Death's Door

Update: Why is it that when I am sick I never lose my appetite and only crave sweets & junk food? Why can't I crave carrot sticks or oranges? Instead I had to make a batch of cookies before I chewed a hole in the wall.


All week I have been taking care of the sick people who live in this house with me, so it is only natural that today I feel like a plague infested rat that has an overweight elephant sitting on her chest. I think it is just allergies (my ex-husband said he heard on the news that the allergies this year are the worst they have been in a long time, with the ragweed out of control) but that is a small consolation when one feels so cruddy. I don't want to complain too much about allergies because mine are very mild and usually don't mess with me much beyond a day or two when they are really bad. If mine are bothering me, others must really be suffering. But I do feel bad enough to wear ugly, comfy shorts, a worn out but soft T-shirt, and an ugly but comfortable brassier. I plan to catch up on all your blogs, work on some things of mine that I have been neglecting lately, and read till my eyeballs fall out. I may loll around in bed for the majority of the day too if I can get this elephant off my chest. And when I am back from death's door, I will be back to posting my usual junk. FYFI: I am working on my superhero costume for Halloween and other situations that call for it. I already told my family that I was going to be a superhero for Halloween. It is a big change from my usual costume of the living dead -- I am so perfect for that, walking just like a zombie would.

Potpourri Of MS

What exactly would a potpourri of MS smell like? In my case it would smell like alcohol swabs, fresh bedsheets with a sleeping body on it, coffee (to keep me out of that fresh bed), turpentine (to clean my paintbrushes), and the cold air from my window that I leave open year round. I remember reading about how Stephen King came up with his ideas for books. He said that it was like what gets caught in your drain, the stuff you have to clean out from time to time otherwise it will build up too much to allow water to drain. I think that is a perfect analogy of what happens to me. I get a build up of ideas and words that I have to clean out of my head to move on to the next idea. So without a single definite idea, here is the potpourri of ideas that need to be cleaned out so I can move on:

Secondary To MS.
Maybe it is just my bad luck, but it seems that ever since I was diagnosed with MS everything about me has become secondary to it. I am not longer just me. I am me secondary to MS. When I made a "suicidal gesture" it was recorded as a "mood disorder secondary to MS." My overwhelming depression and anxiety are "secondary to MS." When I got deathly ill (in my own mind at least) after the steroids and thought I might have pneumonia, the doctor found that I only had a bad lung infection that was "secondary to MS" due to the steroids, which always mess up my lungs. If I complain about any problems I am having, bodily or mentally, they are always taken in the context of my MS. I know MS messes with the whole organism, but sometimes I feel like I got pushed aside for my MS to take over my (pathetic) life. Anything I say or do that may be a little different from the norm is chalked up to my having MS. I know people love to say that they have MS, it doesn't have them, but sometimes I feel like it has me because I cannot be taken as just me. I will always be secondary to MS and that really chaps my hide.

Too Thin Women.
This is not totally related to MS, well, not even close actually, but it has been on my mind lately. Whenever I see a too thin woman I can't help but be glad that I have some meat on my bones. I am hwp (height/weight proportionate, for those of you not up on singles' ad talk) and proud of it. Before 4 rounds of steroids in 10 months, I was an underweight 125lbs at 5'10" so I know about the whole too thin thing -- but mine was not intentional. I didn't like my saggy jeans that looked like I dropped a stinky in them and I certainly didn't enjoy not having much on top. The 4 rounds of steroids made me gain 55lbs of which I have lost over 20lbs, I wouldn't mind losing maybe 10lbs more -- but that is all. Before starting Copaxone I was a full 34C. One of the less common side effects of Copaxone, that I was unlucky enough to get, is "breast tissue enlargement." I went from my acceptable 34C to an unacceptable 34D with double boob for awhile there, but there is no way on this side of the grave that I will go up to a 34DD, NO WAY! Even though I have lost about 25lbs, I am still firmly in the 34D size and unhappy about it. I always thought big boobs would be heaven on earth. I was dead wrong. They suck. They are hard to hide and if they show I feel like that is all anyone sees, especially when I see their eyes dart to my chest, back to my face, down to my chest, back up to me etcetera. I have also noticed that when I venture into an area of more money, the women get thinner. I don't envy their boy-bodies at all. I like having hips and a waist, not just a straight line. And I even enjoy having a little more on top, even though I wish it was a little less, because these women have nothing. Do men really find this attractive? I find it so unfeminine and too 12-year-old-boy-like. I also think they see me and are glad they are thinner than me while I am looking at them and am glad I am heavier than them. I love having curves and wouldn't be a beanpole again for anything.

Adjustment Issues.
The worst part of being single again is getting used to not having to care for someone else. Sure, I do all the housework and cooking, but I am having a hard time getting used to not having someone else to keep up on. I used to give my husband manicures, pedicures, facials, and all sorts of different things to keep him presentable. Now I don't have anyone to do that for and it feels weird, like something is missing. I give my sister pedicures but she isn't into facials as much, even though she really needs them -- her pores are so clogged (and I have a horror of clogged pores). I used to plan meals by what others' like and wanted to eat. Now I just throw together something for Princess and I and it is usually kid-friendly, and we all know how quickly kid-friendly food can get old. I feel like I need someone to shop for, stock up the house for, hang their shirts up the right way for, iron their clothes as needed, keep the food and shampoos and soaps they like in ample supply, keep a clean house for and so on. I have toyed with the idea of making a resume for someone in need of a woman's services (not sexual -- not ready for that yet). I could give copies to my brother-in-law, he is a fireman and knows plenty of men who could probably use my services. As it is all these housewifely talents are being wasted when there are probably people in need out there with wrinkled shirts and no hot meals. And that is just not right.

Those are the main things that have been rattling around in my head and clogging up my thoughts, but now that they are out of the way I can move on to the next idea, and I'm sure it will be my usual nonsense. Like lately I have been pondering why I am such a klutz who always has her foot in her mouth... but that will be a different post.

I'm A Legend In My Spare Time

Yesterday I woke up with an idea that can only be chalked up to divine inspiration. Being a true child of the late 80s and early 90s (even though I can't stand cherry chap stick -- all medicines growing up were always cherry flavored) I loved In Living Color, especially Handi-Man. His catch-phrase of "never underestimate the powers of the handicapped" was rolling around in my head and giving me ideas that were too good to ignore. I also have a deep love for alter-egos and dressing up. I decided that it was time for me to embrace my inner superhero and become Handi-Girl. I have a cape that only needs to be attached to an acceptable shirt and I have commissioned my mom to make me a suitable skirt. There is no way I am going to wear spandex pants -- I gained too much weight from steroids to scare the women and children (or maybe I should say men) of this town! It has to be black because that is the most slimming (and I really need that!). I am working on a symbol for my shirt, one that is recognizable, respectable and can easily be ironed on (I have those things where you can make your own stuff to iron on to clothes).

I will be the defender of the gimps, a symbol of the injustice we suffer at the hands of the non-ataxia challenged. With my cane and reaching tool I will stop those who want to park in handicapped parking "real quick" when there are those who really need it. When we have to fight to get decent medical care I will be at the forefront to protest the injustice of "the rich stay healthy and the sick stay poor." When the SSA plays the how-long-can-we-drag-this-out game, I will be there fighting to have our voices heard and to help those who need help find the resources to continue the good fight. Handi-Girl is going to join the ranks of the MS advocates (at her local NMSS chapter, of course) to show that we will not take the SSA rewriting our disease and telling us how our disease is regardless of what respected neurologists say about it. She will not tolerate their unfounded beliefs that our symptoms are not disabling and will work to get better representation for those suffering from what the SSA deems "mild and not disabling" diseases. Even if she has to gimp her way to every political figure or become a lobbyist herself (which I have been considering) she will not let those in power ruin her brethren.

Be prepared to see me make an ass of myself (nothing new there) by going about in my Handi-Girl outfit. I have beautiful plans for what I will do in it, like go to MS walks, advocate in it, maybe even start to attend some MS support groups in it, go to rallies (and if there are none, start one), the opportunities are endless! I know I said this before, but it bears repeating: The SSA messed with the wrong crackpot! I am not going to crawl away quietly with my tail between my legs and the more they f*ck with me the more determined I become.

Everyone's A Critic

Sometimes I wish I could get fired from my job. Do I have dreams? Do I have aspirations? Heck no. But I have a toilet bowl that is springtime fresh, according to the toilet bowl cleaner label. I don't do much outside of cook and clean for ungrateful persons-who-shall-not-be-named (*cough* Sister! Princess! *cough*). If someone cooked and cleaned for me I would be so grateful, I would not even complain if they put my kitchen towels in the bathroom. But, alas, no such luck for me.

I don't fold my shirts, I hang them up.
God forbid I forget that one! We couldn't possible fold our clothes and put them in our dressers! That is just silly talk. And if our dressers puke out their contents all over the floor, that is acceptable -- it makes finding something that much easier. Even though I labeled their drawers for them, to make it easier to organize and keep track of what goes where, they still like to start at the top and stuff in as much as possible regardless of what it is. The top drawer will be bursting with pajamas, shirts, shorts and unmentionables, but the bottom drawers will be empty.

I get hungry at night!
I never ever under any circumstances eat in bed. Never. So I do not understand the wrappers and dishes strewn about in their bedrooms. Have a snack before you go to bed, just don't take the box of doughnuts to bed with you. And if you have to take snack cakes and milk to bed, BRING THE DISHES BACK OUT! I will gladly do the dishes (because nobody else will) but I will not take them out of your room. And if I get bugs in my house, doom on you! I will take it out on your big round behinds!

I don't put my hairbrush/makeup bag/hairdryer/straightening iron/hair products there.
I do. When you don't put anything away you have to deal with where the person who does put things away puts them. And sometimes that means you will find your makeup bag in with the bathroom cleaners because I like to pitch crap under the sink when it takes over my sink. They tell me this like they think I care. Like I am worried about where I put their stuff when they leave it all over the place. Silly kids, I don't care if you don't want your stuff by the toilet bowl brush. If you don't like how I put it away, do it yourself, or do your hair with toilet germs, it doesn't bother me.

Did you wash my ______?
I gladly do the laundry. I will not pick it up off your floor so if you want it done drag it the 5 feet into the bathroom laundry basket. If it did not get washed you have several options: put it in the laundry basket and wait for it to come back around; wash it yourself, you can even borrow my antique washboard and take it to the river; wear it dirty; wear something else; or go naked. I am okay with all those options.

You made that for dinner?!
You know what my favorite meal is? Whatever someone else makes. I will never complain if someone cooks for me. I will praise it to the skies and back and eat with a grin on my face even if it tastes like something fresh from the manure pile. The other day I made a meat loaf and my sister said her's was better. Then the next day I made sloppy joes and again she thought she could have done better. She has IBS so she gets the runs from anything slightly spicy, so I made those meals more bland to help her. After the criticisms, I made stuff the way I like it -- with a little bite to it -- and enjoyed watching her race to the toilet. When I suggested she make the meals, she decided that she had never tasted anything so delicious in her whole life and that nobody can cook like me. Why I don't have my own cooking show is a mystery to her! All others pale in comparison to me.

Can you move your stuff over? I want to color here. Why are you painting seaweed?
I'm not painting seaweed, they are going to be flowers, thank you very little. I paint with oils and I like to layer the paint. Where you want to color is my art desk. You may use it, but do not touch my stuff because oils take a long time to dry and I don't want them smeared. If you push all my stuff around and scatter my painting utensils, I will get crabby. If the dogs chew up my brushes and paints (which the little one did -- he ate one of my white oil paints) I am going to take it out on your piggy bank. I don't care if I have to haul the change to the bank to cash it in. Please don't eat at my art desk, I do not want crumbs all over my stuff and in my paints. But as you have already dug into my stuff, please try to be respectful of my things.

I love my roommates more than anything but sometimes I get tired of being the maid to such slovenly pigs. It is a full time job keeping up after 3 people who do not do anything. If they eat something they just drop the wrapper, after a shower they wad the towels and leave them anywhere, they bunch up my kitchen towels after drying their hands so that I am forever going behind them and unbunching them so they don't get mildewy. I go around saying, like a mantra, "Don't leave that there! Pick that up! Put that away! That doesn't go there, put it where it belongs!" and so on. I made a map of where the trash can is outside for them so they wouldn't get lost, and I gave them a list of things that they can do and I won't get mad about. Like take out the trash when it is threatening to topple over. It is not a Janga game. We are not trying to see who can pile it the highest without making it fall over. It is okay for them to take it out when it is full, they don't have to wait for me to do it. Yesterday my little sister's room was bothering me so much I snapped. Her laundry was filling the living room because she has no organization in her room and thus no room for all her crap. I went into her room where she and her boyfriend/fiance were sleeping, yanked the covers off them (all the while praying they didn't sleep nude) and made them get up and clean that room. That is the benefit to being the older sister, you get to be bossy and get away with it. The good news is they got it clean enough to get the crap out of my living room and I was able to vacuum a small part of her room. Baby steps, but progress all the same.

*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.