Goodbye Crewel World

Whenever I don't feel well I always think of that Far Side cartoon where the spider hangs itself and written in the web is the title of this post. Not that I am a fan of crewel work, mind you. My mom used to do a ton of it when we were growing up and I always hated it -- so cutesy and whimsical -- everything I am not. I feel like a cesspool in the hot summer sun today -- gelatinous and nauseating. Everything is adding up now: why my vision is spotty, especially my left eye, the one that I have ON in and the lid feels droopy and like it is covering part of my vision field; why the last 2 days I spent more time asleep than awake, which is not like me; why I feel so shaky and weak and like I could trip over a dust mite. I was coming down with something! My little sister is not feeling well either; she threw up this morning. My body never throws up, it likes to torture me too much to just get rid of something unacceptable. I hate being sick but being sick in summer is so much worse. I want to go curl up in bed but it is too warm to snuggle up under covers. Soup might make my stomach feel better (not sure anything could make it feel worse) but who can eat soup in this heat? I think I am going to make a milk shake, burn out my faulty eyeballs on TV and go back to bed as early as I can. Ugh... hope everyone is feeling better than me. I will be back soon. Blindbeard out.

Before I Forget...

I have to get these 2 things down here before I forget again. First I want you to know that I enjoy your comments too much. I don't always respond but I almost always laugh. I don't know how many times I have cackled in this room by myself over some of the stuff you think up. Sometimes I take my laptop with me and make a fool of myself in public snorting and guffawing by myself to some of them. And if you have ever heard me laugh you know it is not a quiet thing -- especially when I am really amused. An old roommate used to say it sounded like I was hyperventilating and I wish I could refute that. Second I have finally found the WD40 and a prying bar and got myself over to a lot of the other MS blogs that my lazy self has been meaning to for awhile. I found a recent question on the Carnival Of MS Bloggers at http://brassandivory.blogspot.com to be very thought provoking. The lovely and multi-talented Lisa that runs that blog (not sure if she came up with the question or not. My vision is "spotty" right now so I can't always read every word -- bless all holy buttons for spell checker!) asked what you would do if you were not afraid. What wouldn't I do?! I would scratch the inside of my nose in public if need be. I would tell some one with cat box breath to eat a friggin tic tac. I would meet the eyes of people in public and not worry about the reasons for why they are looking at me. I would skip (or try, can't really skip these days) and sing, "Weeeeeeeee're off to see the Wizard, the wonderful Wizard of Oz!" through the stores. I would contact some people from my past and tell them what they meant/mean to me and not be afraid of their reaction. Oh, the things I could do if only I didn't have that nagging fear that screeches in my head, "Their all gonna laugh at you!" like the line from the Carrie movie. Oh well, it is rather late in the day to start working on all of this. I will think of it tomorrow. (I loves me some Gone With The Wind. Trying to talk Princess into being Scarlett O'Hara for Halloween but she wants to be a boring old witch.)

Is This Day Over Yet?!

I don't post twice in a day too often, but today I have to make an exception. I have had a pretty rotten string of luck today and I hope if I get it all out tonight I can wake up and start fresh tomorrow. For some reason August seems to be my bad luck month. I don't know if anyone else has bad luck months, but I definitely do -- and no, I was diagnosed in March, but I am 99.9973% positive that my MS probably fired up in an August from ye olde days. Here is my day, I hope it makes some one feel better if they have had a bad day to know that I am a total bumbling fool:

This morning I got up to let dogs in/out depending on where they decided to spend the night. Big dog slept in my room, little dog stayed out to tear apart my bag of potting soil all over the porch, which was then rained on and made a big slippery mess that I nearly fell in and gave both dogs and I muddy feet that were tracked all over my clean kitchen floor. I have not been able to locate my mop so all floor cleaning is done on hands and knees by me. I hope my mop sees my "lost" posters and comes home to me. I really miss that mop.

I go to brush my teeth and I take a mouthful of mouthwash and get one tiny drop down the wrong pipe making me choke and almost get half of it in the sink. The rest was sprayed all over the sink and mirror. I put deodorant on my toothbrush by mistake and had to scrub the crud out of my toothbrush and the top to the Sunday compartment on my pill dispenser decided to run away today, presumably to join my misunderstood mop, spilling several pills down the sink drain.

I go to get my shirt out of the dryer and I step on a really big bolt in the arch on my foot, that most tender and sensitive of areas, and let forth a string of naughty words that would shame a more delicate flower than myself. I could only find this uncomfortable bra (the rest are probably in the dryer but I lost interest in the contents of the dryer to the pain in my foot) and bloomers that have unraveling elastic, which I have snapped myself with several times today -- I can never seem to get it all off of there. I didn't realize the stains didn't come out of my shirt until I was too far to go back, so I look like a slob.

At the infusion center it was "Don't Take A Shower Day" and packed more than ever. The only chair left when I got there was one that was all automated but was broken. Both my neighbors, in the true spirit of the day, came prepared. The one to my right was asleep and snoring loudly, and to my left was a talker with very bad palsy. I only mention the palsy because of what happened next. There was only one nurse on when I showed up, the other at lunch. So while said nurse was trying to start my IV, Talker decided he needed his soda right now! He kept saying her name and she kept repeating, "You have to give me a minute." He got his soda, which was new and almost completely full, got the lid off, took a small drink, and then held on to it with all the palsy he had in him. I saw all this because I was looking in his direction while getting the IV started (I have to look away) otherwise I would have helped him. He had the lid off and was shaking that soda until it foamed like a mentos was dropped in it, getting me and him soaked. He didn't apologize, just kept saying the nurse's name but now saying he needed a towel. I found out later that him mom works there and he is very used to having everything revolve around him -- he will run over anyone in his way way without warning and thinks it a hot joke. I don't think hitting the nurses with a motorized wheelchair is a real knee-slapper, but maybe I am just a Negative Nancy.

I burnt the frozen pizza that was my dinner. Spilled my water and broke my favorite glass. Slipped on the mud on the back porch again and forgot about the Sunday compartment again but only lost one pill this time. Now I am raising the white flag and am going to bed -- hopefully I get there safely and I am not getting up unless it is officially 12:00 am or later. Sleep sweet all.

On My Mind

Update II: My readers are the smartest, most informed readers EVER! Your comments made me feel much better while showing me how little research I did on this subject. I was really upset that 2 new cases of PML happened that I don't think I took the time to look into it all, as I should have done. But thank goodness you had the calmness of nerves and clarity of mind to do your homework. All I can say is, bless your buttons!


Update: The whole infusion center was buzzing with this subject and the general consensus was exactly as the comment says on here. The most interesting part of all this was how many different ways people say Tysabri. Tie-sob-reee, Tay-sab-reee and so on, everyone sticking to their own favorite way of saying it regardless of how the other person in the conversation was saying it.


I have so many things I could talk about (as always) but right now I have to get this off my mind so I can move on. I was reading on the NMSS website that there have been 2 new cases of PML in people doing Tysabri. In Europe 2 men who had each been on Tysabri for over a year started having major neurological problems that were not consistent with MS. *Sigh* I had hopes that there would never be another problem with Tysabri and that I would spend the rest of my life happily on it; but now I feel like Tysabri is an endangered species. The men went through a process, which I can't remember the name for right now, to get all the Tysabri out of their systems and did a bout of steroids to try to lessen the attack. They had areas of major damage in their brains consistent with PML, and there is no known medicine to help combat PML. For a little while there, when it looked like Tysabri only brought about PML with the help of another immunosuppressent, the odds of getting PML became very small. Now they are back to about 1 in 1000. That doesn't worry me. I would rather get PML than not be on Tysabri, but I am afraid I may not have that choice. I am off to do Tysabri today, (damn the torpedoes!) and take my chances. In the words of Emily Bronte, "No coward soul is mine."

Everyone Has A Right To My Opinion

I am not a discriminatory person by nature and this disease has made me even less so -- having been discriminated against made me take a solemn vow to never ever discriminate against anyone for any reason. I don't mind anyone else's opinion, however contrary to my own. I don't mind people disagreeing with how I handle this disease, the things I talk about or the fact that I will only use assistive devices that have been spruced up so they don't look so daunting. I don't ever want to fit the public's stereotype for a person with MS -- I saw something on the news about MS recently and they showed a random person with MS getting help getting out of his wheelchair and assistance walking like it was the norm for people with MS. I don't even mind if you don't like my personal appearance, which makes me think of something that used to really irritate me. I have short hair. It is just a fact. I cut my hair off at 19 and have never regretted it. I don't mind others' long hair, I just do not grow luxurious locks. I grow something akin to the hair on a camel's butt -- coarse, unruly, unmanageable. Short hair is easier to let do its own thing. It doesn't matter that I have 57 cowlicks all conflicting with each other, or that I have a natural wave that makes it almost impossible to keep my hair down. I let it do its own thing and gave up trying to tame it long ago. Many years ago, when I was still single, I was with my roommate at a bar; she was drunk and having a rip snortin' time so I just sat back and watched the clock, willing it to move faster so I could go home and go to bed. A guy came up to me and flatly told me that he didn't like girls with short hair. I don't know what response he wanted, but I just as flatly told him I didn't like guys with small dicks. He actually hung around me the rest of the night and kept talking long after I stopped responding. I don't know if he was trying to make me start growing my hair out or what, but I was not interested in changing myself for anyone. I would see him out from time to time and he always wanted to talk to me, but I would never utter even a grunt to anything he said. I ignored him so completely, it shocked me he kept trying to talk to me. I have some pictures from a bachelorette party and he is sitting near me, looking at me and I am turned away talking to someone else. As far as stupid obtuseness goes, he is the best example I have ever seen.

So what was the point of that story? I'm not sure. Best I can figure out is that I come on here to offer my point of view and I enjoy others' opinions. I never expected this blog to really go anywhere, I just wanted a place where I could speak my mind. I know everyone is not like me. Some people want to be serious about MS and never laugh at the more ridiculous things about it. I run into that a lot. When I said I wanted a T-shirt that said (on the front) "Let MS get" (on the back) "UP YOURS!" most of the group laughed, a few people had looks of shocked horror that I could be so irreverent about MS. After being diagnosed (and to this day) I only wanted to talk about the realities of having MS -- but nobody wanted to talk about that. I wanted to know if some things were normal or not; and I was surprised by how many MSers were not very informed. At one walk a guy who had MS for over 20 years and was in a wheelchair, would not believe me that higher doses of interferons put one at a higher risk for depression. When the Rebif lady came over he asked her, in a tone of voice like it was the silliest thing he had ever heard. She admitted I was right and he wheeled his pompous ass away from me as fast as he could. So I guess I am saying that it is nice to be able to say my piece and have it appreciated. Sorry it took me so long to get to the point, sometimes I just got lots to say.

It Wasn't Funny At The Time, But...

This morning I woke up with a bladder so full and so threatening to empty its contents anywhere if I didn't rush it to the toilet that it brought back a memory that didn't amuse me at the time, but I find a little funny now. My bladder, as I may have mentioned before, gives me notice only when it is very full and I have about 5 minutes to get it to a place to release or it will take the choice from me and just do it itself. This lovely habit of my bladder has caused me some mild embarrassment in the past and I foresee many laughs with it in the future over this habit of his/hers (?). It also has a strange propensity to make my teeth hurt when it is really full and on the verge of release, which, strange as it sounds, is a good barometer of how much time I have left. The more my teeth start to hurt the less time I have, until I get to a good place to let go and my teeth return to normal. I wish I could say that I always make it to the proper place to do such things, but I can't. I am sure my big white arse has scared many a farmer when I had to pull over on the side of the road and drop my pants. Sometimes I have a little time to actually walk a ways from the road, others... not so much. One time I had to pee next to a dead fox with ticks crawling all over it and I get the heebie-jeebies whenever I remember that sight.

I think it was the 3rd time I was doing the steroids for an attack that took my pelvis for almost 3 months and only gave me back a much less sensitive one in return, that the following events transpired in. I was in my room lounging on the bed like a Greek goddess waiting for grapes to be dropped down my throat, when my teeth started the now-familiar song and dance -- and Kumbya it ain't. I quickly got off the bed and tried to untangle my IV tubes to be able to haul my IV stand with me. But, alas, the tubes were so hopelessly tangled and my bladder so full, that I gave it a good yank, pulling out my IV and releasing my bladder in one irritated move. I'm not sure if it is the some of the meds I am on, but I tend to be a bit of a bleeder. Blood splattered across the small room and started dripping everywhere, down my clothes, all over the floor, even on the bed. I hit the nurse button, but they were busy that morning and it took them awhile to get to me, by which time it looked like I had slaughtered a pig and urinated while doing it. I have to admit that I was glad that the steroids were falling to the floor -- it was several days into the treatment and I was sick of them; I didn't want anymore of that crap in my body. The nurses gave me some scrubs to wear, untangled me, started a new IV, and let me walk to the gift shop to see if I couldn't find something less hospital-y to wear. The gift shop was closed and I was so irritated and embarrassed, that I took my IV stand outside into the courtyard and had a smoke. There is something so odd (to put it mildly) about seeing someone in hospital garb, hooked up to an IV and smoking, that even I do double takes when I see it. Even though I was ashamed and embarrassed at the time, I am not anymore. Now it amuses me when I remember what that room looked like and how I must have appeared when the nurse entered -- and to their credit that did not act like it was anything to be ashamed of. Nothing like the smell of blood and urine, and if I am going to wet myself, I want it to be in grand style like that was. I don't know how I will ever top that performance.

Member's Card

Update: Thanks for the comments! I had no idea that one could get an MS card, although I doubt it would be as much fun as my own. For some reason I really want that picture of me on it, like a passport. And I have visions of signing my name in huge block letters with crayon.

In this ongoing saga that is my life, I have recently run into a problem that I have discussed before -- I think, can't remember right now. Due to the decision of a &#$@ judge, I am still unable to afford to be alive, yet I am still carrying on. (Side note: There is no way I would do anything to myself right now and let the SSA off that easy. I refuse to back down and am determined to show them what one little (not that I am little, mind you. I am 5'10" barefoot.) crackpot can do. And when this is over I intend to donate my services to advocacy for those going through this same crap.) I recently was asked to provide proof that I have MS. Maybe I missed the day they were handing out membership cards -- I was probably napping or eating the peanut butter -- so I was somewhat dumbfounded as to what they wanted. The copy of my MRIs? The results of my spinal tap? Me to go through the Evoked Potentials for them? Show them my hang tag and the verifying paper that comes with it? And I couldn't help but wonder who would want to fake having Multiple Sclerosis?! It is not like it is cool to have it. It doesn't give you any leg up on anything. I am not now suddenly endowed with multiple talents to pave the way to riches and happiness. So why would I say I had it when I didn't? I can only suppose that the people who were asking for verification were used to people pulling out any excuse for why they do not/cannot work. My neurologist wrote a letter saying this person has MS, is under my care, on such and such meds and so on. I asked my sister if she thought that if I made a card for myself identifying that, yes, indeed, I do have MS, my neurologist would sign it. I am not sure if my neurologist would or not, but I have spent the better part of this morning working on a card for myself. I am not going to post personal info, but here is the rest. In case you haven't figured this out yet, if you do not understand, "tongue in cheek" this may not be for you. So with tongue firmly in cheek, here is what I have come up with so far:

(The picture above is the picture I am using for my Membership Card. I know, I am so photogenic. Don't hate me because I'm beautiful!)

Membership Card
This card verifies that the individual named herein is a member of the elite Multiple Sclerosis Club. The holder of this card is entitled to all the benefits of said Club, including but not limited to:
Using, “I have MS” as an excuse to not do what others want you to do that is beyond your abilities.
Using, “I have MS” to explain why you do not work if you are unfortunate enough to not be able to work.
Using, “I have MS” to weed out possible dates that may not be up to dealing with this disease.
Using, “I have MS” to justify why you have no balance if pulled over by law enforcement and cannot perform a field sobriety test.
Using, “I have MS” as a recognized reason for spending the majority of the day resting.