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.

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.

*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.

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. http://brain-cheese.blogspot.com/2008/08/god-bless-canadians.html 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. http://brain-cheese.blogspot.com/2008/08/is-my-nose-bent-out-of-joint.html 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. http://brain-cheese.blogspot.com/2008/08/ooo-ooo-i-have-question.html 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." http://brain-cheese.blogspot.com/2008/08/tysabris-hidden-costs.html 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.

Origin Of The Name "Blindbeard"

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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.

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.