call my doctor. I agree, and the story continues.
April 2, 2011-- I'm at work like I normally am on a Sunday. I'm an apprentice hairstylist and Sundays are my favorite day because I get to take walk-ins. I'm nearing the end of my day, when I start to notice that my feet feel like they're asleep. Unlike many of my coworkers, I don't wear Gaga heels, I wear super breathable, super comfy canvas sneakers. I'm the color room jogging in place for a few minutes, waiting for that tingly pins and needles sensation that comes with the rush of blood back to a numb extremity. I' m afraid that my smoking and bad eating have caught up with me and I am having some sort of blood vessel constriction. I go home and obsessively massage my feet, try to relax, and decide to wait it out till the morning.
April 3, 2001: I wake up at 7am exactly, like I do every morning (this is apparently common in MS patients, I never did this until recent years). This time, I don't go back to bed, because it feels like someone shot me up with Novocaine from the waist down. I panic. I get out of bed and breathe a small sigh of relief when I discover that I don't seem to have any problems walking. I wonder if my delightfully squishy memory foam mattress has set my back out of alignment and I've pinched some important nerve. I open up the computer to Google. Every doctor I've ever had has told me to avoid self-diagnosing on WebMD, and while I don't need to get myself any more worked up, I need something to explain what's causing my body to go numb. The very first answer to pop up is MS. I write it off, after all I am 22, and I have no family history of MS. The only people I've encountered with MS that I was aware of were physically disabled and at times horribly depressing, and I'm neither. My search, however, is popping up with other scary things too-- nasty viruses, stroke, Lyme disease, etc. I drink too many energy drinks to ever have a vitamin B12 deficiency, and at this point I am begging fate to do me a solid and let it be a small injury, I'd even take a thyroid problem.
By now it's 11am. My boyfriend wakes up and finds me in the shower, panicking, scrubbing furiously at my skin to try and awaken any sort of sensation. My efforts have done nothing except make my skin ridiculously pink. At this point I'm so confused and terrified that all I can do is ball up in the fetal position and sob, probably scaring the hell out of my boyfriend because up until that point I don't think I'd cried a tear in front of him. He calms me down, and tells me I need to call my doctor. I agree, and the story continues.
Tuesday, August 9, 2011
A Chacun Son Histoire.
Two years ago I received a moleskine notebook as a gift from a family friend overseas. The cover reads, in French, "Each person has a story."
I used the notebook to write down recipes, grocery lists, quotations, new French phrases I picked up, a eulogy for my grandfather. But never a story. I never really felt like I had one to tell, save for several silly vignettes about my sweet life in Philadelphia when I was in college, or that awesome time when 8 people and a bottle of rum evaded the police.
Fast forward two years and I am newly diagnosed with MS. Ol' Wikipedia has lots of fun things to say about it, including :
-broad spectrum of signs and symptoms
-the cause remains unknown
-often progresses to physical and cognitive disability.
-permanent neurological problems often occur
-There is no known cure
-MS medications can have adverse effects or be poorly tolerated
-Life expectancy of patients is 5 to 10 years lower than that of the unaffected population.
And that's just in the first paragraph. So naturally, upon reading that, I'm freaking out, thinking I'm going to become crazy and crippled, and die 5-10 years earlier than I'm supposed to (My lifestyle already makes my chances of living to be 100 incredibly slim). It was bucket list time, and I decided to start this blog.
I still don't know the direction this is going to go. I want to connect with other people going through the same thing, or help the people that aren't understand it just a little bit better. I don't even just want to talk about MS, because my life is still awesome albeit changed forever by this super inconvenient diagnosis. We'll see what happens.
I used the notebook to write down recipes, grocery lists, quotations, new French phrases I picked up, a eulogy for my grandfather. But never a story. I never really felt like I had one to tell, save for several silly vignettes about my sweet life in Philadelphia when I was in college, or that awesome time when 8 people and a bottle of rum evaded the police.
Fast forward two years and I am newly diagnosed with MS. Ol' Wikipedia has lots of fun things to say about it, including :
-broad spectrum of signs and symptoms
-the cause remains unknown
-often progresses to physical and cognitive disability.
-permanent neurological problems often occur
-There is no known cure
-MS medications can have adverse effects or be poorly tolerated
-Life expectancy of patients is 5 to 10 years lower than that of the unaffected population.
And that's just in the first paragraph. So naturally, upon reading that, I'm freaking out, thinking I'm going to become crazy and crippled, and die 5-10 years earlier than I'm supposed to (My lifestyle already makes my chances of living to be 100 incredibly slim). It was bucket list time, and I decided to start this blog.
I still don't know the direction this is going to go. I want to connect with other people going through the same thing, or help the people that aren't understand it just a little bit better. I don't even just want to talk about MS, because my life is still awesome albeit changed forever by this super inconvenient diagnosis. We'll see what happens.
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