Sunday, July 27, 2008

To Grandmother's House I Go

Dear Readers,

I will be going to the fabulous state of Michigan to visit my aged grandmother, who is 92 or 93 -- I can never remember. I only know that my mother's family lives in a tiny town that can boast 1 gas station, 1 grocery store stocked with only one brand name or a generic (no, seriously. You can get Ruffles or the white bag with black writing that says, "CHIPS." And you pay out the arse for everything because they know you have no other choice.), and 1 ice cream shop. It is near where Malcolm X grew up, which is great because I love his autobiography, and about 1.5 hours from Detroit. I will be spending the next week in the land of no Internet, with nothing to do but listen to my grandmother tell me about the bible -- her favorite subject. Honestly, I would rather stay home but my grandmother lives alone, is going blind and enjoys her family visiting so much that I feel guilty if I don't go. I hope your week is a bazillion times better than mine. I am off to be schooled in all things bible and God, eat too much ice cream because there is nothing else to do, and shake my fist at the bastards that fleece the customers of that small town. The only good thing is the great rocks and fossils in Michigan. We have found arrowheads before and we collect so many rocks each year that we can barely fit our luggage in at the end of vacation. I'll be back in about a week,

Saturday, July 26, 2008

Non-MS Related

I need a moment of humor right now. I am feeling so stressed that it is easy for me to forget about the rest of life. So in that spirit, I am going to post something I posted on my other blog that still amuses me. It is relevant again because Princess is having friends over to spend the night and the post still makes me laugh -- maybe because it is too true. Anyway, I hope you enjoy this as much as I did/do. Without further ado, I present to you a break from all things MS and negative:

A New Barbie Movie

What is it about kids that if you are not standing over them with a taser they won't shower, brush their hair, or practice basic dental hygiene? Princess had a friend over this weekend and between the 2 of them my house was not fresh. They complained that I kept my house too cold, but I could not bear to turn up the heat and risk them becoming more greasy and sweaty. They were playing Barbies and the storyline they made up was too much fun for me to ignore. So here is their storyline with a little help from me:

Barbie In Pungent Princess
By Princess and Friend

Barbie: Oh, Ken, gazing at the moon with you is soooo romantical!

Ken: I know, Barbie. I bet if we wiped the crusties from our eyes the moon would be even more beautiful!

Barbie: Excuse me, Ken, I have an itchy booger that I must pick.

Ken: You know, Barbie, some people use a kneenex to pick their nose! Isn't that silly?!

Barbie: How strange! I just flick them off into space and hope they don't land on the wall and get me in trouble! I hate having to clean them off.

Ken: Blame it on Kelly, that is what I do!

Barbie: Oh, Ken, you are so smart and wonderful! And I love moon gazing near an onion factory with you!

Ken: That's not an onion factory you're smelling, its me! I don't bother to wear deodorant.

Barbie: Me either! I don't bathe much and find deodorant is too easy to forget to put on.

Ken: Barbie, lets hold hands and run into the ocean together!

Barbie: Oh, Ken, we can't! Remember last time we created an oil spill and killed off all the fish creating widespread famine amongst sea gulls, who were then forced to eat their young and we got in trouble and are now banned from any large body of water.

Ken: Oh, Barbie, that is why I love you! You are so smart even if your body is shaped like a wasp with a too tiny waist and bulging bust and hips! Let me run my fingers through those greasy strings that you call hair!

Barbie: Oh, Ken, you can't! I like having birds nest in my hair and I am afraid you will bother them if you do!

Ken: You are right again, Barbie! I have several families of rats in my hair and do not want to disturb them either.

Barbie: Are you cold, Ken? Your teeth look woolly, like they have on thick sweaters!

Ken: No, Barbie, I don't brush my teeth unless someone forces me and even then I just eat a little toothpaste.

Barbie: Me too! Oh, Ken, the mingled stench of our body odors is making me light-headed! Lets go back into the house and turn the heat up to optimize our pungent aroma!

Ken: Lets hold hands and run into the house, Barbie!

And off they run into a smelly sunset together. I probably don't have to point out that I was the only one amused by all this. I would have added things about stinky feet, rotten breath, hair-brush-phobia, wearing the same clothes day after day and so on but I had 2 stinky little girls who were not amused and threatening to come close to me. And even with my super human power to withstand gross things, that was too much for me.

*Author's Note: Every time I read this is it cracks me up all over again. I can just imagine how thick the melodrama was, their high-pitched voices waxing and waning over the "dramatic" parts, and, best of all, their irritation with me over my amusement at their expense. Who said having kids was not rewarding? (Okay, it was me, but there are a few perks.)

Monday, July 21, 2008

I'll Bag Their Groceries!

I got the decision from my disability hearing and they decided that I am perfectly capable of bagging groceries still. I wanted to write about this yesterday, but I was so furious that I would only have spewed out obscenities and would have been incapable of having any kind of reasonable response. Now don't get my wrong, I am still angry but I want to share this enlightening experience so others may benefit from it. My family was concerned that I would try to off myself, but there is no way I am going to let Social Security win. I do not feel that I am out of line asking for disability and if they think I am just going to give up the fight, they have gambled with the wrong gimpy crackpot! It only brings out the stubborn mule in me and makes me that much more determined. I have now girded my loins (a bygone phrase, but one that is too good to let die out) for a long bitter battle. Okay, enough of my battle cry, here are the highlights of the judge's decision:

My MS is mild and under control. Where have I been? I am so glad this judge told me this! I thought 5-6 attacks in the first year and having to do the steroids 4 times in 10 months might have been the opposite of mild. And what do my neurologists know? Even though my first neurologist is a highly respected doctor and one who SS has sent patients to for evaluation, they still know better than him. He wanted me to avoid any kind of stress due to the aggressiveness of my MS and said that he felt if we didn't get my MS under control I would probably enter the secondary progressive stage within 2-3 years. Also that fact that I never recover completely from my attacks worried him. Even on Tysabri I'm still having a, albeit more slowly, decline. It was also not considered that Tysabri is a last resort for treatment; that you have to fail or be unable to tolerate any other treatment to get Tysabri. But what are facts to the SSA?

A psychiatric nurse's records and opinions are not good enough. Even though my psych nurse was recommend to me by 2 different doctors, her records and diagnoses were inadmissible because she is not a doctor, so all that was thrown out. She can write prescriptions and is highly respected but her opinion is not good enough for the SSA, which leads me into the next one.

My depression was not considered because it did not fall into their strict criteria. Okay, I am going to be 100% honest here. I have had 2 major "depressive episodes" (they are not called "nervous breakdowns" anymore) but they were not considered because they have to last at least 2 weeks and of be of such severity that I am unable to function in even the most basic way, ie bathing, eating (which I didn't do for a week during my first nervous breakdown) etcetera. One must lose touch with reality and descend into the depths of believing their cucumbers look better in spandex than they do for the episode to be recognized. Even though I cut my wrists and had to spend 5 days in a psych hospital, it was not considered bad enough because I wasn't suicidal for at least 2 weeks. And because my psych nurse practitioner is not a doctor, all her records of my depression were thrown out and they only recognized that I cut my wrists once (heck, that is such a minor thing!) and that I take psych meds that they deemed to be working miracles for me. Good thing they let me know that! I thought fighting with depression and anxiety daily was pretty major, but I am just one little crackpot who doesn't know her own problems as well as the SSA.

I do not have a record of my functional capacity. Herein lies my biggest mistake. I never had anyone do that functional capacity test (is that what it is called? For some reason I can't remember right now.) where they test how long you can sit, stand, walk, kneel, crawl, how many times you can lift something, how much weight you can repetitively lift, how much repetitive motions you can do, and so on. I never wanted to do it because I knew it would wipe me out for the rest of the day and I hate that feeling. That is where I messed up. I now have on my very short list of things to do that stupid evaluation, that and finding a psych doctor to confirm what I already know about my mental instability.

Even though my future prospects are not good and at most I could only work a 6 hour day, per SSA, I can still bag groceries. In the report the judge concedes that my future prognosis is dim and my continued deterioration is highly probably, but I am still able to work 6 hour work days with accommodations and periods of rest. Wow. Where do I start with that one?! First, what employer would touch me? I am a limping liability. And would a grocery store would be willing to accommodate a 34 year old bagger that needs more rest breaks than her 16 year old co-workers? For some reason I don't think the offers would pour in. Second, how would I ever support myself doing that? Tysabri alone is over $50,000 a year (when the infusion center charges are added in) and then add my 9 other meds into the mix and I just don't see me making it.

I think one of my biggest mistakes was trying to downplay my MS and assuming that they would understand that when I said I have overwhelming fatigue, limited sensation on my right side, have lost visual acuity in both eyes, have optic neuritis in my left eye, pain in limbs, face (TN), and around my left eye that they didn't need me to spell out what that all added up to. The judge even says that I am a believable person and came across as credible, yet all my symptoms from my MS are not documented in the way that he would recognize them. Again, my BIGGEST mistake of not going through the ordeal of testing my abilities bit me in the behind. I would love to bag his groceries and replace his Preparation H with battery acid, his bottled water with douche bottles of Low Tide scent, his pimple cream with Vagisil... are you sensing a theme here? But I'm not bitter at all.

Saturday, July 19, 2008

I Hope You Got The Wrong Impression

What is it about a hospital atmosphere that makes me so tired I can barely keep awake? I could go in with a pot of coffee pumping up my heart rate, a bag of chocolate covered coffee beans (YUM!), and drink Mountain Dews until my bladder fails, yet still feel like I am becoming Rip Van Winkle the minute I am in there. Yesterday, while getting my Tysabri infusion and fighting off the urge to hibernate for the next 12 years, a woman came in for her Tysabri infusion and brought her 14 year old daughter with her. I was busy trying to figure out how to change the ring tone on my cell phone (still new to them and hopelessly confused by all this new fangled technology) and doodling in my Hello Kitty notebook with this great pen they had in the infusion center, which I am almost ashamed to admit that I took. In my defense it was a pen advertising a medicine and they didn't care about it because they have about 52,784 others like it. Anyhoo, back to my story. I'm doodling away when a doctor came in to see said woman and her daughter. The daughter is suffering from extreme depression and anxiety from worry about her mother's future and worrying that she will get the MS too -- so worried, in fact, that she is living in a group home for kids with behavioral/mental problems. Mostly she was scared of getting MS, and was so high strung she sat on the edge of the chair and fidgeted the whole time. (I have to throw in here that I was wondering how bad her mother was to make her so scared of getting MS. I mean, c'mon! Yeah, MS sucks but it is not worth ruining your life worrying about.) The doctor was trying to help calm her fears by telling her that her chances of getting MS are so slim that she need not worry. The mom, that lots of things will help, like exercise and eating right -- said while pulling out a gallon baggie full of candy bars and eating several. I normally try not to butt into conversations but the infusion center is not that big and we were sitting pretty close together, so I had to interject -- all in the hopes of calming the poor girls nerves -- that one of the things about many people with MS is that we have vitamin D deficiencies and to make sure she got plenty of vitamin D. The doctor played down what I had said, as if it were of not much consequence and just reiterated the slim chances, blah blah blah. (I have to say that the mother seemed like a very kind and nice woman. She and I discussed our mutual dislike of support groups, our hatred of physical therapy, and the fact that we have the same neurologist, whom we both love.) I just wanted to help the poor girl; it pains me to see some one so young with so much anxiety and depression, so I had to stop doodling hearts and unicorns for Hello Kitty to ride on -- again -- and offer my two cents. I told them that studies have shown that if a person gets plenty (not an overdose, just recommended amount) of vitamin D while in the teen/young adult years, it greatly reduces the chances of them getting MS and that in my family we have been starting all my nieces and nephews on supplements to hopefully keep them from getting MS. The doctor looked at me with surprise and, dast I say (I dast), respect, and he said that I was "absolutely right."

The whole point of the above long-winded story is that I enjoy people having the wrong impression of me. I would rather be underestimated any day than be overestimated and shown to be an ijit as soon as I open my mouth to speak. I know I come across as a somewhat vapid (Hello Kitty? What am I, 12?! But I can't help my natural attraction to pink fluffy things.) and shallow person without any deep thoughts to speak of, but I like it that way. I don't want people to know that I have read every book on MS that I could get my hands on, even the technical ones meant for those in the medical profession, sometimes even downloading different articles and studies in medical journals, just so I can know the ins and outs of the disease I have. The only reason I am telling you is because we will probably never bump into each other so my secret is safe with you; plus I would trust you with my life because you would never steal a great pen from some place, unlike me. When people see me stumbling around, I don't want them to suspect that I just finished reading a comprehensive study of life and social conditions in the 13th through the 18th centuries. Or that I read about the different tenets of the major religions of the world for lite reading. I am perfectly content giving the wrong impression and have no plans to ever change that. I enjoy delving into the history of MS and how Charcot came about his findings and what he observed in his clinical practice; I just don't want anyone to suspect that I look into any book besides the Dick And Jane series. Now if you'll excuse me, I must go draw Hello Kitty another unicorn to ride over the rainbow. Hope this long post didn't make you go Rip Van Winkle on me.

Thursday, July 17, 2008

Boiled Noodle

*Author's Note: I am sorry that I assumed that all MSers have a certain gait. I did not mean to be a small minded bigot when I said that. I recently attended an MS function where we all got together with our families and I could pick out who had MS there, hence my conceited assumption that all of us walk a certain way. I can only say that all my brain damage was showing when I made that remark. And for those of you who are lucky enough to not have a gait disturbance, I think I hate you! I walk like the ground is uneven so even when I try to look "normal" (albeit a very rare occurrence) it gives me away every time. I will get over my shame in time -- okay, I'm over it. Back to my usual nonsense. One last thing, I lived in Houston for awhile, so I can sympathize with the comment about the Florida heat. You have my pity and respect that you can thrive in that humidity.

Due to the desert-like temperatures and ungodly humidity, I have been giving some serious thought to moving to the Northwest Territories. Yes, the cold makes me a little more stiff but I think that is preferable to feeling like a boiled noodle the whole summer. This heat makes me so lethargic that some days it is too much for me to even sit up without some kind of support. I feel like a floaty that someone has torn a hole in and all my air has drained out. Or, as the title of this post says, a noodle that has been thoroughly boiled and just drapes into whatever position you put it in; and the position I have been left in is lolling on the couch like some goddess waiting for someone to come by and drop grapes into my mouth. (Hopefully the red ones -- I'm not fond of the green ones.) Maybe I should see if I could join an Eskimo family and build myself a beautiful, COLD igloo. I haven't decided which would be better yet, but I must admit that I am leaning toward the Northwest Territories due to the fact that I am a weenie and do not think I could hunt seal or whale. I don't mind the cold at all. In fact, I never wear a coat in winter. If it is really cold I will wear a sweatshirt and maybe a scarf, but that is mostly because I adore scarves and winter hats, so I embrace any chance to wear them. I am never cold, and sometimes that makes me sad. I love the coats that look like something an old rancher would wear -- the leather with furry collar and cuffs; I even own one but I never wear it because I am never cold enough to. I am kind of curious if anyone else is like me and never gets cold. I know there are certain things that are almost always a given in MS, like heat bad, fatigue terrible, and our own special gait (I can tell an MSer from a mile away just by watching how they walk) but I am not sure the love of cold is as universal. I just know that I am NOT moving any further south because I do not enjoy being the last over boiled noodle in the pot. Wake me when fall is here.

Friday, July 11, 2008

I'm Melting

Ugh. I keep trying to get back on here, keep thinking about stuff I want to say (I have lots of stuff I need to say; if I die and I have said everything I have to say, I will die happy), keep thinking of new post ideas and wanting to update some of my profile. But this summer heat and humidity has reduced me to a pile of melty goo on the sofa. I don't even have the benefit of melting like the Wicked Witch Of The West, with some integrity and a great farewell line. I am like a pile of soft taffy left in a hot car. The heat of summer has to be the worst time of the year for MSers. I feel like I can barely move, even in the house with the air conditioning running at a refreshing 75. I think about going to my sister's house and swimming in her pool, but the effort it would take to get my fat arse into a swimsuit then get over there is more then my energy level. I feel like I could sleep my way through the summer and not miss a thing, which I wouldn't because I don't have the energy to do anything in this oppressive heat. Hopefully I will locate a spatula to get my blob buns off this couch and get back to my life. Then again maybe not. It is sooooooo hot and humid I just want to melt into the couch and not be bothered until the fall.

Wednesday, July 2, 2008

Love Me, Don't Judge Me

There is a good reason why I take it very personally when someone tries to tell me how I should feel or what I should be doing. I don't get angry easily and I don't care too much about what other think about me; but being human, I care very much about what I think about me. I'm sure you know this, but please bear with me as I reiterate some things that are pertinent to this story for anyone who may not have read my older posts. My diagnoses came as a complete shock, out of the blue, a horrible attack out of no where with very little warning. My early signs I shrugged off as nothing important -- depression, anxiety, a leg being numb from time to time etcetera etcetera. And in that first major attack I lost so much of my life that I valued: doing foster care (my neurologists do not want me to have even one kid because of the stress); working and having my own money; my general health, which had always been excellent; spending my time in the outdoors, fishing, camping, gardening. I cried for a couple of months but after a time when others were not crying as much, or were trying to show a brave face for me, I stopped sharing my pain with them, especially my family as they were just as upset (if not more so) than me. Mainly my mother because she is a nurse in a nursing home and cares for several MS patients that have had the disease for umpteen years without the benefits of the DMDs we have now, so she didn't want me to come to her work and see any of them in case it worried me more. After the first shock wore off I kept all my feelings to myself and put on a brave face for the world to see. This worked for quite awhile until my fourth round of steroids in less than 10 months. I had just celebrated (?) my first anniversary of being diagnosed and was finishing up my taper of steroids when it all came crashing in on me. I woke up that morning feeling strange. I don't have the correct words for it, I just know I felt so numb and dead inside that I wanted to take a knife and cut myself to see if I could feel it. I fought the feeling and ate breakfast and went grocery shopping, but all I could think of was writing a note to explain why I had to kill myself. I came home, wrote the note thinking it would get that out of my head and finding it didn't help and then I made a series of mistakes. I printed the note and put it on the counter in the kitchen, found an old rusty dry wall knife and a rusty dull razor blade and went to work on my wrists. Some where in the haze I was in, I had a feeling that it wasn't right so I called my mom. She in turn called 911 and my whole family, several police, firemen, and EMTs swarmed my house. I cut my wrists up and down and back and forth, crisscrossed and every which way I could. If those nasty rusty things were not so dull it would have been even uglier than it was. There was blood all over my clothes, the kitchen, and me. My memory becomes very hazy after I started cutting myself. I know I put my hands over my face and wouldn't look at anyone because I felt so worthless and useless that I couldn't look anyone in the eye. I ended up being tossed into the loony bin and had 5 days to cool my heels and think about what I had done. I had to go before the Mental Health Review Board to show that I was no longer a "mentally ill and dangerous person." They shackled me (as if I could run away!) and that damn note I wrote, that was meant only for family to see, was pulled out over and over and over again. I got so angry from always having to talk about it, I told one of the counselors to just publish it in the newspaper so the whole town could read it and talk about it. In the loony bin I decided that I was no longer going to pretend to be/feel anything that I am not. Nature has a way of healing us whether we think it will or not, and I decided that I was just going to be me and let nature do her thing. I will never, under any circumstances pretend to feel anything other than what I am feeling. I know it was the steroids combined with my hiding my true feelings that pushed me over the edge that day. That is why I don't like people telling me what to do or how to feel. I will get there in my own sweet time, and trying to force it is not healthy. Instead I am embracing my emotions and enjoying the way nature works on a damaged soul. I am intrigued by the healing process; it is such a myriad thing and so unpredictable. But in a life that is so routine I want to scream and run away some times, I welcome the ups and downs and realize that we all grieve in our own way, and it is always best to let nature do her thing and not let others tell you how you should be feeling. I wish I had known that earlier -- my wrists would be a lot prettier.