Sunday, March 29, 2009

My Angry Face

*Author's Note: I forgot to mention Trigeminal Neuralgia. How could I forget something so painful? As retaliation for my forgetfulness, the right side of my face hurt all night. I can only account for my negligence by pointing out that Princess was playing Wii Fit in the same room and wanted me to watch her every move, and kept up a running commentary on every thought as it passed through her head.

Unlike Old Yeller, who ain't gonna hurt nobody nohow, I very well may. I was dead tired last night, but it is impossible for me to go to sleep without first running my eyeballs over the printed word -- something me and my sisters all have to do; we think it is because my mom always let us take books to bed with us. It doesn't matter where I find that printed word, I will read the back of a laxative box if I have nothing else. I must read something, even if just a line or two or I won't get to sleep until I do.

Last night, not having anything else to read -- I'm between books right now -- I picked up a book about MS that I got awhile ago and have been reading off and on depending on whether I am in the mood to read any more about MS or not. I feel like I have read every damn book out there about MS, and unless it has some really cutting edge information, or something new to add to the whole library of knowledge already out there, I am not interested. This book caught my interest because it broke down the DMDs, how they are thought to work, and how they came about. So I fell into the trap and bought it. I was enjoying it until I came across a list of different symptoms that are common to MS. This book stated that pain is not usually a problem in MS and not often seen. Are you sh*tting me?! I wanted to throw that book against the wall and the only thing that stopped me is that I was afraid I would hit some of my antique breakables. If I had not been so dead tired, I would have ripped that book in half and shredded it with my teeth. I threw it to the floor, because I could not possibly let it touch my nightstand, and would have put it in my hamster's cage, but I cannot let him nest in such a pile of malarkey. That would be cruelty to animals. I felt like Old Yeller, frothing at the mouth and needing to be restrained from finding the authors of that book and biting their ignorant asses. In fact, whenever I think about it, I get my "angry face" all over again and am certain I am not the best doggone dog in the West. Let me tell you about my pain that is not from my MS because the authors of this book said so:

MS Hug

According to this book, it is only a tight band around the trunk of the body, no more than that. Funny, I am suffering with this MS hug and it is much more than just a "tight band." It is extremely painful and makes my days miserable and my nights restless. I envy anyone who only has a tight band, because mine blew past that stage so fast I never noticed anything other than a painful band around my chest. My muscles clench and make it feel like there is a hot knife being drawn down my body. Rather painful regardless of what any book says.

Optic Neuritis

My left eye hurts more often than not. My first attack took the vision in my left eye for almost 6 weeks, leaving me with diminished vision and loss of visual acuity in both eyes. There is almost always pain around my left eye and I know it has to do with MS because it is only around my left eye. It is not a headache, because it in localized in that one area.

My legs!

According to this book, the only pain one has in limbs is that burning sensation, of which I can't think of the technical term right now, and it is not pain, only a burning sensation. If they had ever had that sensation, they would know how painful it can be. My legs ache and I only have the frozen numbness, not the burning. And when my spasticity is working overtime, the resulting muscle cramps are very painful.

I don't know who these authors are, and I don't know who would want to be their patient -- one is a neurologist -- because I can't imagine having my pain swept under the rug and being told that it is not really there; even my neurologist accepts that my pain is real, regardless of whether it's the way it is "usually presented." I would bounce their book off their thick skulls and turn into Old Yeller right there.



Yeah, what she said!

**mumble mumble**

Lisa Emrich said...

Times, they are a-changin'

Thoughts and beliefs are being altered as we speak. In fact, last fall I was talking to an ER nurse at the J&J conference. She didn't know that MS caused pain, but now she does.

Keep speakin' up!! We need ya.

Travelogue for the Universe said...

My nurse side says God are health care professionals out of touch! My MS side says Where's my muzzle? My friend side says ignore people who don't have MS. They just don't know. My pain is like big bowie knives stabbing, my spasms sometimes are are worse than I could have imagined, my stress level causes symptoms to reappear.I have a hard time verbalizing this for the same reason all "patients" do. When they introduced the visual pain rating to nurses (frowny face bad-happy face no pain), all I could think of was what happens when you see a smiley face but you know the patient is hiding major pain? I could always tell when someone had pain. Part of it is believing people know their body. Home sick today. Is it sick from the meds or a bug? Who cares? Thanks for writing out all the things we want to scream about.I believe your pain. 3 day course of 1 Gram QD IV steroids calmed down my optic neuritis a few years ago. Mary Gerdt

Denver Refashionista said...

I hurt too. My skull aches often and when I am menstrual, forget about it. I get so inflamed that every part of me hurts. My joints swell and that hurts too. Maybe only people who have MS know about the pain and maybe they just don't mention it because it gets old.

Kimberly said...

Pain is a very real part of MS. However few know that until they are educated by an MS patient. I'm sure we all have had visits with Neurologist who were clueless when it came to MS. Blindbeard, keep up the good work. Your blog is one of the best! By the way in order to leave a comment when you did on my bog you were either up VERY late or got up early!

Deanna said...

Hi There

I am currently awaiting confirmation of an MS diagnosis via MRI

I too have been suffering from the 'MS Hug'. It started on the right side of my torso, just under my breast, and has since spread to the other side. It is a constant annoying pressure, it feels like I am wearing a tight bra, even when I'm not wearing one. When I take a deep breath it feels like this band that is constricting me is going to snap...but it doesnt.

Glad to read that I am not the only one in pain.