*About Me*

I never know what to write in the "About Me" section of profiles. I don't feel that I can give an accurate idea with only so much space to write it in. I am such an eclectic blend of odds and ends that I don't feel I can give a good synopsis of myself. So I am going to utilize the more generous space here and give a more realistic rundown of myself, just in case you care to know.

About Me

I was born at an early age, conceived at an even earlier age to badly matched parents. (I was born in the same hospital that my neurologist is in and where I get my Tysabri done each month, and where I hope to die, finding that to be a fitting end to a unremarkable beginning.) My father is a dry alcoholic and my mother is a hippie -- she still wears the same bell bottoms that she wore eons ago, which pisses me off that she can still fit into them and my jeans from high school. My father walked out on us just before my 15th birthday and did his best to make us fail, refusing to work and continually dragging my mom back to court to reduce his child support. His side of the family, while "worrying" that my mom would keep us from them, turned their backs on us and took his side, believing that he was too sick to work (he has allergies) yet it was okay for him to attend any/all singles events possible. My mother, in an inspiring act of strength and determination, went back to school to become an RN in her late 40's. That woman struggled and did her best to keep it all together for us while trying to make a better future for us all. She worked full time and went to school full time to support 3 girls that their father was doing his best to not support. I didn't appreciate the sacrifice she was making then, being a teenager and not understanding the difficulties of trying to make ends meet, but I do now. All of us are close to our mother, often forgetting we have a father, and rotate around her like planets to a sun. In fact, when I was diagnosed with MS we couldn't figure out where it had come from because there is no history of MS on my mom's side. When my dad told me he had several cousins that had had MS (now all deceased) we all yukked it up that we had forgotten that he had contributed to our genetic makeup, believing that my mother was asexual and had budded us off herself. Now our current goal is to get the oak tree to come back to the acorns because she lives 2.5 hours away from us, and that is unacceptable.

My diagnosis came out of the blue for me. Knowing now what I overlooked then, I can trace the beginnings of it. I have always been a happy person by nature, so when I had depression and anxiety pop up almost overnight in my early 20's it was baffling. Suddenly I was having panic attacks, which I think are one of the worst things a person can have, and problems with "the blues" that I had never had and couldn't figure out why I was feeling that way. I had no idea there were medicines to help with those things, so I suffered for years with it. In my late 20's I started having extreme abdominal pain and it was discovered that I had endometriosis. By the time I finally went to the doctor for the pain, my left ovary had failed (being so diseased) and my right one was getting there fast. The odds of my ever having kids was slim to none and the doctors were worried about my having any healthy eggs to make healthy kids with. I was given a few months to try and get pregnant (if that was a high priority with me, which it wasn't, I never really wanted my own kids, I wanted to be a foster parent and adopt an older kid) so I married my husband because we had been together for 1.5 years and were trying to see if we could have kids so marriage seemed natural if you are trying to have a kid with someone. After 6 weeks of wedded bliss I had to have a total hysterectomy due to increasing pain that lasted all month with no respite, so I raised the white flag and I am so glad I did! I no longer live with that pain and have no period; all win/win in my book. The only downside was that I felt guilty about getting married and taking away his chance to ever have kids, which led to my first nervous breakdown. They are not called nervous breakdowns anymore, as I'm sure you all know, being so much more informed than me. They are now called "Major Depressive Episodes." All I have to say to that is, ya think?! I didn't eat and barely slept for a week before I totally broke down. Then I was introduced to psychotropic meds and I was able to get back to life, them bringing my anxiety and depression under control. That is why I take offense to people who criticize those of us who need these meds. They need to walk a mile in our shoes to see what life is like without them, and then tell me what I should be doing. If I did not have these meds, I would not be alive. Life would not be worth living. Maybe that is survival of the fittest and nature's way of weeding me out, but I am not ready to be weeded yet. I am a proud taker of psychotropic meds and will tell anyone who is having similar problems to look into them. They are here for a reason. There is no need to suffer in silence. There is a big difference in needing them and abusing them. I have been taking Xanax for almost 7 years, and my dose has never increased. I have decreased the night dose due to other night meds, and under stress I may take an extra dose, but I am not giving hand jobs for it -- and that is the difference between "need" and "addiction."

My MS next showed itself by making parts of my legs numb from time to time, making shaving them uncomfortable and thus giving me a good reason to go au natural. I also started to need naps more often, which was really odd for me. I am a high energy person, high strung and not needing tons of sleep. Then one summer (so obvious now!) I had to take naps every afternoon and it continues to this day. At first I thought I was just being lazy and couldn't figure out why all of a sudden I had this overwhelming need to nap each day just to get through the day. But if I didn't nap I would get clumsy, once falling over a foster kid and spraining my ankle. The final straw was falling down the front steps on an icy day (barking out "F*CK!" for the neighborhood to hear) and the resulting ON and numbness in my left leg. And that was the beginning of the end of my life as I knew it and you know the rest of this story, it probably being similar to your own. So lets skip to more interesting stuff.

I have a deep love for the printed word. I have kept a journal since the 2nd grade and still write off and on depending on my hands and patience -- writing being so slow I prefer to type out what I gots to say. Books are my passion and I mainly read historical non fiction because I am that much of a geek. Sometimes I venture out and read fiction, and right now I am counting down the days until the 3rd Eragon book comes out. Christopher Paolini is lucky it is so soon because I gave serious thought to driving to Montana to have a long talk with him about what is going on in those books. I will read anything about any topic and have read on such a variety of subjects that there is no rhyme or reason to them. Anything historical non fiction is good to me, and that encompasses a lot of subjects.

I live in Nebraska. I do not live in a cornfield. I do not live anywhere near a cornfield. I detest the notion that the Midwest is all cornfields and nothing else. That we are stuck in the middle of nowhere, or when people are shocked that we have a clue about what is going on in the world or are educated and informed in general. There is no invisible fence around the boundaries of Nebraska that shocks the sh*t out of us if we try to leave, we are allowed to roam out of the state into other states and countries. We have libraries, museums, and such in our cities (yes, there are cities and they are not in the middle of a cornfield), we even have gang problems. I am not a small town type person -- I can't live where there is no pizza delivery, it is so unnatural. I also believe that it is not about where you live but what you make of it. I don't need to live in a crowded, polluted city to be informed, and I do not assume that people from less densely populated states are uneducated. Whew! I feel better having gotten that off my chest! Moving on...

I hate, in no particular order, CATERPILLARS, rude people, rhubarb, my pointy nose, the smell of old lady makeup, cherry flavored anything, the fact that at 34 I still have freckles, long walks and getting caught in the rain, a messy house, too much perfume/cologne on someone, not enough deodorant on someone, rough or itchy textured clothing, people invading my personal space, this weight from the steroids that I can't get rid of, and not having anything to read.

I love, again in no particular order, books, bananas, hamsters, the color blue, ripped up old jeans (I am a child of the 80's), slippers, coffee, music of all genres, my truck, handicapped parking, craft stores (they suck the money out of my purse but I love them anyway), Hello Kitty, writing, blogs of all kinds, the comments left on any blog -- they are usually more fun then the blog, painting even though I have no talent for it, my dog, cold winter days, the Muppets, my Nintendo DS, all my Nintendo systems in general, antiques -- especially old books, junk jewelry and a cold dark bedroom. I could go on, but those are the major joys of my life.

I would love to continue but the other occupants on this house have woken up and have diarrhea of the mouth, so I will have to finish this on another day.

Baby, I'm Amazed By Youuuuuu

I don't know how you guys do it (or "all ya alls" for any southerners out there). It amazes me that you can write on a regular basis blogs that are interesting, funny and relevant. I like to surf through your blogs and see what you are up to and it never fails to inspire my respect that you can blog almost everyday and still make me want to keep reading to find out what exactly you did today. You could blog about what shirt you chose to wear, how many times you had to use to toilet, or whether or not you made your bed that morning (by the way, I make my bed every morning. I'm so ashamed!) and make it interesting. I don't blog as much when I think whatever is going on in my life is boring and I don't want to share the bore. But your blogs have inspired me to blog more, whether that is good or bad I leave to you to decide. So I am going to pour out what is on my mind and going on with me (usually a bunch of nothings) regardless of how much it exposes me as the terminal bore that I am. So thanks, guys, for inspiring me. Or maybe I should offer an advance apology? Here's looking at you, kid!

R.I.P. My Marriage 2001-2008

God, what a relief it is (plop plop fizz fizz) to have closure on a messed up relationship! I went back to my old house 2.5 hours from where I live now, to help my going-to-be-ex husband get all the papers finished to get the divorce rolling and to help him drain the pool the right way, without ruining the pump or flooding the street, which the neighbors don't enjoy for some reason. He thought we could have a little "fun" but I don't do sloppy seconds and after being together for over 9 years, I know what his fun entails and I ain't interested anymore. He has been going out again and I noticed the change in his behavior, the way he acted with me, his lack of dying for some sexual attention that was present a few months ago. He may think I'm not that smart, but he sorely underestimated me. I could smell the different smell in the house, a kind of perfume or girly soaps and shampoos that did not add up to his usual scent -- and I know this for a fact because the man only uses a certain soap and shampoo, and never anything too feminine or he won't touch it. I am not even slightly jealous so it doesn't bother me at all. I know what a prize he is not, and I hope the woman who dates him sees the signs and either leaves or has the strength to fight back, which I did not have the last few years.

When I look at the signs of an abusive relationship, it scares me that my marriage followed that pattern so perfectly. I feel like I dodged a bullet by getting out when I did. His increasingly controlling ways that tried to isolate me from my family, his way of being a bully to others and not letting me console them when they got upset, his increasing alcoholism and anger that would lash out over the smallest detail that was overlooked. No, I am not jealous of any woman who gets him. If anything I pity the fool who falls for the facade he puts up before he really gets to know you.

Right after I left he went a little "crazy" and did some stupid things. Things that worried me that he might go too far and hurt himself or me -- a fear that kept me from moving on with my life until he had got to a better place. After seeing him this last time, I feel comfortable with moving forward with my life. It is such a relief to be able to put my dead marriage to rest and be able to get on with my life. I felt like he was killing the best part of me; stifling, smothering, draining me of myself. Now I feel like a weight has been lifted off of me. I feel the freedom to start my life anew from this point on. I am so glad he has moved on and thus set me free. It has to be one of the best feelings there is. The freedom to find yourself and be yourself without having to worry about someone else.

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.

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.

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.