Sunday, November 30, 2008

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.


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.

Saturday, November 22, 2008

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.

Wednesday, November 19, 2008

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.

Monday, November 17, 2008

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.

Friday, November 14, 2008

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.

Thursday, November 13, 2008

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.

Wednesday, November 12, 2008

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.

Tuesday, November 11, 2008

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.

Monday, November 10, 2008

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.

Sunday, November 9, 2008

Old Hat

In news that will shock no one, the SSA has denied my request for a review and upheld the judge's decision. *Yawn* It is so unshocking I was expecting it. The only good news is that it can sometimes take up to 2 years to get a denial, so I didn't expect to hear so soon, even though I knew what the answer was. I'm glad they turned me down so quickly so that I can move (on up?) to the next stage: a civil suit. Even though there were material errors the judge made, they still came up with some cockamamie reason why they were going to uphold it. A reason devoid of any logic or reason, but it only adds to my determination to fight it. What else do I have to do besides shake an impotent fist at the SSA and make lewd gestures at them? Not much. All this reminds me of a friend of my ex's whose father had terminal cancer and was trying to get SSI. The man was in a wheelchair, on oxygen, home bound, and had a nurse to care for him full time, yet he fought the SSA for 3 years about whether he was disabled or not. When he got his first denial he wheeled his happy butt down to the SSA and told them that he can't even wipe his own ass, yet he was supposed to be able to do _____?! I can't remember what it was they said he could do. He died before he could win SSI, which I'm sure the SSA breathed a huge sigh of relief that one had died before they had to pull out the dusty, cobweb covered, rarely used "FAVORABLE" rubber stamp. I think they have a posse of trained monkeys to stamp "DENIED" on every application that comes in, monkeys that they buy bananas for with the money they are not giving to the disabled so they can have some semblance of a life -- the disabled, not the monkeys. Maybe I could get a job as a trained monkey. As long as I get a long nap break and can pull out the "FAVORABLE" stamp, I'm game.

If you are thinking you may need SSI any time within the next bazillion years, start saving your pennies now and get on the ball. It is a long drawn out process that has taken me almost 4 years so far and I see no end in the near future. I really want to file a suit against the SSA, against the judge, against the while process. They do not see MS as a disabling disease regardless of the evidence in front of their ugly, brain damaged, stunted reasoning processes, infuriating faces. I hate the whole lot of them, even though I hide it really well. I have a whole army of doctors who have submitted an encyclopedia of evidence to show that I did not find a crackpot doctor who was willing to say whatever it takes to get me disability so I can sit on my butt and do nothing all day. My little sister's ex's sister (still with me? Her ex sister-in-law.) never worked, never wanted to have to work, wanted to sit around and not brush her teeth -- seriously, her teeth are (what are left of them anyway) are rotten butter slabs -- and get paid to do so. She found a doctor in her town willing to say that she had a mental disorder. I don't find terminal laziness to be disabling, but what do I know? First they tried the bi-polar angle but when that didn't pan out and she got denied they changed it to schizophrenia. I've known several schizophrenics in my life and she is not schizophrenic. She finally got disability after 3 years for a diagnosis that changed more than Princess changes her unmentionables. I've had 2 respected neurologists submit their opinions that I can't work, a damning file from a psychiatric hospital, an ugly summary of my mental issues from a psychiatric nurse, the findings of my therapist who has been in the business of shrinking for over 25 years, and even a report from one of the SSA agents themselves, yet none of that meant a thing.

I don't want to start to rail against those who get disability when I may not be able to discern why, because I also know there are people who would think that about me. But I don't give a hoot what others' think. If I thought I could get a job and support myself, I would do it. But I know that I have a legitimate claim and I am not about to drop the case. I have to stop before I disintegrate into negative words and impotent threats that could get me into trouble.

Saturday, November 8, 2008

Loose Ends

A few quick things I want to say then I am off to hunt up some cheap crap that I don't need at stores that know I am there to spend my pennies and welcome me with open arms, ie Hobby Lobby. That place sucks the money right out of my pockets, even if I just drive by I swear I lose a few dollars.

*Please comment away. I love all and any comments so don't ever feel the need to not comment because you think you comment too much. Your comments amuse me so much I would really miss hearing anything you have to say. I yukked it up over Diane's comment about only finding lesbians at hardware stores and that I need to look in the frozen food aisle for boyfriends and think when the time is right I may have to invest in some eau du meatloaf to try out her theory. In fact, I enjoy most of the comments so much I share them with my family and lay in bed at night still laughing at some of the things you guys (Midwesterner, we say "guys" for everything) come up with. So please do not hesitate to bury me under comments. One of the highlights of my day is to check my email and see what you have to say. Hmmm, meant that as a compliment but with a life full of low lights not sure how flattering that was, but you get my point.

*I have been meaning to thank you all for the awards that you have bestowed on me. I even have several drafts thanking everyone for the awards and appreciation that you gave me. The best part about it is that I started this website to say my piece (and get out?) and I never dilute myself on here, so it surprises me that people would enjoy that. I am totally myself (for better or for worse) so I am very pleased that people like me ("you like me! you really like me!"). I honestly thought I would get more negativity for my point of view, so to be appreciated and even enjoyed was a very pleasant surprise. I am glad that others, who may not always agree with me, enjoy what I have to say. In a strange way it is like an acceptance of who I am and that has done me a world of good.

*I am in total agony with my stupid TN. I upped my dose of Neurotin, which has been a god-send and I praise the gods of Neurotin throughout the day. When I talked to my neurologist, she said that I could go up to 3 times the dose I was taking. But I am slowly working my way up as I need it. I am loving the sleepy release that it gives me and even wake up at night when it wears off, so I keep a glass of water and some pills on my nightstand. It has made me cross and irritable but I am trying to not punish others because of my pain. Although Princess has taken to calling me "Mr. Krabbs" when I am short-tempered and cross. And because I am often too cross to write, my blogs may slow down a bit until I get this under control. I am having a whole host of problems and if I didn't know better (??) I would think I am having a relapse, which brings me to my next loose end.

*My neurologist said that a break through attack is rare on Tysabri; but if there is a 70% reduction in relapses wouldn't that leave 30% of the attacks? I think I have said that before, but I can't remember if anyone had any answers. It only makes sense to me. 70% is not 100%, so therefore I should expect an attack from time to time, right? It has been over 1.5 years of attack-free bliss, so it only makes sense to me that I should have an attack from time to time. When I called about pain management, the nurse said that my neuro wanted to see me in the clinic. I let loose a hearty, "DAMN!" then apologized. The nurse, nonplussed, said she hears a lot worse and got a good laugh out of my reluctance to see my neuro so soon again. Do the IV steroids help TN? I don't know but I am willing to do them if they will help, and the only way I would ever consent to doing them again is in extreme circumstances. And this is an extreme circumstance. My little sister is against my using steroids again because the last time I went crazy and she is worried about how I will take it now that my life is worse. She said I will have to have someone with me the whole time and even for sometime after, until I am past a certain time period. She says I lost the luxury of being alone if doing steroids and need an around-the-clock babysitter if I do them. She reminded me of the horrors of the loony bin to make me think this through, but I am willing to do anything if it will give me some relief.

I think that about sums it up. I'm riding the Neurotin pain-free high and want to terrorize the natives before it wears off.

Friday, November 7, 2008

If You Want My Body

And you think I'm sexy,
C'mon, Baby, help me outta these pants.
I walk funny. I don't know what other word to use for it. I tend to lean to the left side, the stronger side, and throw out my hips to keep upright. The way I walk has sent me to physical therapy 3 times too many and I've only gone 3 times. But I hated it each time. Well, that's not entirely true. The last time when I went for the bursitis from the way I walk, which messed up my hips, they did this massage thing to my saddlebags that felt good and made me almost forget that they were massaging the worst part of my body. Nothing like having someone hitch up your shorts to expose the fattest part of your body, then proceed to rub and massage it to make one feel that maybe they need to go to the gym. To combat this problem, I have found that if I wear tight pants it keeps my hips in line and makes me walk right. My little sister says I look like the picture above in my pants. Or like a jumbo soft serve ice cream in a kiddie cone. Or a muffin who is about to burst out of it's muffin paper. She can really wax creative when seeing me in my pants. I usually try to wear a long shirt or a sweatshirt to cover my overhang, but the other day when we were bowling on the Wii, my shirt kept coming up and showing off the tightness of my pants and the distress of my soft serve ice cream about to burst out of it's cone. I think they were jealous because I bowled a 182 and they were barely over a 100; they even laughed at the way I did my bowling form and kicked out my leg -- years of bowling league are really paying off for me right now. I have some loose pants that I will wear sometimes, but by the end of the day my hips are killing me and the ghost of physical therapy past haunts my dreams all night, making me return to my too tight pants the next day. I know it looks ridiculous and like someone who won't admit they need a bigger size, but I am okay with all that. The relief from hip pain makes my venturing out in plier pants worth it. Who cares that I need a small army to get back out of them? Not me! For something that isn't a major problem (except to those who have it) bursitis is very painful and a major fun killer. As much as I love to have my saddlebags be the focus of attention, I'd rather keep that bulge to myself. And if I look like a jumbo soft serve in a kiddie cone, I'm comfortable with that. If my muffin papers are straining to hold in my bulk, I don't care. As long as I keep bursitis at bay I will look like Patrick in Spongebob's pants and happily whistle Rod Stewart the whole day. The insults don't bother me, but the pain from my gimpy walk does.

Wednesday, November 5, 2008

Defining Moments

There are moments in life where it all comes together and you realize this is what I'm here for. Lately, while keeping my TN and couch company, I have been reflecting on some of those fabulous moments and not one to keep anything to myself, I have to share them. These are a few moments where I almost burst with pride and joy that my life has meaning even at times when I can't see it.

The other day at dinner (we always eat at the table as a family even if it is just Princess and I, my being old school like that) Princess was telling a story from school about a girl in her class who is somewhat of a bully. Princess was talking to someone else in her class and this girl told her to stop acting popular because she's not. We all laughed at the story and Princess told her she was just jealous because she's not popular either. Princess went on to say that she doesn't care what anyone thinks and I almost died and went to heaven/hell (not sure where I am heading) right there. Later this same girl pushed her into her locker and Princess pushed her back. At her old school Princess was having some trouble with a boy who was bullying her. I got tired of the teacher never seeing it and her coming home with bruises and marks on her so I told her to fight back. She was worried about getting into trouble but I told her that if I was called into the school because my little girl fought back against a big fat bully boy I would go in with a grin like the Cheshire cat and ask what my little girl did to this much bigger boy and why exactly did they have a problem with it?! Once she started returning his pushes he decided that this little girl has some fire in her and maybe he shouldn't mess with her. What made me push out my chest and walk a little taller was when she took him on for bullying others. He was picking on a boy in her class that always came to school in dirty torn up clothes and smelling bad. I told Princess to be nice to him even though he wasn't always the nicest, or ignore him even, but don't add to his misery because a child that goes to school that way is having some major problems at home. So the bully was picking on him and pushing him around and she got into the fray and pushed the bully back and told him to pick on someone his own size if he could find someone as fat as him. I would be hard pressed to find a moment that has made me more proud than I was of her for that.

My maternal relatives live in Michigan, 20 miles from Jackson in a tiny village packed with nothing to do. It has been a goal of mine for several years to go to Jackson while playing Johnny Cash's Jackson as loudly as possible. Why that was a goal of mine, I can't say. It was just on my list of things to do before I die. I am a HUGE Johnny Cash fan and I have wanted to go to Jackson while singing about going to Jackson for some time. So 2 years ago I had both my sisters and their kids with me when we decided we needed to go to Jackson because the fire has definitely gone out where my grandma lives -- actually I don't think there ever was a fire there, but why split hairs? My older sister has a totally tubular sound system that can be cranked up without distortion so we rolled into Jackson with our windows down and our system up and enjoyed the shocked/disgusted/horrified stares of the locals. Not only did I get to go to Jackson while singing off key about going to Jackson, but I had the people I care about most with me --minus my mom, she was gabbing with her family. It was the icing on the cake to be able to share that moment with them.

My dog is a gay homosexual. There is no way around that. I don't care what his sexual preference is, but I do care when he doesn't stick to his own species. At my old house we had a cat that had been through hell when he adopted me. Some kids had gotten ahold of him, tied a rope around his tail and did things to him that broke his tail and eventually made the greater part of his tail fall off because he was so scared of people I couldn't get the rope off in time to save the rest of his tail. Naturally we named him Stubby. Stubbs was a lover when he knew and trusted you but would hide from people he didn't know. I protected that cat from any harsh words, he being sensitive to loud noises or any kind of angry voice. But I couldn't always protect him from my horny dog. Both of them were fixed so I thought (wrongly) that it wouldn't be an issue. My dog is a yellow lab so he is much bigger than a cat, but he went after that poor cat with a zeal that made me see red -- the only time I ever broke my rule of never hitting my animals. He would be so busy trying to mount and hump Stubbs that I could come up behind him and give him a swift kick in the rear or give his tail a good yank. He knows when I pull his tail that he in in BIG trouble and as much as he hates it, he knows better than to try and bite or fight me about it, as much as he wants to. Stubbs had to be left at my old house, being an outdoor cat who only came in once in awhile I didn't want him to freak out by being moved and have something bad happen to him, plus my ex-husband likes him and wanted to keep him. I thought the sodomy would stop. Me and my rose colored glasses! He decided that Midget would make a good lover and has transferred his lovings to him. Luckily Midget is not one to surrender his virgin behind willingly and fights back. I was thrilled that my dog finally was interested in his own species but it only got better. The other day my older sister's female dog was over playing with our dogs and my dog, for the first time ever, tried to make puppies with a female of his own species! I was so proud! If the nosy neighbors decided to see what the hullabaloo was all about, at least my dog had the decency to do it with the correct animal to continue their species, not 2 males fighting bitterly, one oversexed and the other trying to fight him off like a Catholic school girl. There is no mistaking what he is doing when he pins down Midget and starts pumping away. And there is no mistaking Midget's very obvious displeasure, or my great embarrassment when I see the neighbors looking on in confusion and trying to herd their kids back inside before they figure it our too. I don't care if my dog is gay, I just wish he'd keep it private and not display it for the whole neighborhood. The only bright side is that he is not interested in humans at all, so I don't have to try and stop him from humping people. My older sister has a dog that is a lesbian and is always trying to climb on female visitors so she has to warn females who come over about the dog. I think that is worse than my dogs having a lover's quarrel in the back yard.

Saturday, November 1, 2008

Its Hard To Be So Delicious

I wouldn't know, not being delicious in any way. My little sister won't touch hot dogs after I told her what my ex-hubby said about them. He worked in a meat processing plant for 10 years before starting on UPRR and said that if I knew what hot dogs were made of I wouldn't eat them. The joke is on him. I do know what they are made of and I do find them delicious anyway. We had pigs in a blanket the other day and I made the mistake of repeating what my ex said about hot dogs: that they are only anuses and eyelids. My little sister gave the rest of her pigs to the dogs while I enjoyed my eyelids and anuses. Some people are so silly.
Halloween was totally forgettable this year. We have a house full of great candy and my Trigeminal Neuralgia decided that I don't need candy, or food that requires any kind of chewing at all for that matter. I thought my TN was in the past. Sure, I still get jaw pain when I'm tired, usually at night or when I get too run down, but it has come back and I'm wondering why it likes the cooler months to torture me. The right side of my face is killing me and my teeth are singing that old song. The back of the right side of my jaw feels like the day after a dentist visit when you have to get a shot back there and it is really sore the next day. To add to my torture, everyone is enjoying candy and solid food that requires chewing right in front of me -- medieval torture chambers have nothing on my roomies. I can't stand anything touching that side of my face and kept waking up throughout the night whenever I would roll onto my right side, making my left side stiff and my chest feel flattened. (Note to self: contact neuro and see if anything would help the pain; ie better pain meds, shock treatments, frontal lobotomy...)
My little sister has to go to court for the 3 month review to see about child support for Princess. They lowered it 3 months ago (even though he is a veteran and gets over $1000 a month for being a stupid drunk and not working) to $90 while he was in his latest treatment center. Now before you applaud him for going to treatment, let me clear one thing up: he doesn't go to treatment unless something has happened and he is threatened with jail time, like a car accident or another DUI. Then when the danger has passed he goes back to being a drunken !&@*. My father-in-law is the same way, except he would never go to treatment, only stop drinking without a word about why until we heard later that he hit several parked cars and drug one for over a block with several witnesses and in full daylight -- he being a day drunk. A day drunk is the worst. People expect a drunk late at night, not when they are coming home from work or picking up their kids from school, and when I said to my ex that he was going to kill someone someday then how would he feel? My ex said that his father doesn't care and has no remorse for his actions. A fine specimen of humanity at its best. The last time he stopped drinking for over 6 months we found out later that he had hit a truck at a fishing hole while backing up with his fishing boat in tow, lost his license, was dropped by his insurance and looking at possible jail time. Once the danger of jail time didn't materialize he started hitting the bottle again and driving even though he has no license. So when my little sister said she wanted to go shopping for something decent to wear to her court date -- she has to look her best for her ex's to make them sorry (??) -- I was less than thrilled to go along and help her pick out an outfit to wow the drunken pants off her ex and told her I couldn't possibly find any motivation to get off the couch, put down the peanut butter and go with her. I realize you don't want your exes to be glad they aren't with you, but to try and make them regret letting you go when they aren't worth keeping themselves?! That I cannot relate to. My ex is lucky if I throw on a clean sweatshirt and socks without holes in them. I crawl into town to do whatever it is that makes me have to see him with a crappy "laundry day" bra and unflattering clothes. Never any makeup or any semblance of control with my unruly hair. I don't care how he feels about my leaving and if my appearance scares him off, which it hasn't done yet *sigh*, I still can't care.
So what was the point of all this rambling? I don't know. I had to share the picture of Midget Poo Poo Platter exhausted by the weight of his delicious, fluffy buns and I had to share the boring details of my life right now -- I'm nice like that. Hope your Halloween was less forgettable then mine and I am off to do Tysabri today, on what would have been my 7 year wedding anniversary. For the record, I agree with Lisa Emrich's (I think it was Lisa who said it) comment about not needing to worry about boyfriends right now, my divorce being so recent. I only wear makeup when I go oot and aboot with my little sister because she worries about me if I am too antisocial for too long. She thinks I need to get out there again and I think when the time is right it will happen, it doesn't need to be forced. But to appease her I tame my hair and put on my eyes and play the social gimp, so she won't worry about me. The downside to having made a "suicide attempt" is that everyone worries too much when you are down and they want to make you "all better." So to keep them happy and not worried, I pretend to care about the opposite sex when with my little sister, which she will report to the rest of my family about and lessen their worry. Anything I can do to put their minds at ease I will do... except most of the things they want me to do. But I can pretend.