Wednesday, March 25, 2009

Dear Blindbeard

I've been meaning to do this, but life took me away from my blogging pleasures for awhile and decided I needed to eat hospital food for a change. Now that I am back to food that is easily identified, instead of a guessing game, I am more than ready to return to my usual blather. Speaking of food that is not identifiable, Princess was playing Cooking Mama 2 on her DS last night and was scandalized when she had to make a dish with horse meat. She and I just had a long talk about how the foods that we assume are "normal" are not the norm for the rest of the world, and she was horrified that people could eat some of the things they do. As a person who eats too many bugs because she doesn't always check her drinks before she tosses them down her throat, I am not as shocked that people eat differently than us. Before I run away with all this, lets get back to what I really wanted to do here: my beloved Dear Blindbeard column.



Dear Blindbeard,

I have been lurking around your blog since I was diagnosed in April of 08. I truly appreciate seeing someone who has the outlook and slant on life that I do. I am really not much on MS support groups, why would I want to sit around and listens to complete strangers talk about their brains liquefying? I did sign up to do the local MS walk, though. Here lies my question for you: after I was diagnosed I was very angry (now I am just angry) but I had a t-shirt made that says "MS can just suck it" Do you think it is in bad form to wear that to the MS walk? Your thoughts are greatly appreciated.

Thank you,
Brain Mush


Dear Beautiful Brain Mush,

I too hate support groups. Whenever I have to attend a function with a large grouping of MSers, I always come away irritated and convinced that people with MS are either pompous know-it-alls or have no idea what the words "personal hygiene" mean -- which makes me wonder which group I fall into. As a person who showers, brushes her teeth and applies pit juice every day, I have to assume that I am a pompous know-it-all. I am not a pie-in-the-sky person and I suspect that there are many out there who are not either. I would definitely wear such a t-shirt and even have several ideas of my own to wear to this year's walk. For every one that cannot relate to that message, there has to be someone who will, and who would appreciate someone else with the same attitude. Sometimes I think no one wants to say how much they hate having MS because it is not socially acceptable to say such a thing; everyone wants to put on a brave face and show how much, "they have MS it doesn't have them." Some days I know MS has me regardless of all the inspiring catch phrases out there to try and make me think otherwise. When I am barely able to get off the couch and pain has me in it's tight evil grip, MS has me, not the other way around. By all means, please represent those of us who feel the same way and do not apologize for having your own opinion.

Love,
Blindbeard


Dear Blindbeard,

MS Hug? WTF..what a freekin name for something so painful. I have SPMS and was DX'd back in 1997 (I think). Somethings u just wanna forget. I've had this pain for about week, went to the ER, explained to them that YES I have MS as well as RSD. So the idiots see that my left lower leg has a lump (swelling and is hard). OMG I must have an embolism. Idiots. I figured, hey maybe they are right this time, who knows, after they are the ones with the medical degrees. Had all bloodwork, Xrays of lungs, chk'd for UTI, and who knows what else. So now I wait and wait and wait for dr to tell me whats wrong. Well the pain was unbearable and couldn't wait anymore. Told them they were all F'rs and left. They came running after me. "Oh Miss, U need to sign this paper as we will not b responsible if U leave now. Again I say, F U. The other hospital was a hell of a lot better than this one. "Well then why did U not go to that hospital?" Now I am freekin mad and in my usual calm voice I said, "They F'n closed the old hospital and built this 'new state of the art hospital'." Well I came home and they called me at 6 pm. OH U have to come back to emerg STAT and get an injection. WHAT? Well Miss we think u have a blood clot and PE. U need to come in NOW u may die. Again DR have medical degrees so I go back and get 2 injections of blood thinners. The also tell me that I have to come in next morning at 8 am for venous doppler as well as a spiral CT scan of lungs. OK. So what happened U ask? "Well Miss all is well, u have no clots u may go home." But what about this pain? Is this my MS acting up again? "I don't know, go to your family dr." So here I am in pain on the scale of 10 plus. Last year they did the same to me. Same hospital, just opened, I was having speech problems as well as bladder mishaps so I went. Idiots treated me for a stroke. Hubby kept telling them, she needs roids now she's having an MS attack. NOOOOOOOO, we know nothing. We just suffer. Sorry I am so pissed and hurting. Can't sit, can't lay down. Gotta see if I can sprout wings and float around. MS is a bitch.

Thanks,
Anonymous


Dear Beautiful Anonymous,

I enjoyed this letter too much. I laughed the whole way through and all I can say is, I like the way you talk and would like to subscribe to your monthly magazine. I thought about going to the ER when my pain peaked at "10 plus," but knew they would do nothing for me and was worried they would misdiagnosis me and try to admit me -- EEEEEK! That is unacceptable. So I stayed home and ate pills until I could get a hold of my neurologist. Keep rockin' out with your pockets out! (Thought I was going to go somewhere else with that, didn't you?)

Love,
Blindbeard


Dear Blindbeard,

As far as the effing MS Molester Hug, I've not found much that works... tried narcotics, seizure meds, anti-inflammatories... oddly though, it has seemed (and I say this with caution and avoiding your fists) sometimes if I actually CREATE something tighter around the area, for whatever reason, my actual muscles seem to relax some... try at your own risk and don't hate the messenger. :-)

Braincheese


Dear Beautiful Braincheese,

How funny! I found that if I wrap my arms around my chest, it makes it better. I drive, clean, run errands etc, with one arm holding my chest tightly. My mom suggested I go to a medical supply store and get one of those binding things for people who break a rib. I haven't made it there yet -- I keep hoping it will go away -- but think I may go soon and invest in one. Its good to know that it works for someone else. I needed that motivation.

Love,
Blindbeard

5 comments:

Brain Mush said...

Thank you for commenting, it relly made my day. it is nice to know you are not alone in the world.

Brain Mush said...

Jeez I guess that preview button is there for a reason!

Kimberly said...

Glad you back and in rare form! I have a question for you. I could have posed it in my blog, but I often wonder if anyone READS my blog! LOL. Regarding the MS "hug" (Stoooopid name for it). I'm big on trying "non-traditional" treatments for my MS,(Hence the trips to Corpus Christi and my "machine"). One thing that I recently started using for my back pain (unrelated to MS) is a TENS unit. Has anyone that you know of tried to use a TENS unit or muscle stimulator to lesson the pain related to muscle spascity or lesson the actual spasms? I'd be interested to hear your thoughs.

Webster said...

Hi Blindbeard,
Having never experienced the MS Hug,I can't speak from experience, but the Cheese's suggestion spoke to me about the gate control theory of pain. I have experienced using it once, when I had a horrible itching on my shoulder not caused by anything I could ascertain. The only this that provided relief was cold, as in a washrag wet in ice water and wrung out.

In your case, I guess the extra pressure beats the pain to the brain.

Here's a link about the theory:
http://www.spine-health.com/conditions/chronic-pain/modern-ideas-gate-control-theory-chronic-pain

You'll have to copy and paste because I don't have mad computer skillz.

Good luck.

BRAINCHEESE said...

WooHoo! Escaped your fist...this time.