Status Report

Gimp's Log. Stardate, who knows? After attending a recent court hearing to determine whether or not I am able to work, I have been able to established that there are no intelligent life forms working for the Social Security Administration. Upon submitting my current status as a certified gimp and showing evidence that I am a deeply depressed/anxiety ridden/disturbed gimp, they still felt that I would be able to be a "bagger," of which I could not help but snigger at. These strange life forms felt that even though my right side is seriously impaired, I can't stand for very long, can't walk very far without support, cannot lift much weight if both hands are needed, and my vision is foggy and dim, I would still be able to bag their groceries. When shown that I would be unable to work even a month straight without calling in, they had to concede that maybe I would not be able to bag groceries. Due to the teleconferencing nature of this hearing, where both the judge and I were on TV screens, and with my short attention span, my focus wandered and I was more interested in the roundness of my face on TV. (Note to self: do not pursue a career in television.) Luckily for me the chairs were of an extremely hard and uncomfortable nature, which added to my leg cramps, overall stiffness and caused me to liss to the right side even more. If the chairs had been of the La-Z-Boy nature I would have been comfortable and looked better than I am. Adding up all the evidence I have been able to conclude that 60 to 90 days is a long time to wait to see what these... creatures final decision will be. As my observations showed limited practicality on their part, I can only hope for the best and not start looking for a job as a bagger -- especially as I am sure no employer wants a bundle of liability trying to bag groceries for their customers. This concludes my status report and unless proven otherwise I must stand by my original conclusion that the Social Security Administration only employes those that are shortsighted and always looking for a way to deny deny and hope they die.

Damaged Goods

About my second year after being diagnosed, when I still went to MS walks and such, (before I realized that I really didn't enjoy them) a woman, who is the head of the MS group in the town I lived in then, said something to me that stuck in my craw and has been lodged there ever since. While we were talking about this disease and all it encompasses, she said, "At least our husbands are still with us." Now, I can't speak for everyone, but the day I am thankful that any man "stays with me" is the day I start laying eggs and hatching my young. Yes, I have a disease that does not have a happy ending, but why should I settle for any man that will just stick around anyway? And I'll be a vermicious knid's uncle before I am grateful that he is with me. Frankly, that kind of 50's housewife mentality is so opposite to everything I believe in (and she was much older, so I had to cut her a teeny bit of slack -- she was probably raised to believe that crap) that I just can't relate. I refuse to settle regardless of what is wrong with me. I would rather be alone the rest of my life than have to be thankful to some man for gracing me with his presence. If a man cannot see past what is wrong with me and see what is right with me, I have no interest in him. And I certainly will not be tickled purple because some man showed some interest. If he thinks he is doing me a favor by looking past my disease, he can stuff his good intentions up his ol' wazoo. I hope no one with any disease (or any kind of physical problems) ever settles for someone just because he will let you worship him for being with you. I'm a dumb beeotch, but I ain't that dumb. Accept all of me, or leave me alone. Now if you'll excuse me I am off to hatch my young.

Is Hitler Ice Skating?

In general I don't like to speculate where someone goes after they die, but I feel that Hitler is a sure bet. To my overwhelming shock/surprise/elation I am finally going to get my day in court to argue whether my disease is disabling or not. I go to court in 9 days, and I am as calm and relaxed as an iron bar. Due to the vast number of people filing for disability, I will be doing my court date via satellite with a judge in CA. I was reading about the average time it takes to get a court date, and I think it was somewhere around 550 days. I am over 800 right now. They said they are trying to get to the requests that have been pending the longest, which should have moved me up a little more, but what do I know? I was also reading about the whole disability process and some one who had worked for the claims department said it was all about, "deny deny and hope they die." While that makes me mad, I think there is a lot of truth to it. I went through the first 2 denials as quickly as possible because I just wanted to get to the point where I could get a lawyer and get this thing moving. I filed for a court hearing in March of '06, and am finally getting my day in court. I have been fighting disability for over 3 and a half years! (!!!!!) If you are not one of the few that has such a mild disease that it hardly, if ever, affects you, I would suggest filing for disability ASAP. It is such a llllllooooooonnnnnngggggg process that you will need to be able to wait and try to find a way to survive. I feel like it is waiting game, they want to see how tenacious you are and see who will give up first. But they are gambling with the wrong crackpot here. I know I have a legitimate claim and I am not going to just gimp away from this. Even the lady in the SSI office told me to not drop the ball on this. She said they would deny me and try to drag it out so that I would let it go, but not to give up because MS is a progressive neurological disease (I already knew this, but she was so kind and the advice was so welcome, especially coming from some one who worked for Social Security, that I thanked her as warmly as I could). So after this long and frustrating wait, it is finally nearing an end, and all I can think of is Hitler trying to find a partner so he can enter the pairs competition.

Side Note: One of the best parts of this whole crappy thing, is the jobs they come back with that you can still do. They told me that I was still able to work in retail. Never mind that my balance is off kilter, or that my right leg is numb and stiff so I limp, or that I can't walk very far without some kind of support, and my vision has "lost acuity," or that no employer would want me because I am a gimping liability, I can still do retail work. Whew! Glad they know more about my physical condition than my neurologist.

Gag Me With A Spoon

I must be a glutton for punishment; there is just no other good explanation for it. Every now and then I venture out of my dark hole to mingle with other MSers and it has never failed to irritate the shitakii out of me. I don't know why I do it. I think I am still holding out hope that I will find someone like me, someone who isn't pooping out rainbows and unicorns over having MS. Since being diagnosed with MS, some 3.5 years ago, I have only wanted to talk to some one about MS and all its implications realistically. Alas, my search continues. It seems that all I find are those who want to make it seem better than it is and sweep all the bad under the rug, which I can't help but think that must be one big rug. I'm not saying it is all horrible, or that it is the worst thing in the world, but why can't we talk about the negative once in awhile? I want to talk to those who have hideous, overwhelming depression that requires large amount of antidepressants, like me. Or those whose MS has been so aggressive that they have hardly had a chance to take a breath between attacks and have never recovered fully from any attack. Where are those whose life as they knew it was ripped away and they are still trying to piece together a life out of the tattered remains? I want to mingle with those who are willing to cancel that mattress order because we are not going to take this lying down. I want to do the things that I am not supposed to do; blow the lid off of anyone's assumptions about what a person with MS is supposed to be and be the opposite of what they expect. I don't want to link arms and sing Kumbaya. I want to sing, "I hate everything about you" with like-minded MSers. Being a true child of the 80's, it makes me want to spout off a bunch of uncool quips from that golden era, hence the name of this post. The only good thing about all this is that it fires me up and reminds me to keep up the good fight and continue not being what people think of when they think of MS. Now I must go gimp through some stores and tell the people who ask what I did to my leg that I have explosive diarrhea and if I don't lean to one side I'll sh*t my pants. Hope your day is as good as mine promises to be.

Who Needs Martha Stewart When You Have MS?

I didn't go to the MS walk this year. I had several very good reasons why I skipped it: 1. Every time I go I get annoyed and/or frustrated by the people who push past rudely to get to the free stuff or don't move an inch when you say, "Excuse me." I'm glad people want to support MS stuff, but if they are there to help a good cause, why are they so rude to those of us suffering from the reason for the walk? I get irritated fighting the crowd and jostling for a chance to go to a booth. B. Last year when I went, I saw 2 ladies that the year before were doing well, but that year one had a trach because she needed the direst oxygen due to a really bad attack, and the other was in a wheelchair and very confused -- unable to follow a basic conversation. This scares me and saddens me very much. Quatro: I do not need anymore MS stuff.

When I was first diagnosed I wore MS shirts all the time so people would know why I was gimping around and burying my face into everything to be able to see it. Now, almost 3.5 years later, I no longer feel the need to tell anyone anything. I am sick to death of all this MS crap I have everywhere. I hate having people come to my house and feel like they entered a quarantined sick person's house. I am trying to put MS second in my life and not let it define me, but it is a stubborn second fiddle that wants to intrude in every facet of my life. I am trying to get away from decorating my house in MS decor, but the free stuff you get from everything makes it hard. I have, in no particular order, a gaggle of MS T-shirts that we now use mainly for sleep shirts. I say "we" because my little sister, Princess and I all wear them and could probably wear them every night for a week and still have clean ones left. I have an MSAA mouse pad that I don't use, I prefer my Spongebob one. I get 2 calendars every year, from NMSS and MSAA and I get very irritable by all the inspiring quotes on them. So much so that they are relegated to areas that I don't have to see them too much. I get the planners every year, the ones where you can track all your symptoms and problems on, which I don't use too often, I prefer a plain notebook. I have a Copaxone and Avonex carry bags that could be handy for travel to stuff books into. I have Copaxone plastic meds containers that I keep colored pencils in. I ditched the 7 day supply one, it was too small to be of use for me. I have about 50 styrofoam coolers that my meds were delivered in that my husband uses for his camping trips and which we give to anyone who needs a cheap cooler that no one cares what happens to. In my freezer are countless gel packs, some even have Copaxone emblazoned on them, which come in handy whenever a kid hurts their mouth. I have Rebif and Copaxone sticky notes that have taken over my life. No matter how many sticky messages I leave, they seem to multiply like cockroaches when no one is looking. I have pens for every DMD and MS society you can think of, some with thick places that you hold on to for shaky hands. I have a Betaseron first aid kit with a handy rope to wear around my neck, which will never happen in this life. I even have a Rebif mini fan with a cord to keep it around my neck and handy at all times. I wouldn't mind using this, but my nieces and nephews love it so much I hardly ever see it. I have plastic cups and mugs that scream about MS and I only use when all else is dirty. I have an Avonex water jug that could hold half the Platte if need be. Somewhere is a Copaxone Walkman with earphones that I have never used. I have an insulated Copaxone water bottle that I use in the back yard when in the pool. I have Rebif sunscreen and Copaxone chapstick. I have magnets, magnets, magnets, with the major DMD companies' numbers on them and ones to the special pharmacy for my special meds because I am special, and I mean that in an I-should-be-wearing-a-helmet kind of way. I would love to be classy and decorate my house in Martha Stewart, but I have a different theme in my house: Multiple Sclerosis. At least they are both MS but one is sold at K-Mart.

I'm Baaaaaaack!

Did you miss me? Because I missed you, yes every last one of you. Your beautiful smile, lovely eyes, gentle touch... oh wait, wrong website. I mean, I never go to websites like that! I am an upstanding person of strong values who would never soil my pure mind with such fabulous trash as that. Speaking of such, I ran into a profile on myspace that went on and on about how the Bible is their favorite book and they were looking for someone of similar values yet he was a swinger. Now I am not sure exactly how that all works, but I am pretty sure the Bible does not condone swinging. I haven't read the Bible for a few years (yes, I have read the whole Bible several times) but from what I remember, swingers seems to be the opposite of what the Bible is about. But I have been wrong before. There is nothing I love more than hypocrisy and irony, they are the bread and butter of my sorry life, so to not make a comment of some of this stuff is really hard for me. My little sister said I need to make a profile for myself that I can use just to comment of these types of things. I even have a great name picked out, "Butt Plug." It has such a nice ring to it. So if you get some snarky comments from a Butt Plug, that would be me. But if you do not try to portray yourself as holier-than-thou while having things that do not add up with that attitude, you will be safe from my venom.

Yesterday was my Barfday; I turned 34. That is no secret, which is a good thing because if it was it would be the worst kept secret in Nebraska. All day yesterday, everywhere we went, Princess went on and on about how it was my birthday and she could not believe I was 34. Wow, 34! Isn't it crazy that I am now 34?! That makes me almost 3.5 times older than her. How does it feel to be 34? I am getting so old (to a 10 year old). Who could believe that I can be 34 and not need an oxygen tank, walker, and a special chair that dumps my ass out of it for me? Personally, I have not found my 30's to be that bad and I do not think 30's is old, but what do I know? I need a Boy Scout to help my ancient arse across the street now. Other than that nothing new to report here. We are up to our eyeballs in boxes and frankly, my dears, I am sick to death of unpacking all my junk. My little sister said the next time she moves she is only taking a change of clothes and a toothbrush... or maybe just buy the toothbrush later. I have to agree with that. You never realize how much crap you have amassed until you have to move it all, especially when you move into a smaller house. So there is the Blindbeard/Butt Plug update. Its great to be back and I need to get to your blogs and see how you are doing. Hopefully better than me in my messy house and one-foot-in-the-grave-and-the-other-on-a-banana-peel self.

Forced Vaycay

Due to my recent move back to my home town, I do not have internet in my new home yet. I will be getting it on the 22nd, so until then try to amuse yourself. I have no worries about lack of amusements, there are plenty of fabulous sources of entertainment on here. I will be back on the 22nd, until then, don't you stop being adorable!