Saturday, August 30, 2008

Stoopid MS Symptoms

I have such a strange hodge-podge of different symptoms from my MS that I feel I need to share them. I know we all have weird things that are hard to explain or not "major" enough to contact our neurologists about, yet they are annoying just the same. There are the common things that most of us can relate to, then there are the things that seem like strange quirks. I'm having some strange quirks right now, so I want to share them in case someone else out there is having some of the same problems.

I have random itchy spots. I have itchy spots on both upper arms, a spot on my upper right chest, a few on my sides and on my mid thighs. They drive me crazy and make me itch and itch until the skin is torn up. I clipped off my nails so I could minimize the damage to my skin, but all I want to do is scratch myself bloody.

My right ear is twitchy and itchy, especially right behind it. I have to rub it every few minutes to make it calm down. I get these shocks around it and up into my hair line -- a twang and vibration that is hard to explain, yet really annoying. My little sister and I were shopping yesterday and I played with my right ear almost non-stop. Made me feel like I had a dirty ear that needed a finger in it at all times. And if I wear a hat it is worse. It intensifies the yucky feeling behind that ear and makes me dig up my hair until it looks like a tornado took off on the right side of my head.

I have facial tics that make me contort my face and make stupid faces. I know I've mentioned this before, but I find it really irritating and embarrassing. My forehead wrinkles than straightens out in quick succession, and around my nose is twitchy and likes to pinch in making me grimace (not to be confused with the guy who likes hamburgers). So I wander around in public grimacing and with my forehead working overtime -- not exactly the most attractive look.

I have trigeminal neuralgia that comes and goes. I will be good for most of the day and when I start getting tired my face starts to hurt. It is along the right side of my face into my jaw and teeth. When it is flaring up I don't want to move my face at all. I avoid talking, eating (too bad it isn't in full flare-up, I lost almost 10lbs the last time it was at full force) and anything that might touch my face, ie no makeup. Not sure if this is related to my TN or just MS in general, but I have decreased taste on the right side of my tongue. Does anyone else have that too? I wonder if it is more common than it seems -- I'm not sure I've ever read about decreased taste before. I might have and just forgot about it; my memory is not so hot some days.

I have a hard time getting my body into the correct positions in chairs. It seems like I can't remember how I am supposed to sit anymore. I shift and shift but can't find a comfortable position. I can't remember how I used to sit and it bothers me that in chairs I look like I have a poker up my wazoo. Sometimes in bed I will toss and toss trying to find the old way I used to sleep but can't find it. Somewhere along the line I lost the ability to figure out how my body used to be in repose and I'm not sure I'll ever find it again. I know that is not a major thing, but it is majorly irritating.

I could probably think of more things, but Princess had her cousin spend the night last night and they are wild and hyper this morning; distracting me with constant chatter and questions. This probably goes without saying but I'll say it anyway: I would love to hear about any strange symptoms that you have. After all misery does love company and I can't exactly send these wild girls to your house, which you should be very glad of -- they ate all the good food in the house.

Thursday, August 28, 2008

Plan B

*Author's Note: Wow. I have been in a foul mood the last few days and this blog shows it. I was interrupted while writing it, but am going to leave it as it is. We all have days where a black cloud hovers over our heads, and in the true Blindbeard spirit, I am going to post this and let the chips fall where they may. I have to admit that I rather enjoy those days from time to time. It feels good to be crabby once in awhile and vent the negativity the builds up in me. So without further ado, here is my blog.

Due to the fact that the employees of the SSA were all dropped on their heads as babies and forced to eat paint chips, I have had to come up with a back-up plan for when I can no longer afford to be alive -- and that day is looming. Besides my brilliant plan for filing a lawsuit against the SSA for ruining peoples' lives by dragging out the process and forcing people into poverty, I have come up with another way for me to survive. I pondered and pondered what I could do. I found out early on that I can get no public assistance (it was a dark day when I had to go see if I could get any help) because I have no children and the government has not declared me disabled yet. The requirements for public assistance, where I live, are that you need to fall below a certain income level, have kids and have been in this country for at least 90 days. I paid into the system for more than 15 years and I can get no help. Those who never paid into the system can squeeze out a kid, be here for at least 90 days and get money handed to them. Where is the justice in the "Justice System?!" But that is a different post; I want to talk about my Plan B, because it is inspired and pure genius!

I finally came up with the solution to my money problems. Where can a citizen of the good ol' U. S. of A. get the best medical care and decent representation? There are only 2 places that I know of, and I am considering both. First, is jail. I have been trying to think of an offense that would get me enough time in jail to get caught up on medical bills, while taking care of the ones I would need while in there, and get me a lawyer so I can have a voice. I do not want any violent crime or anything that would put me away for good, so this is a tough one. I would also need a tin cup because the whole time I am in there I intend to rattle the bars and loudly protest against the system that forced me to become a degenerate. I am enjoying the idea of sleeping all day, reading as much as I please, and b*tching so much they want to get rid of me. I want to stand before a judge and tell him/her exactly why I did what I did and offer no apologies. The biggest problem is what I could do to get there. I would appreciate any and all ideas for this. It cannot hurt another person in any way, yet still guarantee at least 30 days. My mom said they would take my tin cup from me, but I am prepared to take the fillings out of my teeth to fashion a new one if need be.

My second idea is going back to the psych ward. While in the psych ward I got a free MRI (to see if I had any lesions in the frontal lobes that could have caused my craziness), free meds (except Copaxone, they had never heard of it and couldn't order it quick enough for the short time I was there so I used my own from home) that they played around with the dosages of, and free bed and breakfast. I am not dying (HA! Get it?!) to go back there. They put me on Zyprexa (is that the correct word and spelling? I can't remember), which is an anti-psychotic med that increases unsteadiness and dizziness -- not the wisest choice for someone with MS. That only lasted 2 days because the neurologist came in (I chose a bad day to go crazy, right before the weekend so I was at the mercy of less-informed medical personal) and said that I was not psychotic, I was only suffering from a mood disorder secondary to MS. When they admitted me, they stripped me of EVERYTHING and made me enter the ward and do the admittance interview in a hospital gown; they even made me go in in a wheelchair, I was not even allowed to walk in by myself. They took my wedding band and my bra -- those are the two things that offend me the most. What am I going to do to myself with my wedding band? Scratch myself to death with the diamond? And my bra? Hang myself with it? Smother myself in the cups? Use it to start a ladder to escape their clutches? We were on the top floor of the hospital and only given one blanket; my bra could not have done much harm or made much of a ladder. And when I finally left, I was shackled and escorted by 2 sheriffs to my hearing in front of the mental health board. What did they think I was going to do, limp away from them? Go crazy and try to scratch them with my wedding band or strangle them with my bra? I do not want to go back, especially as I have a deep fear of them trying to keep me this time. I don't want to go back to the land of lukewarm showers and edible deodorant, which I was the only one who used, judging by the stench of my fellow crazies. You could eat the whole tube of toothpaste they gave you and the deodorant and maybe get indigestion. Maybe. The heat was way too hot for me so I draped myself over the furniture with little energy. I wanted a room to myself to keep cold, but no such luck. I shared with a woman with no top teeth -- which reminded me of a goat -- who was always cold and forever turning up the heat. She hated the group home she was in, so she drank bleach to get out of there. DRANK BLEACH! That blows my mind, and as much as she could get on my nerves by forever chattering, I had to give her my respect for being able to do such a thing. She was thrilled when her mom and boyfriend broke up because she wanted him to be her boyfriend so they could have another kid together. I just can't relate to that. It makes me sick, but she drank bleach so I let it go.

Tuesday, August 26, 2008

Don't Ask Don't Tell?

*Author's Note: I agree 100% with Lisa E.'s comment about taking a break from boys for awhile. I am not ready to share my life with anyone yet, but every once in awhile, my little sister's cooing lovey-dovey stuff gets to my black, shriveled heart. Besides, I am trying to break my personal record for Longest Time Without Sex. I am determined to do it and do not want to be tempted to throw my good start away. Don't get me wrong, I'm not going for a monk-like existence, I am a proud supporter of battery companies and feel I need no other companionship than what they power.

That has to be one of my favorite sayings of all time. It can be applied to almost anything, not just what it was originally intended for. Those words have been on my mind because I must be losing my mind. Lately I have been thinking about male companionship again. What is wrong with me?! I have no intentions of ever getting married again, but when I listen to my little sister and her boyfriend/fiance giggling and tittering together I start to think that maybe I need someone to coo and titter over. This is where the title of this post comes in: when do you tell someone that you have MS? My family agrees that I don't have to tell anyone anything, at least not right away. But I feel like it should be known up front to save everyone from the trouble of realizing later that they just can't handle it. My emotions are not easily touched so I'm not worried about my heart being hurt, more my pride than anything. As little as I care for others' opinions, it still mortifies me when I am treated like a diseased thing that should be quarantined. It is very hard to hide the way I walk, my spotty vision that makes me have to bob my head around to see anything, this darn fatigue that demands a long, luxurious nap everyday, the fact that I don't have a job, and I have no money. I'm not ashamed of having MS. I'm not ashamed of the way I walk or any of the other things I mentioned above. I have no control over these things and do not get to dictate the way my body functions these days. But I can't help wondering who would want to be with me?! Don't read into that as a sign of depression or anything like that; it is the MS part of me talking. The non-MS part of me knows that anyone worth their salt won't care, will be able to see beyond my physical problems and see the me that is still an immature, stubborn ass that is going to do as she pleases regardless of what they think. Its the MS part that makes me shy away from people and decide for them what they think of me -- a bad habit that I really need to break. My therapist told me to let people decide for themselves and not do it for them -- great advice that I am still working on.

The demise of my marriage has also left me scarred and scared of relationships. Everything I thought I knew about my husband was wrong and it left me feeling that I am a terrible judge of character to have been so blind to the early clues -- there must have been some that I missed and I keep going over and over things to see where I missed them. Hmmm, this reminds me of something that happened a few months ago. I talked my little sister into going with me to get my Tysabri done because it is such a boring 2 hours and company helps the time pass. She and I were talking about our marriages and how they fell apart. I don't air my dirty laundry in public, on here, yes, out and about, no. While I was saying that my getting MS was the beginning of the end for my marriage, 2 women and a man sitting near us exchanged looks like we had no idea of what a marriage was. Like we were silly children who did not take our vows seriously and took the easy way out. I wanted to tell them that they had no idea of what I had been through. Their pompous, uppity, snarky exchange of knowing looks could be stuffed up their rose scented, superior behinds. What I was not willing to say in a public place, but what I really wanted to say to them, was that the stress of my being diagnosed with a chronic, debilitating disease that drained our money while preventing me from bringing any in had a terrible ripple effect. My husband's alcoholism and violence increased while my ability to defend myself decreased. I know what my vows were -- I was there -- but why should I stay married because I made a vow, when he broke those vows and things were only getting worse? How could I trust my uncertain future to a man whose temper was touchy at best and was becoming more irrational daily? So if that makes me a person who doesn't understand marriage, so be it. I'm not going to lie, I went from not having to worry about money, spending as I pleased, a 4 bed 3 bath house with an in ground pool, a house 300 square feet bigger on just the first floor than this whole house combined, to a life with no money, worrying about the few dollars I do have, and if they will cover what is needed around here. But I gained something I have been missing for too long -- my self respect. I can't respect myself when I put up with the things my husband did. I'm embarrassed that I had to call the cops on him and he went to court for domestic violence. I'm not embarrassed that I called the cops, I'm embarrassed that I was in a marriage that went that way, if that makes sense. I'm ashamed of how long I stayed around and how many chances I gave him after he showed his true colors. I am no one's welcome mat and I made a solemn vow to myself that all relationships from now on are going to be on my terms and the first sign of something unacceptable is the end. I may be poor and living in a sub-par rental, but I can respect myself again and know that I did the right thing. And that is all that matters.

Sunday, August 24, 2008

The Blurred Line

Lately I have been pondering where exactly my disease fits within the accepted categories of Multiple Sclerosis (I know that doesn't have to be capitalized, but to me it is so prevalent in my life that it deserves the distinction of capital letters). I do not fit neatly into any of the 4 recognized types of MS and can't believe that I am the only one who has this problem.

Benign: Dare to dream! I envy those who fall into this category. I can't imagine this disease being so mild to be almost nonexistent. Wouldn't life be sweet if MS reared its ugly head so rarely as to be easily forgotten and not have the daily struggle to keep up with life? I just cannot relate to this at all.

Relapsing-Remitting: I am currently in this category but do not fit the general description of RRMS, which I will elaborate on further down.

Secondary Progressive: Who amongst us does not fear this? It scares me to think of steadily going down hill with little to no meds to help slow the decline. I hated Novantrone, and we all know it is a limited-time option. On Novantrone I was so sick I really thought I was going to die. I crawled to my computer to delete things I didn't want anyone else to ever see, drug my sick butt back into bed and laid there too sick to move for several days. I didn't lose a single hair, which irritated me beyond belief (I was ready to lose my hair so I could wear my mullet wig sideways in public). My neurologist said I was lucky and many people would envy my full head of unruly hair. I was stuck in the house for 2 weeks because I couldn't be around people -- the whole thing sucked eggs. I'm not sure I have the words for the horror I feel for Novantrone.

Primary Progressive: This is seen more is people who develop MS at an older age. Obviously, having been diagnosed at 30, I didn't fall into this category. I don't think there would be much gray area if one did. The only good thing about this (to me) is that it either is or is not and I am not. But those who do have it have my unending sympathy, empathy and every other -pathy that you can think of.

Here is where I get confused: The book I am reading right now, albeit sluggishly and between other more interesting books, breaks down the categories in a way new to me. The book was first published in 1988 and last updated in 2008. It seems practical and no nonsense, which is just how I like it, being a literal and detail orientated gimp. They give case studies and in one of them they note that the woman was having attacks and not fully recovering from them which moved her into SPMS category. If this is true than I am SP. I have never fully recovered from any attack and my attacks last weeks, sometimes months, which is another thing they say marks her as SP.

I can't remember where I saw/read this, but somewhere I ran across a controversial category called Relapsing-Progressive -- has anyone else heard of this? The criteria for said category fit me to a tee. Your baseline becomes progressively worse and you still have attacks. Even on Tysabri I am still having a slow breaking down. I have this constant nicking away at me that is usually so subtle I have to really think about when I first noticed it. I am interested in others' take on this. In the first year of being diagnosed, and having a very aggressive disease, I commented to my mom that I had a case of the, "galloping MS." I thought it was funny -- me being a history geek and enjoying applying outdated terms to modern things -- but it made my mom cry. So now I only refer to my "galloping MS" privately or to my neurologist. Maybe that should be a new category. I like it better than the other options.

Saturday, August 23, 2008

*Under Construction*

I am working on updating my blog and making it more accessible (a gimpy MSer joke there). I am working on tagging my posts so it is easier to get all the posts on a certain subject. I am not a technological type girl so it may be a slow process. I keep fiddle-farting with it all trying to make it work the way I want it to, so it may be awhile before I get it all put together in a way that will work with my OCD tendencies. Those of you who have nice, organized, easily navigateable blogs are a source of envy for me right now and I am working to bring myself up to those standards.

Friday, August 22, 2008

Brain-Cheese, How Do I Love Thee?

Let me count the ways! Every time I go to Brain-Cheese's blog I become even more convinced that she and I were guinea pigs in a mad scientist's lab together in a past life. I think people only stumbled across me because of her taking notice of me and her appreciation of my off-beat humor. Don't get me wrong, I loves you all; I loves what each of you bring to the table and the way you view life with MS. I love other opinions and points-of-view. It is interesting to see others take on life with MS. But Brain-Cheese has a humor so akin to my own that I must tally the things that I have been too amused by in her recent blogs. Without further ado, here is my list of things I love about Brain-Cheese:

1. I loved the blog about going into Canada and being asked by the border patrol if they were meeting anyone. I yukked it up when she wondered if he was going to suggest someone to meet and could not help wondering if he had a friend for me. In case you missed it. Makes me think I could use some Canadian Bacon myself. (Insert a naughty smiley face here.)

2. Her post about her nose made me feel bunches better. I have these facial tics and spasms that make me make stupid faces, usually in public. My face scrunches up around the nose like it is trying to come to a point there and around my left eye I get spasms that make me grimace whether something is worth grimacing over or not. I see a cute little kid and go to admire them to the parents, my face starts spasming and I grimace over said kid. Not the best way to endear one's self to doting parents. And the picture of the hairiest nose in the free world was a refreshing change. I will swear on a stack of MS magazines that I can see a bat in the cave.

3. Like Brain-Cheese (that's Linda, and D. if you're nasty) I too can be bought. And, sadly, I am not ashamed of that. Finances are so tight around here and I feel like I just escaped the clutches of slavery (a marriage to a man with increasing alcoholism and irrational demands) that I could even be bought to be a companion of sorts to some lonely old guy -- and no, I do not mean sex. That is not even an option. I may be a cheap beeotch, but I do have some standards, albeit very minor ones.

4. "Chained in the front yard and frothing at the mouth." Can we not all relate to this post?! I know I sure can. Some stuff makes me so mad, I think about installing a padded room in my house. Sometimes I wish I could get thrown in jail so I can rail about the injustice of some of these things -- because they are criminal.

5. And lastly -- for this particular post anyway -- she got some (very) coveted blogger awards. I want to win some blogger awards! Even if they are, "Most Manure Spewed Forth By A Moron" or something like that. I do covet those awards something awful. I want to proudly display them on my blog. I would put copies on napkins, T-shirts, paper plates, place mats, my toilet paper with my grinning face giving a thumbs up, use it as my wall paper for my computers and cell phone, print it up to frame and hand out as Christmas gifts to anyone and everyone I have ever met, give a copy to my neurologist to hang in her office, make a button for my mommy to wear, a bumper sticker that says, "Proud Blogger Award Winner On Board," or, "I'd Rather Be Blogging On My Award Winning Blog!" But alas, no such thing has come my way yet. But wallow in your glory, Brain-Cheese, and know that you deserved it. I can only hope to follow in your hallowed footsteps.

Thursday, August 21, 2008

Origin Of The Name "Blindbeard"

My first major attack, the one that made me see a doctor, started with the most common symptom that makes people with MS seek out a doctor: optic neuritis. It started with a numb left leg and double vision in my left eye. At first only when I looked slightly off to any side, but quickly disintegrated into total double vision and massive dark spots all over my vision, making me almost completely blind. I had horrible ataxia, which is one of my favorite medical terms, and couldn't see anything unless I put in about 2 inches from my face. My little sister said she wanted to take me to Victoria's Secret, watch me shop for unmentionables, and see how long it took for them to throw me out of the store for being a pervert. (I am totally amendable to that plan and the next time I have that kind of vision problem, expect to hear the story of my being thrown out of VS.) One of my little sister's favorite things to call me when I can't see something right in front of my face, is Blindbeard the butt pirate. I am not much of a butt pirate, not being into butt hole pleasures of any kind, but her calling me that always makes me laugh, mostly at myself because it is so true.

I am a huge Spongebob fan and the "Argh" episode where they are pirates and Patrick puts on 2 eye patches and calls himself Blindbeard the pirate is one of my favorites. Especially as he stumbles around and falls over -- so me. I even had to use an eye patch to see anything during that first horrible attack, which lasted a little over 6 weeks even though I did the steroids for it. That always makes me wonder how long the attack would have lasted if I had not done the steroids. I had a major attack about 6-7 months later that took my whole right side, even up through my scalp, that was the most tingly, gross, itchy, and painful attack I have ever had -- but I didn't lose my vision on that one. I did the steroids for that attack too, but it still lasted almost 3 months. Again, how long would it have lasted without the steroids?

I have beard envy. Forget penis envy, which I think is a crock of manure anyway. Only men would think a woman would want a penis. Why would we want something that rules our lives like that? Something not particularly beautiful and so obvious when aroused? No thanks. But I do envy big, full, bushy beards. I also wish I could grow a handle bar mustache. My soon-to-be-ex husband and I made a list of things we wanted to change/get done in our house about a year ago, and on my list I put that he needed to grow a handle bar mustache that he could wax the ends of. I even drew a picture of him with it. He grows the best facial hair and I loved it when he would grow out a full beard and look like a mountain man that rarely ventures out of his shack in the woods. He wears a goatee, so growing a handle bar mustache would have been nothing for him. I even offered to buy the wax needed and help him curl the ends just right. He was not interested. He thought a handle bar mustache would make him look creepy and like a child molester. But he did enjoy the picture I had drawn of him with a handle bar mustache but that was as close to one as he would get.

So to sum up my usual long-winded-ness, I can't see sh*t and I would love to grow some fancy mustachios. I also enjoy that it is not girly, even though some days I am girly and foo foo --because deep inside I am not a girly type girl. So there is my story of why I call myself Blindbeard and why I love that name so much. I would love to hear the stories of how you came about some of your names; I am very curious about the origins of some of them, they being very creative and original.

Wednesday, August 20, 2008

Vow Of Chastity

Author's Note: I was going to write about prognosis and such but this chair is far too comfy and these cinnamon bears are keeping me company in this chair and making me too lazy to get up and grab the book. And its still hot here and its night -- okay, I'm just lazy.

Since splitting from my husband, I have taken a vow of chastity. (Little did I know that I would also be taking a vow of extreme poverty as well, but that belongs under a foaming-at-the-mouth-rant about the SSA.) I took mental inventory of my past relationships and came to the informed decision that I need to stop kissing toads. I have voluntarily taken myself off the market, where I am not in high demand. Today I saw a guy that looked like an ex of mine from days of yore. A 500 times hotter version. Of course I slithered out of the house without a shred of makeup, my hair in shreds and sticking up all over because I didn't take the time to make it behave, and wearing a pair of cutoff shorts that my little sister won't let me wear in public with her because they are so ratty and worn. All the things I needed to do today deserted my brain and I ogled with all the abandon of an older-than-him and not hot woman. It even crossed my mind to talk to him -- I'm not shy -- but my sacred vow of chastity made me rethink my desire to trip him, hog tie him and toss him into the back of my truck to live out his days under my bed. Or at least until I got tired of him, which might take a month or two. I even told both my sisters about it, he was that hot and the first guy I have looked at for awhile. He was working (an armored car type job) so that helped keep the chastity thing going a little longer. That and this little thing called "Multiple Sclerosis."

Me:You're hot!
Him:Excuse me, ma'am, I'm trying to work. The depends are down that aisle.
Me:You're hot when you talk!
Him: Uhhh, okay... don't make me call in my hideous, decrepit, old coworker to restrain you.
Me: (disappointed) You won't restrain me yourself?
Him: No.
Me: Will you frisk me?
Him: No.

I walk away and he notices the way I walk and asks that dreaded question that I get so sick of hearing (almost as much as, "But you look so good!"), "What did you do to your leg?" And there my fantasy hits a brick wall. Maybe in real life it would not be such a big deal, but I really, really dread having to explain it all. My little sister says I don't have to tell anyone anything anyhow. And I know that is true, but MS is hard to hide. Why don't I work? I'd love to tell you but that information is classified. Why don't I have two pennies to rub together? Keep asking these questions, son, and things could get very ugly for you and your kneecaps. I also know that for a non-toad my MS will not be a good reason to stay single for, even though it snuggles in my arms all night and wraps itself around my right leg by day, and that is what I am holding out for. I also feel I should throw in this disclaimer: I am not looking right now. I never enter a new relationship until I am over the old one and in a good place again. What do I have to offer if I am still wrangling with the issues that ended my marriage? And they are not all about the MS, by the way. I have high hopes of breaking my previous record for Most Time Spent Single.

Sunday, August 17, 2008

Conflicting Reports About Conflicting Reports; Should You Be Worried?

If there is one thing everyone can agree on about MS it is that they cannot agree on one thing about MS. This person thinks a, b, and c are caused by x, y, and z. This other person thinks x, y, and z are caused by a, b, and c. And this one thinks a, b, c, x, y, and z are not that big of a deal and mostly in your head and they happen to work for the Social Security Administration. I am reading a book about MS right now, mainly because it is the newest one I could find and it has Tysabri in it. I like to know the ins and outs of how things work (or the best they can theorize about how they work) and I also like the technical breakdown of MS and how it effects the person with it. Maybe because I am a pedantic, detail orientated kind of girl who always liked science best in school. Or maybe because I am waiting for my books that I requested at the library to come in, who know? I just know that it is always interesting to me to read the different theories about MS. I'm tired of the same old books that only reiterate, "MS is a autoimmune disease that attacks the myelin sheath... " I want to know what the latest is on it all. I am not holding out for a cure in my lifetime; I seriously doubt it will happen that soon. But I want to know things that nobody wants to tell me, like my prognosis, the odds of such-and-such happening, what I can expect to the best of the knowledge that is out there. I know there are no guarantees, but I also know that certain things will shed some light on what is most likely to happen to me. Two of the biggest conflicting things I have found so far -- and I am not that far into the book -- are the causes of the extreme fatigue that is so common in MSers and whether or not smoking is detrimental to MS.

The Fatigue Thing
One neurologist told me that my overwhelming lassitude was due to the destruction of signals along the nerve pathways. I turned that one over and over again and didn't see how that would make me so darn tired. But I also assumed that he knows much more than me about this disease, so I figured he had to be right. Another neurologist told me that they couldn't narrow it down to just one thing and that it remains largely a mystery. The book I am currently reading (and a lot of the books that I have read about MS are rather vague about the cause of fatigue, only talking about the very real problem of the kind of fatigue that MS brings) says that the fatigue is most likely caused by a combination of depression, the added work it takes to move about, which I find so true, my right leg is a drag (HA! It drags and its a drag to have it. I kill myself!) and the medications commonly taken for MS. What I want to know is if the mice (or rats) that they create the MS model in suffer from this overwhelming fatigue too. Do they take long naps, look at the wheel in their cage and think, "I need the exercise but if I do my vision will be messed up and there is a high probability of my falling and hurting myself," do they reconsider having a litter of babies because they are worried that they won't be able to keep up with them and give them the kind of life they want them to have? Enquiring minds want to know.

The Smoking Thing.
In the book I am reading they say that smoking will not alter the course of MS, nor will hard drugs or alcohol. Of course they do not think you should do any of those, but they feel drugs, cigarettes and alcohol have the same effect on MSers as the general population. There was one small study done awhile ago, somewhere in Europe, that made those conducting the study think that smoking could worsen one's MS. A larger scale study was done with different results. My mind is hazy on the details, so please forgive, more informed readers, for not remembering all the minute details right now. From what I can gather, smoking will not worsen your MS, which is great news for those of us struggling to ditch a (delicious, addictive, enjoyable) habit that is not good for the rest of your body even if it does not worsen your MS. I will miss my smoky treats but I am working on quitting anyway, for the good of the rest of me.

This concludes my report of conflicting reports. If nothing else it makes one feel like part of an elite club that science is having a hard time unraveling the how's, what's and why's of. Not that I am thrilled to be a part of said elite club, but if I have to belong to any group I would rather it be one that is complicated and confusing for even the most educated individuals out there. Nothing like confounding science to make one truly feel like an individual.

Friday, August 15, 2008

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.

Thursday, August 14, 2008

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 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.)

Tuesday, August 12, 2008

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."

Monday, August 11, 2008

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.

Saturday, August 9, 2008

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.

Thursday, August 7, 2008

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.