Love Me Don't Judge Me

I met up with my soon-to-be-ex husband last night to switch cars (YEA! I have my darling truck back and he got his "road car" back. A car that has over 300,000 miles on it and hardly a scrap of paint left on it) and have one last roll in the hay. I say "one last" because he informed me that he is going to put himself back on the market this new year. That irritated me a little too much. I felt he was dying to replace me sooner than I thought he would. A thought that rankled me and really stuck in my craw. Is it too much to ask for an ex to pine away, tear his clothes, wear sack cloth and ashes and bemoan the fact that you are gone and nobody could ever take your place? Or even to curl up and die, making my life easier and less impoverished because then I get all the money (and he is a saver with several different bank accounts and plenty of assets)? I don't think that is too much to ask. I ripped into him about racing out to get his d*ck wet and my still not wanting to put myself on the market again -- I'm just not ready yet and I have serious doubts about who would want to date a woman with my problems and who needs to be home by 9 pm because that is her bedtime. He, trying to flatter me, told me that he didn't think I would have any problem finding dates. And while I am flattered that he thinks boys will be at my door with a battling ram to get to me when they know I am ready to date again, I still have my doubts. I pulled out every insulting name I could think of: ass hat, ass clown, ass master, ass wipe, butt plug et cetera, and he wanted to know why everything had to do with the ass. For most men, who, in my experience (and maybe I just have been unlucky), tend to be a little homophobic, saying they are obsessed with asses and all things that have to do with it is the ultimate insult. Telling him to go suck his mom's d*ck just doesn't have the effect on him that I want. But insinuating that he enjoys all things ass will get a response for him. I told him he needs to run backwards through a corn field naked because I think I hate him and he obviously needs some butt hole pleasures. He sadly, flatly, "that would hurt," and gave me the Christmas gifts he got for Princess and me, which were pretty funny. Back in the good days of our marriage, he would bring me something from every place he went: a cool rock, a cactus from AZ, even a palm tree from CA. This time he got 2 lumps of coal from WY and wrapped them up. I got a good laugh out of that, and he told me that he had been trying to find a certain game for the Wii for us but they were all sold out in the town he lives in, so he gave me the money to buy it here, or a good game that we wanted. I have to give the man this: he never was one to give cheap gifts, hence why I have a lot of expensive jewelry that I don't wear. I may wear some of it again some day, but not just yet. My little sister likes to wear some of it because it doesn't have the same meaning for her and it makes her feel fancy. She had the misfortune to marry a man that didn't have any money and any that he did get, he spent as fast as it hit his wallet. Now she has a man that doesn't get the hint that she wouldn't mind some nice jewelry. It took him 2 years before she even got a single rose. My ex would always buy flowers for Princess and I, a thing I always liked about him, he would get red roses for me and purple roses for her because that is her favorite color. But I am not feeling too kind towards him right now, no matter how nice his gifts were. I told him I hope he gets herpes all over his mouth -- and other places -- for being so ready to jump back into the dating scene again. It is going to take me a little while to become reconciled to the idea of him chomping the bit to replace me, the big ass hat!

Children!

Last night Sugarbowl and her bf/f both had to work, so it fell on me to watch Jabber Smith and Princess Talk-a-hontas -- a job I wasn't jumping with joy to have. There is a serious sibling rivalry going on between them that makes being the referee a not-enviable task. I bought a whistle years ago, while doing foster care, to quiet the ruckus and make everyone stop fighting for a minute, a minute that allowed me to threaten them into getting along -- no one wants an angry Blindbeard on the war path. I'm an equal opportunity punisher. I don't care who did what. If you are fighting, you are all in trouble, and an early bedtime always works for me -- a fate worse than death for kids who boo hoo if they have to go to bed 5 minutes early. I wish there was not such a sibling rivalry going on, but it is a rivalry that has been raging since the day Jabber was born.

Sugarbowl got pregnant with Princess at an early age, 18: when she was no where ready to have kids. She was laboring under the delusion that she could not get pregnant, so why bother with any protection? Why indeed! She got pregnant by an alcoholic, which made her realize that he was not someone she wanted to raise a family with. She left him and met up with an ex boyfriend shortly thereafter. She and said ex bf got married when Princess was only a few months old (if that old, I can't remember her exact age when they got married). Sugarbowl wasn't really sure she wanted to be married to him; she had doubts about it from the beginning, but she did know she wanted a father for her child and he was accepting of the fact that it wasn't biologically his child and treated her like his own anyway. Alas, that sounds better than it was. Both were too young and immature to be parents. They were resentful of the restrictions that having a kid put on them, so a good portion of Princess' life she has been with my mother or me. Now, fast forward 3 years when they both had done some growing up, they decided to have another child. A planned child. A child that would biologically be both theirs'. Under these new conditions Jabber was born, and from the start he was his mother's own darling. It is a sad fact that most children want their mother's love no matter how awful of a parent they may be -- not saying that Sugarbowl and her ex hubby were awful, just not as charmed with Princess as with Jabber. Jabber knows this and knows how to manipulate them to get out of trouble and get his sister in trouble. He is only 7 so I don't really hold it against him. It has been his ticket out of punishment since day one and I don't expect him to grasp the implications of what it is doing to everyone when he does this. I call him Lazy Victim to remind everyone that he will try and turn everything around to place the blame for his actions on someone else -- all too often Princess. But I am usually a spectator to their going ons and will correct him when I know what really happened. My little sister will listen to his sob story and take his side because he is so much smaller than his big sister and she can really wallop on him when he messes with her. She doesn't usually listen with such patience to Princess and will punish her because she is "older and bigger" than him and should know better.

Sugarbowl and I have talked about all this and she has been really trying to be more fair, but she just does not have the same bond with Princess as with Lazy Victim. But I do! I love them both, but I hate to see them vying for attention, love and for their mother to take their side. I will admit that I am a lot harder on Lazy Victim than she is, but that doesn't mean Princess is coddled. I just don't accept his excuses and don't let him run away when it is time to work a little. When he starts in on why it is his sister's fault because he didn't do something/broke something/destroyed everything in his path, I heckle him about it until he gets angry because I am not sympathizing with his poor plight. When he does get in trouble I ask him whose fault it is, because I can't wait to hear; am waiting on pins and needles, Lazy Victim, please don't leave me in suspense any longer! I can't take the tension!

So last night when I was left in charge, Princess told me that she liked it when I was the one keeping the peace because I am fair. She isn't the one in trouble for everything and Jabber gets in trouble too. Heck, I encourage them to keep fighting because I loves me an early bedtime and I would rather have them united against me than against each other. Nothing gives me the warm fuzzies like the kids plotting to not have an early bedtime and to show me they can do it, because I am not a believer in their ability to not fight for 5 minutes.

So what was the point of all this? The kids drove me crazy, made me curse my little sister's lack of birth control, and because they were united against me, we all went to bed on time, to my dismay -- I was rooting for an early bedtime. I don't give a hockey puck about who did what. Start fighting and trying to tattle and everyone is in trouble, even the dogs if they got involved. It made me feel the weight of my MS when I was so fatigued by the end of the night and realize my neurologists were right: I could not keep up with kids on a day-to-day basis. Once in awhile is okay, but if I have to referee constantly there is no way I could provide the care and supervision kids need. And what is worse than realizing your neurologists are right? I like to defy their instructions and do what I am not supposed to do, but this time I had to raise the white flag and grudgingly admit they might be right. Darn it all to heck!

New Man In My Life

Meet my new man, Domo. I have fallen head over heels for him. He charms me to the point that I lose all rational thought when around him. I have a stuffed effigy of him in my bed -- the only man I will consent to have in my bed (besides Midget Poo Poo Platter: I need someone to guard my chastity all night against would be suitors). All night we cuddle and he is the only stuffed animal I have slept with since I was a child. The only stuffed animal that I don't toss out of my bed in my sleep. I go to sleep with him cradled in my arms and wake up with him still near me. I have a T-shirt with his picture on it, proclaiming my love and letting the world know who has my heart. For Christmas I got a backpack/purse/bag with him on it, for my books and anything else I need to tote around with me that is too big for my current purse (I have a purse obsession that takes up most of my closet. The other part of my closet is full of my shoe collection -- my other obsession.) I also got a key chain with him on it that I put on my keys post haste, letting everyone know that the removal of said key chain would endanger their lives. I took off my Hello Kitty key chain out of some respect for those who drive my car from time to time; but Domo is one subject that I won't bend on: he stays or you can walk, its all the same to me. He is the perfect man. He doesn't talk back; he accepts and loves me for who I am; and he will listen to me for hours and never grow tired of what I have to say. Ahh, isn't love grand?

And we have so much in common:

*He is an alien while my personality is alien to many people.

*We both hatched out of eggs, although my egg hatching was a little different -- a difference I don't care to think about too much. I'd rather pretend that my parents never had sex and that my mom is asexual and just budded off her children. My older sister, Mellow Yellow, told me, when we were kids, that whenever I heard my parents talking at night it meant that they were having sex. That scarred me for a long time. Whenever I would hear them talking at night I would cover my ears with my pillow, do anything to drown out that sound. I even kept a radio under my pillow for such occasions for a long time. Now that I'm older and know a thing or two about sex, I know people generally do not carry on conversations while doing the deed. But maybe because my parents never had sex they needed to have conversations late at night, just to give them something to do before going to sleep.

*We both have beady eyes. His are black and beady while mine tend to be red and beady from the eye strain that I get so easily.

*We both make that face when irritated/frustrated/really crabby et cetera. It feels good to just bare your teeth and show exactly how you feel.


*We are both stuffed with fluff under our ferocious mean faces. Granted he is more stuffed with fluff than me. I am not as much of a softy as he is, but I do have some soft spots to me, they are just harder to find.


All in all, we are a perfect match. A match that I don't see coming to an end anytime soon. And frankly, my dears, I think everyone else is relieved to see something, anything, replace Hello Kitty -- an obsession that they did not understand, not seeing the beauty and poetry of her like I do. I still love Hello Kitty, but I have a passion for Domo that she cannot touch. She never understood the fine art of cuddling in bed all night and always ended up on the floor: a sure sign that she and I are not the soul mates that Domo and I are.

Tysabri vs Copaxone

I have been pondering the pros vs cons of Tysabri and Copaxone. I love them both, but there are some definite pros and cons to both, and I'm not sure who the clear cut winner is here.

Copaxone has about a 30% reduction in relapses. Not too impressive, but a reduction nonetheless.

Tysabri has an almost 70% reduction in relapses, which makes it the winner of the Reduction round.

Tysabri has to be infused at an approved infusion center that is down on 42nd street when I live waaaayyyyy past the 200s, maybe even into the 300s.

Copaxone was delivered to my door and had the added benefit of letting me shoot up at home, which makes it the winner of the Convenience round.

Tysabri costs me (well, my insurance and ex ass master of a husband who is still paying those bills until the final death knell of our marriage) roughly $400 for each round.

Copaxone, because it was a mail order, was only $5 per month, making it the winner of the Lets Not Impoverish The Impoverished Anymore round.

Tysabri takes an hour to infuse and an hour of observation. An hour of unspeakable boredom for those of us with no patience, giving me a feeling of entrapment and being "stuck," a feeling that I abhor with every fiber of my rotten being.

Copaxone took me about 20 seconds (if I really lollagagged) and then I went about my merry way and got back to my life of a bunch of nothings. So Copaxone wins the Least Time Sucked Out Of My Impatient Self round.

Copaxone's biggest side effect (for me) was the itchy injection sites that caused me to scratch my skin into scabs. That and I jumped up a brassier size, a more uncommon side effect that I could have done without.

Tysabri sometimes leaves me with some ugly bruises, but not very often, which makes it the winner of the Not Making Me Look Scabby And More Diseased Than I Already Am round.


Yikes! Look at the time! I have to get ready to go see my neurologist -- on Christmas Eve no less, when I am very busy being a Scrooge. I have to sharpen my claws and get my "mean face" on because I mean business. I have made me a list of things that I need to... discuss in an adult and calm fashion with her. Things that will make her glad to see my hind quarters receding from her after I get done sinking in my well sharpened claws into her pompous, bad breathed self. *Side Note*: Am I just really unlucky or do all neurologists have really bad breath? Like they haven't heard of mints or even a glass of water from time to time? Every neurologist that I have seen has sizzled off my eyebrows and made my nostrils seal themselves shut in outrage. Anyone else have that problem with their neurologists?

Greek Tragedy

I almost had something akin to a Greek tragedy on my hands the other day. No, I didn't sleep with my mother and gouge my eyes out... which makes me think of a story that I don't find too amusing but the rest of my family does. So if you can humor me for a minute, I will spin a tale of my own tongue-twisted stupidity:

Back in my early 20's I lived with my mommy again for a year for reasons that are too boring and myriad to go into. While living with her I was able to get my car insurance through her agent on a family plan, or something like that. Between shifts at the restaurant that I was working at, I decided to take my payment in person to the insurance agent and save a stamp, his office being right down the street from my place of employment. While dropping it off to him, he asked me if I was still living with my mother. I replied in an off-hand way, "Yes, we are still sleeping together." Realizing my gaffe I barked, "I mean living together!" But the damage was done. He looked at me like I fell out of the stupid tree, hitting every branch on the way down, and landed in the moron bushes that I was still trying to fight my way out of. From then on I used stamps and mailed my payments in.

But the true Greek tragedy that may have played itself out (that remains to be seen) happened the other night when my little sister made Butter Balls -- my all time favorite cookie in the world. I attacked the cookies with a vigour and stuffed my face and guts as full as I could, then I took my night meds and went to bed. Stupid me, forgetting that one of my new night meds upsets my stomach and makes me want to puke all over anything near me, laid in bed with my guts churning and Butter Balls threatening to come back up. I don't want to puke in my own bed but nobody wants me to puke in theirs. I figured people who don't change their sheets as religiously as me would not mind a little regurgitation mixed in with sweat and whatever else is on their sheets. I figured dead wrong. My little sister doesn't want me sandwiched between her and her bf/f when my guts are churning, or any other time for that matter. Usually I agree 100% with that, but I would rather soil her bed than mine. I was feeling the weight of the Butter Balls on my stomach and the thought of them makes me sick still. I am hoping that if I take a break from them and let my guts forget all about them, that in time I will be able to eat them again. I hate to lose one of the joys of my life all because of some stupid med that makes me green in the face and queasy no matter how much or how little is in my stomach. Oh my dear Butter Balls, I hope we can meet again someday. I will miss your beautiful powdered sugar coating and buttery, crumbly, round goodness. But until that day arrives, the dogs can have mine. My stomach still lurches at the thought of them.

12 Days Of Christmas

*Author's Note: I'm reposting this for any who might have missed it last year, but I am working on a new one for this year. MS is the gift that just keeps on giving... and giving, and giving, and giving, and giving.

*Author's Note II: For some crazy reason, my date on here is messing up. Until someone fixes it for me (ie my roomies) it will be wrong. Just wanted to let you know that, no, I am not living in my own time zone, contrary to popular belief.


On the first day of Christmas my MS gave to me,

1 life time of misereeeee.



On the second day of Christmas my MS gave to me,

2 frozen feet,

And a life time of misereeee.



On the third day of Christmas my MS gave to me,

3 hours of sleep,

2 frozen feet,

And a life time of misereeee.



On the fourth day of Christmas my MS gave to me,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the fifth day of Christmas my MS gave to me,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the sixth day of Christmas my MS gave to me,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the seventh day of Christmas my MS gave to me,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the eighth day of Christmas my MS gave to me,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.



On the ninth day of Christmas my MS gave to me,

9 assistive devices,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.

On the tenth day of Christmas my MS gave to me

10 year old I can't keep up with,

9 assistive devices,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.

On the eleventh day of Christmas my MS gave to me

11 jerks and twitches,

10 year old I can't keep up with,

9 assistive devices,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a lifetime of misereee.

On the twelfth day of Christmas my MS gave to me

12 things I can't remember,

11 jerks and twitches,

10 year old I can't keep up with,

9 assistive devices,

8 new aches and pains,

7 night meds,

6 morning meds,

5 itchy spots,

4 stiff limbs,

3 hours of sleep,

2 frozen feet,

And a life time of misereee.

Can't Miss What You Never Had

Of all the things that will be said over my incinerated remains (I want to be cremated; can't stand the thought of being a preserved body) at my funeral, my undying patience will not be one of them. Never having been a patient woman, I don't miss my patience because it was never in me. I try, but can't seem to muster it up for long and find that it leaves me as quickly as it came (hmmm, is that the theme of my life?).

Yesterday was a snowy, yucky kind of day. I would normally not leave the house under such conditions, but if I didn't get dog food the dogs would have revolted and there might have been an ugly hostage situation. Wanting to spare my dogs jail time, and also having a deep conviction that humans have a choice over their food while my animals don't, I ventured forth to get them their food. It was snowing pretty good and the roads were mostly snow covered with limited visibility. I was going the posted speed limit where it was safe to do so, but there was a dill hole on my arse that didn't think snow packed roads were a reason to drive safely. For the record, I don't drive overly fast and I don't drive like I am in a parade, waving to the spectators as I poke along. I usually try to stay near the speed limit, only allowing myself about 5 miles over it -- not being able to afford a ticket or having a good reason for speeding, I have no where to be at any certain time. So to have my hind quarters ridden like that really irritated me. I slowed down to let said dill hole know I didn't appreciate him/her/it/thing 2 trying to climb into my back seat. As soon as there was an opening, they went to pass me. Just to make sure there was no gray area about how I felt about their driving, I rolled down my window and stuck my hand out with only one finger prominently displayed while they were going around me. After they had passed, I wanted to leave them with a loving reminder of my feelings towards them, so I drove on their hind quarters with two hands up and my middle fingers out long enough to make sure they couldn't miss my gesture. After they had sped along (I was disappointed I didn't see them later in a ditch; I'm such a forgiving person!) I thought about my lack of patience and what could have happened if they had been "packing heat." Not sure what the gun laws are in good ol' Nebraska, but I am sure not everyone cares about them. I figured at best I would have been picking buck shot out of my aft end, at worst they would have been up on murder charges.

Telling Sugarbowl about it later, she said that whenever she loses her patience like that, she worries that she will see them again and things will get ugly. That didn't cross my mind. I had rather hoped to see them again to give them an uncensored piece of my mind. Maybe as divine punishment, I broke both naughty finger nails later that day. Not that that will stop me in the future; so I may have a session of picking buck shot out of my butt cheeks looming down the road somewhere.

One other thing of interest from yesterday then I am off to get some stuff done around here. While waiting in line at Target to buy the cutest set of pajamas for Princess, a woman in a full length fur coat, nails done, hair perfectly coiffed, and all fancy looking, told me she loved my hat, it is "soooo cute!" I was wearing my stocking cap with the eyes and ears on it, not exactly fancy stuff, or too mature for that matter. I thanked her but couldn't help wondering if someone who gets all decked out on such a rotten day, when there can't be too many people to enviously observe her, could possibly like such a hat. And, of course, me being rather pessimistic yesterday, it crossed my mind that maybe she just wanted to make the gimp feel good.
An unfair thing to think, I know, but I can't help it. I am always suspicious of people being too nice to me, especially when I am cross and foul and not exactly walking around looking like a pleasant person. Or maybe she was impressed that someone would actually leave the house wearing such a thing, it being so cheap and tacky! I really don't care one way or the other. I am most comfortable being cheap and tacky.

Finding Myself

*Author's Note II: Brace yourselves. What I am reading right now (or at any time, really) is a list of books that show how truly geeky I am. I can't get enough of history in any form and read many books that bore the shitakii out of those around me. Right now I am reading Boswell's Life of Samuel Johnson (considered the best biography in the history of forever); a biography of Boswell himself (considered a buffoon whose ability to write such a masterpiece is still a subject of amazement); a bunch of books on castles, palaces and other "stately" homes (I just pick through these kinds of books, I don't usually read them cover to cover); a study of prehistoric sites in Europe; and the last major subject to hold my short attention span right now is the bog bodies and what they reveal about life in the times of their ugly demise. Princess hates the bog bodies: they creep her out and if I mention anything related to them after dark I will need the jaws of life to get her out of my bed. I have a few other odds and ends that I am picking through, but those are the books I am reading right now.


*Author's Note: Not sure if I mentioned this on here or not. I can't remember and am too lazy to check and see. Being a blogger of many words makes digging through old posts a chore I don't want to take on sometimes. So if I am repeating myself, which I do a lot, please bear with me (not to be confused with "bare," we don't need a bunch of naked bloggers driving the boys/girls wild).

One of my goals in leaving my husband -- amongst other reasons -- was to try and find myself again. Somewhere along the line I forgot myself and became a mess of MS (EEEEK!). My ex ass master of a husband understood this because he said that he missed the old me, when we were first together, before MS came to town, stole my life and I only got a lousy closet full of MS-related T shirts. My little sister echoed this sentiment and when 2 people in my life agree on something I am forced to consider that there may be some truth to what they are saying. If only one person says it, I don't worry about it too much. But 2 people will actually make me listen. Like when I was shopping with my older sister this summer and saw a summer dress that I was thinking of buying. My little sister already told me that I would never wear it and it would only hang in my closet with tags on it because I would be too self conscious if I wore it oot and aboot. My older sister, when I showed her the dress, said the same thing, so I put it back on the rack, cursed my lack of feminine wiles and stayed with ratty cut-off jean shorts and shirts that are more holes than shirt -- the uniform that I am most comfortable with. I have to admit that they are right. I probably would never wear a dress because I would be uncomfortable wearing one and would feel conspicuous out in pubic if wearing one. But that doesn't mean it wouldn't look great hanging in my closet until I donated it to the Salvation Army with tags still on it -- an occurrence that happens all too often in my life. The Salvation Army loves me. They know they are getting things never worn or used and that I wash (if it was used), organize and label all the things I am giving them, which makes the job of sorting easier. ( *Sigh* Why am I so anal and organized? Why can't I just toss it all in a bag, willy nilly, like my little sister does? Alas, it is just not in me to not organize and put related items in separate bags with the proper labels on the bags.)

Last night, while lying in bed reading, I realized that I was doing something that I hadn't done in a long time. Something the "old me" used to do all the time. When I was still single I used to keep books on the side of the bed that I didn't use. I tend to sleep only on one side and maybe sometimes towards the middle, but never on the opposite side, so I used the unused side to keep the books that I like to read at night there. I hadn't done this in a long time, not having a bed all to myself and an extreme slowing of my usual reading while in the throes of trying to come to any kind of terms with this disease (guess that would be a loss of usual interests). So when I grabbed 3 books to take to bed with me (not as impressive as it sounds. I read historical non fiction and like to be able to compare the statements of one book with the opinions of another, so I cross reference my books.), stacked them up on the other side of the bed, and slept with them there, I had a major realization that I was finally starting to get back to myself. First, I was reading like I used to, before I lost interest in everything. B, I was stacking them up in my bed like I did in the old days. And quatro, I was sleeping with books in my bed again. Oddly, I like sleeping with books in my bed. I like going to bed to read and digging through my pile on the other side to see what I want to read that night. And when I realized I was doing that again, when I hadn't done anything like that in a lllllloooooonnnnngggggg time, I felt I was making a step towards finding myself again and, to be honest with you, it felt really good. It may not sound like a big deal to anyone else, but it is huge for me. Books are the biggest joy of my life and the only thing I want to share a bed with; so to get back to my old passion for the printed word feels great, feels closer to where I want to be. Baby steps, people, baby steps...

My Legs!

This morning -- if you can call 3:40am morning -- I awoke to terrible pains in my right leg. My leg was cramping, releasing, cramping, releasing, to a tune of pain all it's own. My right arm was stiff and I could feel contractures trying to get a hold on my poor right limbs. While lying there thinking about the lesion that is low on my spinal cord that the doctors were so worried about when I was diagnosed, worried about how big it was and the threat of it getting bigger and taking my legs from me, that didn't sound so bad this morning. I can't imagine an amputation and a peg leg to be any worse than legs that hurt and cramp all the time. And while I enjoy the thought of step, thump, step, thump, I'm afraid they would forgo a peg leg in favor of something more modern against my wishes.

I was not happy to be awake so early: I turned off my Hello Kitty lamp and turned away from my Hello Kitty clock at 10:45 last night and was looking forward to a good amount of sleep, having only napped an hour yesterday. I am now setting the timer on the stove for an hour when I want to nap, and have given strict instructions to my roomies to not turn it off; to let it wake me up and make me turn if off, no matter how annoying it is for them to listen to it buzz until it rouses me. I set the timer, race to the couch and hurry to get to sleep, not wanting to waste a precious minute of my beloved nappy time. Most days it has worked for me. I even got 7 hours of sleep the other night, which put me in such a good mood I made pancakes for breakfast for everyone. But when I woke up this morning and calculated the amount of sleep I got, I could feel the deep frown on my face and the frown lines forming faster than usual, even while fantasizing about peg legs that don't torture me and steal my sleep.

Lying there with the hideous pain in my leg and the numbness in my right arm, I started to think about my current neurologists and wondered how they were sleeping. After a long day at the office of telling people what their disease is and what it is/is not doing to them, do they go home and play with the kids, make dinner, maybe work out a bit and go to bed for a nice 8 hours of sleep? They get to leave the MS behind. They don't have to deal with a disease that makes me so friggin tired making dinner can be overwhelming some days. And to exercise at night is to put myself at great peril: it messes with my vision and I am too tired and clumsy to do any exercising safely at night. I want to spend more quality time with Princess and it bothers me to think that she has to live with an aunt that has so many limitations on what she can do. Who goes to bed early because her night meds lower her blood pressure to the point she gets light-headed unless laying down but if she delays taking them is in too much pain to function. That she has to tuck me in at night and not vice versa.

I was thinking about what my shrink said my neurologist said about my disease and how it was going. That it is "under control," I am not currently having any problems, and my disease accumulation has been drastically reduced since my starting Tysabri. I have an appointment with her coming up soon and I have a few things to ask/say to her, things she may not like because she obviously has not been listening to me. Tysabri has greatly helped me; this is my first major attack (I've had a few new problems since starting T. but not a full on attack like this) since starting it. I still have the nicking away and slow deterioration though and I would have thought she would take me seriously when I told her of the new problems I have had. Or noticed the way I walk has gotten worse, or read other doctors' reports of their findings. I have to see different specialists for different things, like my vision. Did she even look at the report from my opthamologist before wiping her pompous behind with it? That my vision is getting worse? These are things I want to know and intend to get answers to.

I am sick to death of others telling me what I am feeling and it is stopping here. No more Ms. Nice Blindbeard. I obviously have not made my point and my neurologist is not going to be pleased when I drag my peg leg in to see her in a few weeks. Lack of sleep, abundance of pain and no one listening to what I have to say about my own body (and I am not a hypochondriac or one who freaks about any new problems) has made me reach my breaking point. I am on the war path and ready to crack some thick skulls. I'll keep you updated on how it goes.

Duck And Cover

Every time my little sister and I fight everyone else ducks and covers and is glad it isn't them she is fighting with. Blessed with a vicious temper when angry and the propensity to say horrible, hurtful things when mad, no one wants to tangle with her. Being the older sister and having a thick skin, I will take her on and have zero tolerance for her ill temper. Sometimes I think I am the only one she will listen to, and she even admitted (when we were not fighting) that she values my opinions whether she agrees or not and will listen to what I have to say over what anyone else has to say. When she was still married to her ex husband and I would call when she was mad at everyone in her house, they would still give her the phone. It didn't matter if she was trying to sleep off her anger, they would still run to give her the phone, tell her it was me, and run away before her anger could remove their spinal cords for having the audacity to speak to her. She and I have been fighting for 30 years now and have it down to a science. We argue and bicker, stomp off mad, then check to see if the other is done being a female dog, and go do something together. Her men seem to always be the submissive sort. I opined that anyone with a backbone would not take her crap for long and she opined that I am an ass master who needs to shut her flapping meat curtains, then we tried to make a batch of egg nog that was not so high in calories.

Right now she is in a BAD mood and thinks she is depressed and that is why she is vomiting split pea soup -- Exorcist style -- all over the rest of us. Her bf/f and Princess are trying to keep out of her way and "yes ma'am-ing, no ma'am-ing" her depending on what they think she wants to hear. I know better than that. Giving in to her foul moods does her no service. She needs someone to stand up to her and not take that sh*t from her and as no one else will do it, it falls to me to take her wrath and be covered in split pea soup. I would feel bad for her being depressed if my life was better than hers. But its not. As far as I can tell, what does she have to be so depressed about? She has a job so she gets some social interaction. Said job gives her an income, which I don't have. She isn't the maid to 3 slovenly pigs, that job fell to me because no one else will do it. She has a man that thinks she's the bee's knees, and no one (and I mean no one) thinks I'm the bee's knees because I'm not. She gets to come home to a clean house, meals made already, and everything kept going while she was gone. No, I have no compassion for her "depression." I know everyone has problems in their lives, MSers don't have the corner on that market, but she is boo hooing to the wrong person. Maybe if I didn't have to pick her hairballs out of the shower drain I would be more sympathetic... or maybe not.

Last night we were fighting over who was fatter. She outweighs me by over 30lbs, yet still claims I look fatter. I told her I only looked fatter because she can't see her own ass and I got T.P. with dimples on it to match her hind quarters. From there is disintegrated into a bunch of name calling that went no where until she wanted me to taste the egg nog and see what I thought. I will gladly take her wrath over the other occupants of this house. It doesn't bother me like it does them, with their heads hanging and trying to avoid eye contact with her. I told her we were going to go rounds soon if she didn't knock it off, and she knows I mean it. She doesn't want me to start putting those hairballs from the drain on her side of the bed, so that helps slow the word diarrhea from her mouth a tiny bit.

Chasms

I don't know about any of you, but sometimes my days gape open in front of me with too much time and not enough of anything interesting to do. Most of you probably don't have this problem because you have lives and jobs and hobbies. I have hobbies, but sometimes there is so much time I can't get myself to sit down and work on any of them. The sheer amount of time in front of me zaps any creativeness I may have and makes me dull and void of any creative ideas. I get out of bed and survey the chasm of time in front of me, rolling out with no end in sight, and I wonder if this life will ever have anything interesting in it again. I clean, I run errands, I cook and keep Princess going in the right direction, then I go to bed and think about the lack of stimuli in my life. When the most interesting thing in my life is watching my hamster, Gorgeous George, make a new nest after I've cleaned his cage and stuff his gorgeous cheeks full of food to stockpile in the corners of his new nest, I can't help but feel I need something, anything, of interest to happen to distinguish this boring day from the one before and the one coming up. I think my inability to get more than 6 hours of sleep, when I've never had this problem before, is due to an overwhelming boredom with this life and my pathetic jogging along in the same old ruts all the time.

Yesterday the highlight of my day was a fruit fly flying up my nose. I snorted so hard, to get him out, I popped my eardrum and it still hurts. Why we still have these damn fruit flies is an annoying mystery. I make sure no food is ever left out, I keep all cages and cat boxes clean, and I always rinse the sink very well if food is ever put down the garbage disposal. Yet these little boogers won't die. Every morning I pick out at least 2 from my coffee before I can drink it. Everyone else is horrified that I would still drink the coffee after that, but I only make the amount that I will drink and it is hot enough to kill any germs, besides, I don't really care. Goodness knows we eat/drink a lot of grosser things without knowing it, so what is a little fruit fly going to do to me? But I still don't want them taking up lodgings in my nostrils. I have to draw the line somewhere.

When everyone else is gone and I am left in a house that I can't possibly clean one more time, it being clean (for the most part) already, and I have no where to go and nothing to do, I start to feel like the last kernel in the canister, rattling around by myself. I don't have any money to do anything, still fighting the ^&@ SSA, and even if I had money, I don't need anything more. Princess doesn't need anything else, she has too many clothes as it is from all my shopping to try and fill the endless chasm of time. I can't possibly buy one more article of clothing when I have too many clothes with tags on them still, just sitting there waiting to be worn. I tear up the library and read so much I have to keep changing topics to read about. The list of things I read about is embarrassing and very diverse. I will read anything when I am out of books or have exhausted a subject (either from my own saturation with it or the library's not having any more books on that subject). I have a head full of useless information that helps me not one whit. The ladies at the library like to ask me what got me started on a new subject, and I get embarrassed trying to explain why I suddenly took an interest in the burial customs of the plains Indians, which is really interesting stuff, by the way.

All in all, I have something most people claim to want: too much time on my hands, which makes me think of that Rolling Stones song, "tiiiiiiiime is on my hands, yes it is!" Some time is good, too much time is a cancerous poison that destroys all interest in my usual diversions. Is it wrong to want something interesting to happen? Something different and unexpected to break up the monotony of my days? If that is wrong I have no desire to be right.

One Small Step For Gimpkind...

Sunday Princess had basketball games all day. They had a tournament with 2 games back to back, only 8 minutes to rest before the next game, then we had to drive to a small town 30 minutes from here to get them to the next game. I felt sorry for the girls, they were so tired and not up to their usual standards -- except Princess. She is not as aggressive as she could be and to help get her into the game we started offering her $5 for every foul and $10 for every basket. If she plays really good we decide on an amount afterwards. Princess, with visions of moola dancing in her head, went out there and gave 'em hell. It cost us $10 apiece -- my little sister and I both pay her -- but it is worth it to see her get into the game.

After the tournament and before we had to mosey to the next game, the rest of the parents decided to take the girls out to eat and they invited us to come along. We had a little less than 2 hours to burn and wanted them to get a chance to fill their bellies and relax a bit. In the car we went back and forth about whether or not we were going to go. Princess wanted to. She wanted to hang out with her team and the restaurant they were going to had games for the girls to play. Sugarbowl and I were a little more reluctant. Neither of us had put on any makeup and were wearing ratty old sweatshirts. (Of course I had to be wearing my stocking cap with the eyes and ears on it; I couldn't possibly leave the house looking somewhat mature.) Sugarbowl is really shy, both my sisters are, so she was a little nervous about hanging out with people we don't really know. I'm not shy, but I am uncomfortable in crowded places where I have to walk in front of people, especially wearing a stupid hat. Sugarbowl decided that we both needed to leave our comfort zone and just do it, that and she was driving so I had no other choice besides sit in the car like a dog -- I chose to walk in front of people. I have to admit that it wasn't as bad as I was worried it would be. I did have to go to the bathroom and use my little sister's arm for support to walk across the whole sports bar to the W.C. But I chose to not look at people and see if they were trying to figure out what I did to my leg; its just better to "not notice." The only downside was the service. I waited tables for years, so I am always ready to understand and forgive any problems in service, but this was ridiculous. Our food came out at widely separate times: the first people served were the last to arrive, and the last of the food was a good 30 minutes behind that. We were really short on time and the last meal to arrive was one mother's chimichanga. Her husband, in between busily knocking back as many drinks as he could, told her to just eat the whole thing in one bite. He said to stick the whole thing in her mouth and show everyone how she can do that. She was so embarrassed I didn't want to laugh, but in the car we hooted over that one for awhile.

All in all it wasn't that bad. It made us feel like a part of the group of parents there. I was ready for the questions about what is wrong with me, but no one asked. I can't help wondering if maybe because my older sister has lived here for 17 years and everyone knows her husband, they already know what is wrong with D's sister-in-law. It was refreshing to not have to explain all the ins and outs of my disease. I just wish I had dressed better and picked a better hat.

Why Am I Awake?!

I first rolled over to see what time it was at 3:20am. My tongue had just unfurled from my mouth dryer than the Sahara desert and with probably more cacti on it. My nostrils were so stuffed I was unable to get a decent breath through them. Trying to get a molecule of air through my nose gave me a nose whistle and when I started trying to whistle out Jingle Bells, I got disgusted and gave up on any more sleep tonight. My pain meds had ran out on me sometime earlier, leaving me alone in the bed with a tooting Midget and a note telling me that it was great, but not great enough to stay all night. I raised the white flag and stumbled to the bathroom for water to moisten my poor mouth. I douched my nose (think it is technically called "irrigation," but I like to use the word "douche" as much as possible), brushed my teeth, took my meds, started my coffee (always the kiss of death for any hope of sleep after that), and here I sit: cross, sick, in an attack that just keeps dragging on... and on... and on... Princess was sick earlier this week. She lolled around on my couch, hogging it up and coughing all over me, no matter how many times I gently reminded her to "COVER YOUR DAMN MOUTH WHEN YOU COUGH!" So now I am under the weather and frankly, my dears, it is getting very old. Princess has a basketball tournament all weekend and I am not sure I will be able to make it. I really want to go; I love watching her games, but I'm not sure I will make it. The shrink sent me a very nice form letter to let me know I need to come back in for a follow-up visit because that is very important when switching meds. I don't really care to run back down to the ghettoooooo ("and his mama cries") but know I need to.

I think I had more to crab about, but Midget just puked and ate it before I could get paper towels. I think I'm gonna be sick...

Dear (John) Paxil,

We have been together for almost 7 years now, 7 glorious, fabulous, non-anxiety ridden years. And while our time together has been great, I feel it is time for me to move on. Its not you its me -- okay, it is you. You just are not meeting my needs anymore. Once upon a time you were there for me. You cared and shrunk my mental problems like no one else could at that time. But not anymore. Now you are falling short of the high standards you once reached and are no longer able to meet the needs I have to get my depression under control. You have been great with my overwhelming anxiety and cycling thoughts, but now I need something more, something you cannot give me. I need something to help me get back to myself, make me feel better while stopping the hideous anxiety I have at the same time. It breaks my heart to have to leave you and I will always have fond memories of you and I cuddling on the couch and watching Spongebob together. The peaceful nights you gave me, the calm days when I could venture out of the house without worry about a panic attack rearing its ugly head. My dear dear Paxil, please try to understand, there are others out there who really need you right now; you have so much to offer those with lesser degrees of mental problems than I have, non-MSers who do not have so much nasty stuff going on it their heads. It just wouldn't be right to keep you all to myself when you could do so much more if I set you free.

I need to be totally honest with you and admit that I have fallen in love with someone else. It was not a premeditated thing, it just happened. I still want us to be friends and when we see each other out and about, to be civil to each other. Even though I have 2 new loves right now, please don't think me a whore. I found that just one of you will not do for me anymore. Don't hold it against them, hold it against my neurologist and shrink, they felt I could do better than you and I have to agree with them. Why settle for less than what I need? And you are less than what I need.

I need to spread my wings and get back to life in a way you cannot help me with or be a part of. I won't forget our 7 years of happiness and will always think fondly of you, but I must go now. Please don't try to contact me, I will contact you if need be -- but don't hold your breath. Go and find someone better than me (good luck!), someone you can help, someone who will appreciate the peace and calm you can provide, because it isn't me anymore. Goodbye, Paxil, and fare thee well.

Love,
BB

Bringing Myself Up To Speed

Where have I been, you may be asking? I feel like I have been in a coma for the last week or so. Getting acclimated to a higher dose of Neurotin, trying to keep up with all the itchy spots that need scratching, and a life of absolutely nothing interesting in it have all combined to put me into a deep sleep Rip Van Winkle style. When I awoke from my sleep I discovered a house that nobody had done anything in while I was asleep. The trash stacked up in an embarrassingly high pile, laundry up to their eyeballs (yet still unnoticed), and dishes that blocked the sink and made it impossible to use. So with all that, let me do one of my favorite things and break it all down with fun bold titles and get myself back on track so I can commence my usual blather.



Shrunk

I saw the shrink about a week ago and she was wonderful! I was really dragging my feet about going, not being a person who likes to talk about my problems whether they are professionals or not. I told myself I was going to be 100% honest with her so that I can get on the right meds to help me get back to myself again. I drove down to the ghetto to her office, right in the middle of a bunch of boarded up houses and with men wearing shower caps and pushing filched shopping carts with all their worldly belongings in them walking around. I wasn't even remotely worried about them, most of them waved to me anyway, obviously knowing a kindred soul when they see one. The only difference is that I don't know where my shower cap is and I would need quite a few filched shopping carts to push around all my crap. I told her I wasn't impressed with the location of her office or the parking situation -- it was a block away and not a great idea for us gimps who can't walk very far without some kind of support. Sugarbowl asked, in shocked horror, did I really say that?! I asked her how long has she known me and she had to concede that, yes, I really would say that. The shrink tweaked my meds and I am still trying to get acclimated to those. I'm getting a little tired of all this acclimation in my life and look forward to being used to all the crap I have to swallow throughout the day.


This house!

After almost 10 loads of laundry, I think I may be able to see the laundry room floor in places. I have been on almost constant laundry detail and cursing my lazy roomies under my breath. I love living here, with my little sister and my big sister 2 blocks away. But, gods help me, I wish they were not so lazy (not my big sister, Mellow Yellow)! I have been under the weather with all this attack-y stuff going on and trying to get used to new/higher dosages of meds and nobody noticed that they were tripping over the messes everywhere. Now that I have woken up I have been cracking the whip over them and assigning chores to my fellow inmates of this house, much to their delight. They run away from me when they see "that look" on my face, knowing I can't possibly run after them, and even hide from me sometimes. They have to emerge sometime and when they do I am there waiting, with a chores list in hand to beat them with. I had to threaten Sugarbowl that if I have to pick one more of her hairballs out of the shower drain, I am going to put them on her side of the bed. I haven't had to pick any out since then, her knowing that I mean business. (*Side Note: Princess said that now that so much laundry is done, her closet looks like mine: stuffed full of clothes I never wear. I wanted to argue that statement, but I couldn't, knowing that I resemble that remark.)

Has Anyone Seen My Sleep?

I think having been comatose for too long I am too well rested to get any good sleep anymore. I have been setting the alarm so that I only get an hour of nappy time so that maybe I can get some sleep at night. Alas, it is not so. I'm lucky to get 5 hours of sleep at night no matter how little I nap during the day and it is getting old. I toss and turn and it takes me forever to get to sleep at night. I am not used to this. I usually fall asleep so fast I have to hurry up and get myself in a good position -- make sure the covers and pillows are just right so I don't wake up stiff or frozen from them being wrong. I don't know where my sleep has gone and I have checked every inch of my bed: under the pillows, in between the blankets, even under the sheets all to no avail. It is no where to be found. So if you find my sleep, please send it back to me. I really miss it and am sick to death of getting up at 4am. Princess says that anyone who gets up that early is not normal. I say, "Duh! Have you met me?"


Does Anyone Else Lose Their Appetite From A Higher Dose Of Neurotin?

Talk about a catch 22! If I don't take the higher dose of Neurotin I am hungry but in too much pain to eat. If I take the Neurotin, which I have to, knowing that you have to keep a certain level in the body and not to suddenly lower the dose, I lose the desire to eat and if I do eat it makes me sick. Pants that used to hug the life out of me (what I lovingly call my denim girdles) are getting loose. Sugarbowl says that all the weight I have lost she has found. I wouldn't mind some weight loss, but am concerned about my body going into starvation mode and saving every bite of food as fat for the next medicine-induced famine. I nibble at food throughout the day, making sure to only eat enough to take the edge off any hunger, otherwise the nausea will kick my shrinking buttocks. I'm curious if anyone else has this problem.

There you go, pigeons, that is where I am at. I have barely been on the computer at all and need to get back to your blogs and see how you are doing. I miss you guys and am really missing what you have to say. It is so refreshing to read blogs that say what I am feeling, usually in much better wording than I could come up with.

Feel My Pain

I enjoy my mornings all to myself. I like to get up, stumble out the back door to let the dogs out while having a smoke, start my coffee, brush my teeth, throw my morning meds down my gullet, and get on here to play some text twist to jump start my slow brain. No one gets up as early as me and I like it that way. I get some time to myself to prepare for the day; a time to do my own thing in peace and quiet before everyone staggers out of their beds to harass and annoy me for the rest of the day. But not today. My 7 year old nephew is staying with us this weekend and I don't call him and his sister Talk-a-hontas and Jabber Smith for nothing. I barely had 3 minutes to myself when he boiled out of his sister's room, saw me up and started a running commentary on anything and everything he could think of. He had to catch me up on everything that I might have missed out on while we were all sleeping and then some. He started to play Wii and I sat here trying to do text twist with him looking over my shoulder suggesting words that didn't have all the letters for me to make and asking me what every word I got meant. When not trying to "help" me, he was asking me a million and one questions about the game he was playing on Wii, a game I haven't played and know nothing about.

Jabber Smith: What do these bombs do? Why is that guy over there?
Blindbeard: Stop picking your nose!
JS: What does "smite" mean? How do I get those bombs? Look at me do this!
BB: Do you need a Kleenex? Stop picking your nose!
JS: Watch me! How many times have you done this?
BB: Your going to make me sick! Get your FINGER OUT OF YOUR NOSE!
JS: Try "DOD." Darn! I missed that one! Look at this! Do you miss that one ever?
BB: "DOD" isn't a word. Your going to make your nose bleed. Go get the Kleenexes!
JS: Why aren't I moving? C'mon! They cheated!
BB: You have to hold the control the right way. If you eat that I will puke all over you!
JS: Dude! How many of your cats are boys? Do you have any girls? This one looks sad!
BB: Don't you dare try to hide eating that! If you don't get the Kleenexes right now I will PUKE!

And so on. My brains are fried and I can't even finish a thought between his constant chatter and my need for constant vigilance to make sure he doesn't find any snacks in his nose. I had to go get the box of Kleenexes for him and put them right next to him. It still didn't stop him from trying to hide under a blanket to pick in peace. I ripped the blanket off him and tossed the Kleenexes under there and threw the blanket back over him. He claims he is done with his nose, probably because he got tired of hearing about it, getting caught and not having his excuses for having his finger permanently embedded in his nose accepted. I wasn't hatched yesterday and I've had kids before. That and I really will puke if he doesn't stop it and if I puke I am going to do it all over him.

I Hate Holidays

I hate them with a burning passion and if I was all alone I would never celebrate them. If there was not a kid in the house I would ditch this whole merry orgy of consumerism and bah humbug it all. Not that our Christmases are over the top, we tend to keep it on the modest side. I can't stomach celebrating the birth of Jesus with a pretentious display of a mountain of gifts. It just seems wrong to me. Frankly, I really don't want any gifts at all, but my family buys for me anyway -- usually good stuff too. The only things I ask for are things that will help me in my day-to-day life, ie a good mop and bucket, or better cooking pans -- what I call "mommy gifts," gifts that help you do more for others. I hate the pressure to keep up and make it all great for everyone else when my overwhelming lassitude makes me want to heat up a TV dinner and lounge on the couch all day instead. I wanted to get a miniature tree, but no! we have to pull out Big Ugly and decorate it. I have a few great ornaments (Gone With The Wind, where Atlanta is burning and Rhett and Scarlett are outlined by the flames that actually light up) so that is a small consolation to having to play nice for another year.

Yesterday I announced to Sugarbowl and her bf/f that I am done celebrating any holiday, and I mean any and ALL! I hate them all equally so I am giving them up. I am not going to plant any trees -- even though I live in the state that started that one -- I will not send or accept any Valentines so just flush them down the toilet and spare me that trouble. I am throwing away my Viking hat and long, braided beard and will no longer observe Leif Erickson day (ding-a-ding-a-dorgan!). I am even ditching Daylight Savings. Sugarbowl said no one celebrates Daylight Savings; its not like people are dancing in the streets singing, "Yea! We get to set the clocks back/forward!" But I am not one to discriminate, so it must go. She can't wait to see me try to get to places on time if I reject Daylight Savings, but I will have the last laugh! I never have any where to go or be at a certain time and if I do have an appointment, I will merely explain that I don't celebrate Daylight Savings so could they please convert that time to non-celebraters time? I mean business and am sick to death of them all. Why should I have to be cheery and celebrate when I don't want to? I won't do it anymore. I'll buy stock in TV dinners and keep the couch company.

I hate all this Christmas music that starts earlier each year and when I go to a store that is playing Christmas music already it irritates me and seals my wallet shut. I won't go to church on Christmas because I have had to sing those songs too many times in my life and they do nothing for me. My little sister says it is uplifting and gets her in the Christmas spirit. I sit there bored stiff, start fidgeting, and wondering how much longer until I can get out of there and go to bed. I detest hard boiled eggs, candy canes, conversation hearts and mince meat pies. I do love pumpkin pies though, and my big sister is a cook that could bring a thousand men to their knees, so that is a small score for the holidays. But other than that I am standing firm on my decision to quit holidays, I'm even going cold turkey.

I'm Crabby

I don't mean to be, but when you are in pain and your whole body feels uncomfortable it tends to make one crabby. Yesterday, while lying on the floor trying to rest to get ready for Princess' basketball game, I was so uncomfortable and achy I started picking on everyone around me. That was not one of my better ideas. (Note to self: Don't start fights with others when you are unable to defend yourself.) They took my verbal abuse for about 7 seconds then retaliated. I scratched the bottom of my little sister's feet really hard with my long nails and she thumped me so hard on the forehead I think she fractured my skull. I moved on to Princess, with a stinging lump on my forehead, and she kicked my shin then dog piled me and mashed my boobs into one uni-boob. Not content with my battered, bruised and beaten body, I kept picking at them. Sugarbowl lobbed a ball of yarn at me and hit me in my bad eye, ie the left one. Princess gave me a wedgie and kicked my other shin to even out my pain. I raised the white flag... kind of. I writhed on the ground boo-hooing that I need a CT scan to see if I had brain damage and that I thought my shins were broken -- not to mention I think Princess' wedgie widened my crack and left it bleeding. I was no match for their loss of patience for my crabbing, so I took on the dogs. Unfortunately they saw me coming and ran away before I could annoy them.

Usually at Princess' basketball games the people are as rowdy as we are, but not yesterday. It was like a morgue in there. My little sister (Sugarbowl) has a voice that carries -- a nice way of me saying that she is LOUD! I told her I didn't know why we paid for a phone when all I have to do is tell her what I want to say to someone, put her outside and point her in that direction and have her bellow it. I got a good whack for my wittiness, to add to my other injuries. I told Princess that next year her mom was going to coach the bball team. She's going to stand on the porch with binoculars and yell what she wanted them to do. Sugarbowl's bf/f laughed and got his own bruise and my respect for daring to laugh at Sugarbowl. Usually no one stands up to her but me -- a bonus for being the older sister. So we went to this away game where the people obviously keep their dead in that town, it being so quiet we were like bulls in a china shop. My little sister thinks she has the flu right now: she has been voiding material from both ends for a few days. Yesterday she was feeling the bowel end of it all and spinning almost constant conversation from her behind. So we are in a dead quiet gym and she rips one that rattles the whole bleachers. I thought someone with rubber soled shoes was rubbing their shoes over the bleachers, it was that loud and long. Normally I fake that it wasn't me, but she turned bright red when several people looked over in our direction, giving her away and showing my innocence. She was so embarrassed that she made us move to the other end of the gym. Not an easy task for a person with MS. She pretty much dragged me to a new spot because she needed to move NOW! She sat us in a corner by no one else so she could continue spinning her conversations out her butt like a spider spinning a web. From there the day was pretty uneventful. We cheered and she farted with regularity and volume. I finally got home way past my nap time, sore and bruised for my bad attitude and too close to my next dose of meds to take the one I missed, so I was hurting from that too. The Neurotin kills my appetite and makes me a little fuzzy in the head, but the whole being-knocked-out thing is getting better. I'm starting to be able to function with the higher dose. I hope it continues to help me and my bad attitude. I don't have many places left without a bruise right now.

What Is Wrong With Me?!

Trying to acclimate myself to a higher dose of Neurotin is kicking my butt. I spend 90% of the day sleeping and the other 10% trying to get something -- anything -- done. That 10% is spent scratching my itchy spots, which there are many right now, grabbing the funnel and crunching up Pringles and cake donuts to funnel down my throat before the Neurotin kicks in and I go back to being comatose. Yesterday I was snarfing Pringles and sunflower seeds when I fell asleep. I woke up with crumbs all over my shirt and even a few sunflower seed shells stuck to me. How revolting! I was irritated that the dogs didn't clean me up while I was knocked out. When I'm awake and eating they won't leave me alone. I fall asleep with a feast on my shirt and they can't be bothered. But they sure found the time to rip apart their water bucket and the garbage. There were plastic pieces all over and chewed up paper towels scattered all over the floor. It took me a few hours to come out of my haze to clean it up, after I cleaned myself up first, of course.

These itchy spots are going to drive me crazy... well, crazier. My palms itch like mad, especially my right one, this attack (don't care what the neurologists say, I know my body) is killing my face/ear, making my right leg spasm and clench up, which is very painful and making my muscles very sore, and these itchy spots! My head itches so I have to dig in my hair like a flea ridden dog. I told my little sister I thought I had lice and she ran off before I could tell her I was kidding. She would believe that because I love to go to thrift stores and try on the hats, which she is convinced are crawling with lice, but I haven't gotten lice yet and even if I did it is worth it to try on those great hats. My right arm and leg crawl constantly to where I have dug up the skin in places. But the relief of a good scratch is worth a scabby body. Again, my little sister says I look like a person with a skin disease, I am so scratched and scabbed up. Maybe I should consider clipping my nails short, but it feels too good to scratch for me to care.

I am feeling so negative about myself and this disease right now, I am not fit for human consumption. I would suggest throwing my carcass to the hogs, but I know there are ignorant people out there who would not eat the pork because it might have gotten tainted by the MS, so I may have to reconsider that idea. I haven't been taking my vitamins or other supplements that I'm supposed to take because I don't care about myself right now. That may not sound like a big deal but I take them religiously so my not taking them says a lot about how I am feeling. I'm so tired of being a piece of crap and having all these problems that make life a burden, but I can't tell anyone around me that because they would worry about me. I know I'm in a down pocket right now, but I also know it is situational. Once I start to feel better I will take an interest in the things that usually amuse me. Right now I am putting on a happy face when everyone is around and pretend I'm getting along okay, even though I'm MAD MAD MAD. Somewhere along the lines everything got messed up. I never wanted to be a crippled gimp who is very limited in what I can do. I wanted to do so much more with my life than struggle to be somewhat normal. I was going to school when I was diagnosed, I was doing foster care and looking to adopt. I wanted to do more volunteer work, not less. Now I don't know what I'm doing or why I'm still here. I can't seem to find my way, or any purpose for this life. It frustrates me to be unable to do the things I want to do. It infuriates me that I am dictated to by my disease and when I try to override it, it always gets the last laugh -- I fall or get clumsy and hurt myself or the fatigue wipes me out too soon. I'm sick of being called "sick" because I don't think of MS as an active sickness. I can't go to bed for awhile and drink lots of fluids and be better after enough time. I'm not "sick" in the sense that I think of sick. There are no pills to cure me. No surgery to make me all better and my body is healthy, it is just my messed up immune system that wants to attack my (tiny) brain and spine.

Sorry to go off like that. I get so frustrated and angry sometimes I just have to let it out. I seem to orbit around the "anger stage" more than anything else. And nothing makes me angrier than an attack and neurologists who try to tell me otherwise. The good news is, I go to see the shrink in a few days so maybe a tweaking of my psych meds will help even me out and help me find a new path for this life.

This Whole Safe Haven Thing

I try not to get too political on here, or too religious. I respect others' opinion even if they differ from my own and don't want to ostracize anyone for having a different point of view from my own. In fact, I sometimes enjoy an opposing opinion because it is a good way to see something from someone else's standpoint and can educate me on issues that I may not be up to date on. So if you can forgive my venturing off my usual path, I want to say my piece about Nebraska's safe haven laws than go back to being a zombie from having to up my Neurotin.

The safe haven law is set to change in January to only babies up to 3 days old. I disagree with this wholeheartedly. I did foster care for 3 years before being diagnosed and no neurologist will allow me any kids anymore because of the aggressiveness of my disease and the possible detrimental effects from the stress of doing foster care. It is probably the one thing I miss the most (it is tied with "being a normal person"). Any kid in a situation where they are not being cared for properly, are in any danger, or just unwanted deserves better than that, no matter their age. I agree that it has been abused -- the woman who drove from Detroit to drop off her 13 year old to "teach him a lesson" is wrong. But that kid deserves a better home if that is how his mother feels. I know foster homes don't always have a good reputation, but there are many out there that are wonderful, we aren't all bad (you never hear about the good foster homes, guess they don't make as good of a story). And what about the toddlers that may be in danger? Don't they deserve a safe haven from harm? Any child at any age who needs it deserves a safe haven. Period. Bar none. Even if their parents are doing it for the "wrong" reasons, they still deserve better. It shows the mentality of their parents to do something like that and those kids deserve stability and a chance at a good life just as much as a 3 day old baby. It worries me that we may bar these kids from a better life. Yes, people abuse infants, we all know that. But they are not the only ones in danger, or being abused, or being raised by drug addicts, etcetera etcetera. The majority of kids who go into foster care are not infants, which was great for me, I love older kids and prefer them. I'm worried about the older kids who need a safe haven and every child regardless of their age deserves to have that protection.

Okay, I'll get off of my soapbox now. I just had to say my piece. I can't believe that I am the only one who feels this way and am going to look into a petition or a group that I can lend my meager support to. I want every child to be safe and have a chance. Even if I have to pull out my cane and march to the state capital to say so, I will do it. I already have several older kids in mind that could have used safe haven to make my point. Okay, I'm really done now.

Dear Diary

I really hate when people tell me what my disease is doing when I live in this rotten body and know how it feels -- I didn't get my information from a textbook to tell me how I feel. I listen to my body, I can feel the pain and new problems, I can even recognize that "feeling" I get when I am attack-y. It really irritates me when people tell me that what I am feeling could not possibly be an attack because ______. When my neurologist told me that because I'm on Tysabri I couldn't possibly be having an attack, I told her, in no uncertain terms, that my fellow MSer friends on the web, who are also on Tysabri, are going through attacks of their own. I didn't think her eyebrows could get much higher, but they did. They joined her hair line for a few seconds before she could back peddle and tell me that it is possible to have attacks on Tysabri. I gave her all the information I could about how my body is feeling, I even told her the most pertinent piece of information: I've had to switch from crunchy to smooth peanut butter. But that failed to impress her, not realizing that I am a die hard crunchy peanut butter girl. They drew my blood again (to see if I had developed antibodies to Tysabri), they made me pee in a little cup again, and they checked all my body parts (and some I didn't even know I had) to make sure I didn't have an infection somewhere unbeknownst to me. They have a new director of the MS clinic I go to, so she came in to give me some unwanted and unneeded information. She told me that they couldn't possibly give me Percocet or Vicodin for the pain. I never take that kind of stuff and thought she must be talking to someone behind me; I even turned around to see who she was talking to only to find out she knew nothing about me because I try to take the least amount of medicine and never want addiction-risking drugs. If she had even glanced at my file she would have known that. My neurologist knows that I won't take too many pills or take any thing that might make me more tired or risk getting dependent on. But not the new god of the MS clinic. She sailed in, made me repeat all the things my neurologist just had me do, then sat down to tell me what my MS is and is not. When she went on and on about what I am feeling, I closed my ears. I know what I am feeling. I don't need someone to try and talk me out of it or minimize the pain and new symptoms I'm having -- go back to your textbooks, Cat Box Breath Doctor Of Redundancy, and dig a little deeper. I may not be a doctor but I know my body. It made me miss my old neurologist that moved to Florida a year ago. He respected my knowledge of my own body and knew that we are the experts of our bodies and know what is wrong and what has changed. He never tried to tell me what I am feeling. I wanted to tell her majesty that she didn't need a push up bra because it only made her look like an overloaded ship plowing through the waters and when your cleavage starts half a millimeter below your neck, maybe you should use a little less padding in your brassiere. Or wear a shirt that isn't so low cut the lacy edges of your bra show over it. And you don't need 5 rings on every finger. It doesn't make you look classy or rich, just tacky. She had obviously never heard the "less is more" rule of thumb about cleavage or jewelry. Everybody was awed by her and bowed to her knowledge of MS, I even saw my neurologist nodding along with the things she was saying -- expect the pain meds part, she knows me better than that. I wanted to like her and find that she could give me new information that would help me, but when she tried to tell me what I'm feeling that all went away and I decided I couldn't possibly like her. But I may still give her some mouthwash and a toothbrush for Christmas. I'm nice like that.
Love,
BB

Wipe Out!

*Update: I thought it was BC who said that about having PML, but I must be wrong. Sorry if I offended you my dear BC; my short term memory is not so great even on the best of days. The other day my little sister and I were shopping for dinner and decided on fish fillets. I asked her if we had any tartar sauce and I think she answered me, but I couldn't remember what that answer was. A few seconds later I asked her that question again and she asked me how many times I was going to ask her that. I told her I couldn't remember her answer so she told me again. About 30 seconds later I couldn't remember what she said our tartar status was at home so I sheepishly asked her for a 3rd time what that status was. She lost her patience and told me that she was not going to tell me, I would just have to wait until we got home to figure it out myself. The rest of the shopping trip I was obsessed with whether we needed to grab tartar or not -- I like tartar sauce on my fishies! We got home and I found out that we had 2 bottles of it in the house, to my immense relief. Now whenever I forget something they ask, "Do we have any tartar sauce?!" Ha ha and ha.


I woke up this morning thinking about how wiped out I am and that song popped into my head and has been on repeat since. I wanted to share the joy and hopefully lodge it into your brains. I could have put Tequila instead but whenever I think of that song I can only see Pee Wee Herman dancing on that bar with those platform shoes on. So take your pick of which song you would like to have on your personal soundtrack for today. Having a little girl obsessed with Hannah Montana, it is nice to have something new playing in my head. I tried to resist her music, but when you listen to it as much as we have, it is hard to do so. Some of those songs are so catchy and I am not that much of a snob to deny that they are catchy and unabashedly admit to liking a few, even to Princess, who responded with a "check and mate!" when I told her. The whole "check and mate" thing is our way of saying, "in your face! I was right!" and it feels good to be able to say it. It beats "I told you so!" which I find a little irritating, to say the very least.

I have to go see my neurologist again later today due to the problems I'm having. I would have fought the whole going-to-see-her-again thing, but she called me at home and blackmailed me into it, ie I was napping and she was adamant that I had to come in despite my resistance. No, it can not be handled over the phone, she needs me to COME TO THE CLINIC and run the gauntlet to see how much of a piece of shitakii mushroom I am. And a piece of shitakii I am feeling. My face! My ear! It feels like a hot ice pick is stuck in it and when it wakes me up when my pain meds wear off I think, in my sleepy haze, that I must have a killer ear infection. Then I realize that the pillows shifted, letting my face touch something and my pain meds reached the end of their allotted time to give me some rest. I have found a way to sleep that keeps the right side of my face off of everything: I space the pillows and lay my head in the space so that it is held up by the edges of my head. Viola! I get a few hours of sleep until my pain catches up and I toss and turn in an uncomfortable heap. Besides my raging TN, I also am having problems with my right side. It's twitchy and feels like an electric current is running through it, causing hideous spasms and muscle cramps. I can't remember if it was a blog post or a comment of Braincheese's that I saw where she said she was disappointed that her attack was not PML because she was hoping she would die and I can totally relate to that right now. When I mentioned that to my little sister her eyes welled up and she said she couldn't even think about that because she doesn't know what she would do without me. Flattering, but sometimes being in constant pain makes one yearn for release even though others want me here.

The other day, when I got home (at 4:30 am. My pain meds wore off so I left my fat sleeping soon-to-be-ex-hubby early) my roomies were dying to spring a surprise on me. When they woke up -- many hours later -- they asked if I had noticed anything different around the house. I could see the excitement and pleasure on their faces so I looked really hard to find a difference around this city dump. Before I could answer in the negative their excitement could be contained no longer and they told me they loaded the dishwasher and did 2 loads of laundry! They wanted to show me how much they appreciate all the things I do around here and do a few things to show that appreciation. Between you, me and the dog at my feet, I couldn't see any difference, but I lied to make them feel good. My little sister is a good cook, but why she has to use every dish and pan in the house to make a simple meal is a mystery to me, especially since I do the dishes. So, yes, she loaded the dishwasher but because she had cooked the night before the sink was stacked to the ceiling still. I didn't want to be ungrateful so I waxed poetic for them about the beauty of 2 LOADS OF LAUNDRY DONE and A LOAD OF DISHES WASHED! I must be a great actor because they were very pleased to have pleased me and that is what really matters. They tried and that counts the most. I am grateful to be appreciated and to have them do things to make me happy. It gives me warm fuzzies to know how hard (for them) they tried and how hard it was for them to contain themselves until I got home to see what they had done. So maybe I don't need PML, if only for their sakes. But for my own self, I am not opposed to some blessed release. But don't tell them that.

The 3 F's

Last night I met up with my soon to be ex-husband in a hotel about 15 miles from where I live. Its hunting season (big bucks, big bucks, no whammies!) and he wanted to trade cars so he could have the truck while I drive his P.O.S. Malibu. I hate that car. It has over 300,000 miles on it and hardly a scrap of paint left on it. It's his work car so he drives it all over the country -- well, where ever UPRR takes him -- so the miles have really racked up. The truck is the same year and is barely over 100,000 miles. The only good thing about our cars is that he takes care of every squeaky bolt so they are in great condition no matter how awful they look -- and awful the Malibu does look. He was desperate to sink his meat hooks into me and I was not totally against the idea, it being wwwaaaaayyyyy too long since I have had any kind of lovin's and I'm not really hip on picking up a stranger and risking more diseases. (I need more diseases like I need to gain 10 lbs.) I got the 3 F's and am feeling in a much better mood today.

Fed: I got Runza for my troubles. Eating is a pain but I am sick to death of baby food that needs no chewing. I nibbled on my runza and was happy to be eating something different.

F: Not going to spell that one out. Let me just say it was some sweet lovin's down by the fire and leave it at that. I told him it is a sad thing when after 9 years together we still meet up in random hotel rooms and rattle the pictures off the walls. He thinks it is a great thing.

Filled my wallet: I ain't no cheap ho! Kidding! He gave me money to live and for gas and things I need around the house, but I can pretend. It gives me a cheap thrill to think I could be so daring -- if sleeping with your husband is daring.

We had a good time and it made me think about all the ways we went wrong. Where we could have made different choices and maybe pulled through, even though I am happier where I am and he still has his drinking issues that I'm not willing to live with anymore. I asked him why he had to be a penis wrinkle, pecker head, asshat when he could have been different. He told me I had a dimpled ass and got a good tittie twister for his troubles. Why the man loves my abuse and bad moods is a mystery akin to the Easter Island heads. But it is nice to have someone to let loose on and abuse as I see fit. It helps me keep it out of this house and he enjoys it, so everybody wins.