Watch Out For Your Cornhole
You Might Feel a Pinch
>ð|~@-@~|ð<
You Might Feel a Pinch
>ð|~@-@~|ð<
Great News! I have more brain death than ever before! Yeah! And what’s even more exciting boys and girls is that I have entire chunks of my brain that are now dead lumps of stinky rotted meat inside my skull in NEW AREAS where I’ve never had lesions before. Yippy.
My lesions have pretty much always stuck to the same half a dozen areas in my brain and they pop up and go away and pop up and go away. For the most part, they stay gone long enough for my neurons (brain cells) to be able to mostly heal. That way instead of 100% brain death for each lesion, I’m only getting 10% brain death, nice and slow decay, except for my central gyrus where the big boy hit with a fury (that’s why I walk with a cane now).
Whenever I get an MRI Report, I always feel this sinking feeling in the pit of my stomach, like I’m going to throw up. I’m both anxious to read the Report and afraid to read the Report. And when I read the Report and I come to sections like this, my heart skips a beat, and sinks. No one ever Expects The Spanish Inquisition! …No one ever Expects Brain Atrophy!
“focal FLAIR hyperintensity in the juxtacortical white matter with involvement of the U-fibers. There is enlargement of the adjacent sulci, compatible with focal atrophy….hyperintense lesion at the level of the left pericallosal white matter adjacent to the genu of the corpus callosum…”
Yummy! Brains…brains…cold, dead, non-functioning, rotten, but stuck, trapped inside my skull brains… I need a “nano-zombie” to go in there and clean up all that yucky mess! LOL!!!
When I got my first “black hole” (that’s what we call those little black spots on your MRI ‘atrophy’ that should be nice, happy, smart, living brain matter, but instead is just black, dead brain cells), it hit me really hard. I broke down, sobbing uncontrollably. It’s not every day that you look at an image of your brain and you see a spot that should be alive and thinking, but instead it’s dead and once brain cells, neurons die, they NEVER grow back. I’ve had a few more smaller black holes here and there, but not as big as my first one. However on this MRI, there are half a dozen or so. I didn’t even finish looking through all the films on the CD. I just stopped half way through. I didn’t want to see any more. There’s no point.
That’s funny because Dr. Clarke said the same thing when I asked her about getting an MRI more often. She said there’s no point. What good is it going to do? So we don’t catch your brain when it’s in a highly active period. So what? If we did, there’s nothing that we could do because the ONLY treatment that you can do when you have a flair up of lesions is steroid infusions and guess who’s allergic to steroids? Yep, me. Isn’t that a bitch? The only treatment available that “may” help slow down the lesions, is a treatment that I’m allergic to and made me go half blind when they infused me with them in the beginning before we all knew that I was allergic to steroids! LOL!!!
Anyway, there’s the latest news on the MRI. A couple new lesions and half a dozen or so new chunks of brain death. I’m a little bit more senile today than I was yesterday. I’m 38 and I have dementia and am getting as senile as an old man ![]()
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I went to the neurologist today.
Reality Check…
She said that I was maxed-out on Hydroxyzine and that medical science had no other drug stronger or more effective for treating MS Pruritis, which is phantom itching. The entire left side of my head and neck itch constantly. It’s maddening. When it first started, it was all I could do to keep from taking a knife and carving my scalp off to make the itching stop. No matter how much I scratched, it had absolutely no effect. You see, it’s the damaged nerve cells in my brain that’s “telling” my brain that the entire area is itching, but there’s really nothing irritating the skin that’s causing the itching. So no creams, or salves, or ointments, or scratching is ever going to make it itch any less or go away.
Then Glory Be to God, my Neurologist found that a drug they give to drunks for the DT’s in rehab going through detox, or to nervous patients right before surgery to calm them down, actually has this weird effect on the neurons in MS People that slows down those “bad itching neurons” from firing so much, so you itch less and it becomes more bearable to live your life, still constantly itching, but not itching to the point of madness. You learn to stop scratching like a junkie and control yourself. You learn to stop thinking about that constant itch and to try to ignore it. However, my itching is creeping up again. Now it’s constantly on my mind, constantly itching, constantly having to control myself to keep myself from scratching and scratching and scratching until my skin is raw and bleeding…I must control myself. But the itching won’t stop or go away.
And today my Neurologist tells me that I am at the maximum safe dosage already, that there are no other more powerful drugs, that Medical Science hasn’t figured out how to fix it yet…that my itching is going to get worse and that there is nothing anyone can do to make it stop or to help me and that I must just endure the maddening itching forever. Science just discovered a couple weeks ago what kind of MS I have, let alone how to treat specific symptoms of it, so I’m screwed.
Reality Check…
Ever since I got MS, I’ve felt like my left arm is being drawn and quartered. Has anyone ever had bursitis with bone spurs with torn ligaments with decayed cartilage with a pulled trapezius muscle with a dislocated shoulder blade? Well if so, then multiply that pain by tenfold and that’s what being drawn and quartered feels like. I literally feel as though my left arm is being twisted and torn away from my body and all the muscles connected to my arm are all tight and in pain just like they would be if it were being torn away, and the pain radiates down my entire arm. Mostly it’s my triceps and biceps and forearms that hurt. Every now and then the pain makes it all the way down into my hands and it takes my breath away.
Reality Check…
When your hand has been chopped in half, you stop and pay attention! In fact, you stop breathing. You stop moving. You stop thinking. I think your heart even stops beating for a second or two because the pain is so excruciating. I never knew that you had so many “sensory” nerves in your hands until this. I always knew that you had a lot of sensitivity in your fingers, but I guess it never occurred to me that all those nerves in your fingers have to get there somehow…and they get there via your hands and there are a lot of nerves, places for your tricky brain to cause pain, in your hand. There’s nothing quite like being in the middle of a conversation and then having your hand chopped in half, and then having that half pulled apart, and then dipped into hot lava, and it lasts for 20 seconds to several minutes. It’s all I can do to keep from crying. It hurts so bad that I can’t even talk to tell Sheri what’s going on and why I’ve stopped talking. And when the pain stops and I can move and breath and speak again, sometimes all I can do is break down sobbing and crying helplessly.
Reality Check…
An Angel from Heaven in disguise as a Doctor in an Emergency Room gave me one of the only medications that has kept me from walking out into the ocean and ending my pain quickly. That’s called, Neurontin. It’s not a normal, “junkie-style” pain medication. You’ll never see this stuff on the streets. Neurontin is a Nerve Pain medication. It’s not an opiate like morphine or oxycodone. It works inside your brain to help make those damaged neurons/brain cells “feel less pain, or think they are in less pain” so that you “feel” less pain. Since there’s actually nothing physically wrong with you, pain medications have no effect on you whatsoever. I have an extremely high tolerance for pain. I have an 8mm bulging disk in my spine, and it’s just one of many bulging disks and I’ve been on Fentanyl and high-dose MS-Contin and neither one did anything for my neuralgia (that’s nerve pain, my MS Pain).
Reality Check…
Have you ever seen a hot cattle prod? Have you ever seen a 1,000 pound bull jump and holler when it’s stuck with a hot cattle prod? I have had a hot cattle prod pressed up against my left collar bone for 6 years now. I think all the flesh burned off years ago and the bone has been burnt to ashes and it’s just burning for fun now. LOL!!! Seriously though, this one just freaks me out so much that I don’t even know what to say about it or exactly how to describe it. It’s a freaky, painfully freaky feeling. It feels like my collar bone is on fire, like it’s being pushed into my body and is about to snap at any moment, and like someone is pulling on it trying to pull it out of my body, all at the same time. I told you it was a freaky! It feels like it’s pushing on my throat too and sometimes I have problems swallowing.
I can’t eat or drink because my throat muscles won’t function properly. It’s like that pressure my collar bone is pushing at the base of my throat has disabled my brains entire ability to swallow, or like I have simply “forgotten” how to swallow. Swallowing is labored and difficult, and sometimes I simply just am unable to swallow anything, even my own saliva.
Reality Check…
The pain I feel has been kept to manageable levels. Sometimes it hurts so bad that I cry or that it takes my breath away, or that I have to lay down or sit down, or that I can’t move, but most of the time, it’s just a constant pain that I feel, always. However, the Most Blessed and Holy Neurontin has been my Savoir throughout these past 6 years and has kept the pain at bay for 85% of the time. And 15% of the time in screaming agony is something I can totally handle, no problem given my options on the table!!
However, for the past few months, the pain has been growing, getting worse. Instead of being in agony 15% of the time, I’m in agony 45% of the time now. I had hoped that my neurologist would simply “wave her magical wand of Medical Science” and write me a prescription for something different, some new medication that I’ve not heard of, or change around my dosage, increase it or something, do something to help make the pain stop. But instead, she said that I was already at the maximum dosage levels that were safe for human consumption and that there were no other drugs available. Medical Science has not yet developed any new medications. In the past SIX YEARS Medical Science has not made a single tangible step forward. Oh yes, there has been progress in research studies in Canada and Great Britain, and in a study at UCLA but that doesn’t mean that there is a new “wonder drug” on the market, or A Cure. It just means that they’ve discovered some new quirky piece of information that helps them solve one more piece of the convoluted puzzle of Multiple Sclerosis.
Reality Check…
It’s going to take some “digesting” for me to come to terms with “you’re already maxed out on all the pain medications we have and there isn’t any other medical science in existence that can help you…so you’re just going to be in pain forever”…and it’s getting worse and more painful…and I’m not going to get more or a stronger dosage or some other medication that’s going to take the sharp, stabbing, screeching edge off the pain and just make it a bearable scream that you can tolerate after a while.
Reality Check…
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