Guide For The Newly Diagnosed: Pay No Attention To The Man Behind The Curtain

And that man is usually a member of the general public spouting tired cliches mostly found on Facebook posts with cute kittens. You know, the kind of sh*t you see and think, "that is true... Ha ha! My ex slipped on the ice and broke his fat ass! That's the most uplifting post I have ever seen on here!" You are going to hear a criminal amount of stupid crap, useless platitudes and general bad advice. Refer to the good advice in the title of this post. Depending on the source and my mood I have different ways of handling these sages.

The Slow Blink

Some one just told you, "None of us knows what tomorrow brings!" and goes skipping off to take a jog before they make dinner for their family. You are dealing with an attack that has you staggering like a drunk and barely able to stay awake until dinner. Their words are hanging in the air... waiting for a reply... wipe your face of all emotion... now... b...l...i...n...k. It's true, none of us do know, but to say something like that when the odds for your tomorrow are sooooo much better than my tomorrow is really a poor choice of an empty platitude. On the way out of the store grab some cheesy quotes book so you will be better prepared next time, or can at least hit me with something I don't hear as much. I really like Benjamin Franklin or Winston Churchill is good too.

The Lost My Patience

I'm actually a pretty patient person, so when I do lose my patience, you pushed me pretty good. Grocery shopping a bit ago, a woman was using a motorized cart. I could not possibly care any less if someone is using a cart, wheelchair, cane, iditarod dogs, etc. She and her husband came up behind me while I was pondering which spaghetti sauce was truly as delicious as it claimed to be, when he loudly said, "EXCUSE US! She's in a cart!" I no longer cared about spaghetti sauce. I told him, "I don't care if she's in a cart! I have to use them sometimes too because I have Multiple Sclerosis!" I think I may have dropped the F bomb in there too because that kind of attitude really pisses me off. I wasn't blocking the aisle; it was earlier in the morning so it wasn't busy; and why should anyone roll out the red carpet for you because you are in a cart? I had my cane in my shopping cart and no one was walking in front of me loudly informing people of it. "Here she comes! She has a cane! Mush, you little peons! And some one grab her some spaghetti sauce because in all that brouhaha she forgot to grab some! There she goes! She has a cane!" 

The F*ck Stick

This is for when you have really, really pissed me off. You know that old adage "beware a patient man's anger," well I am that patient man. My mom HATES the F word. She hates it to the point that if you use it it has to be in the most extreme situations, and even then... Talking to her on the phone I slammed my finger in the door and took a big chunk off my finger, blood all over, and I said f*ck. My mom was more concerned about my language than my finger. My mother is what inspired this last one, and inspired it is! She really got me livid one day. I haven't been that furious in a long time; I was so angry I told her I wanted to beat her over the head with the word F*CK. I didn't necessarily want to kill her, so I wanted to get a foam stick and carve the word F*CK (I would censor it for the kids' if they saw it) into it to beat her with. For non-human uses I want to get a punching bag to hang in my garage and go out there and beat it with my f*ck stick when I get really mad. I have an old cane with F*CK written on it and there really are not words for the release I get from beating on an old pile of rugs in my basement when I feel the need. 

I know -- or at least I think -- people mean well, but sometimes I wish they would mean well somewhere far away from me. 

Things I'm Tired Of

In order

1. Cluster Headaches

These are the worst thing I have ever experienced. Period. Period again. Bar none, NONE. They make MS look like a fun and lighthearted day in the park. I am so tired of being in the grip of them, of being scared of getting one while in public, of being a prisoner to them. I'm taking a new medicine now that has really helped bring down the severity of the attacks. I still get a few breakthroughs that bring me to my knees, but for the most part it is helping. God am I tired of clusters.

2. My Ex

That man is going to be the death of me. And if that is the case, I better be the death of him too. We get along for a little while, then he pisses me off. I stop talking to him. He leaves me alone for as long as he can stand it, then little by little he starts texting me again until I cool off enough to start responding to him. We talk for a little bit until he pisses me off again, and then I ignore him and we wash, rinse and repeat many, many, many times. He pissed me off early in the summer, we were talking by the time I went on vacation in August. I sent him a "glad you're not here!" post card, and I meant every word of it. Sometime in September he pissed me off and I have not responded to any of his texts since. He has tried every tactic to get me to respond and I have come close, but I'm not ready to put up with his smug jackass self that makes me regret ever talking to him in the first place. Yesterday he was desperate because he was "in full hunting mode and I knew what he needed. All seriousness. No B.S. Just give him what he needs and that's all." What he needed was me to text "big bucks no whammies." That's it. That is his superstition about hunting. If I don't say that to him (or text it, whichever the case may be) he won't get a big buck, he will get a whammy. And it has to be me. I used to say it whenever he was going hunting and he said that it brought him luck, now it's my curse. I told him that I am not talking to him again until hunting season next year, I'm not joking. Big bucks no whammies. 

3. Grocery Shopping/Being Mother Hubbard

I truly do not know which is worse because they both suck. I hate grocery shopping. I get so worn out from it and then don't get much else done the rest of the day. I make menus, I make a list, I buy fruits and vegetables, and try to keep a good selection of foods in my house, but many of those things get eaten fast or need to be eaten fast which then makes me Mother Hubbard again. I don't have a lot of junk food around so my cupboards really are bare. I need to throw away some old cereal boxes but, damn!, that will only make it look worse. I know it's good to not have a lot of junk food, but when you are really tired, a little junk food sounds so nice and quick and easy and... nice... mmmmmm....

4. Being Startled By The Sheriff At Your Door Looking For An Old Neighbor When You Look Ridiculous!

I'm working on some different projects around here so I'm wearing old clothes and a bandanna on on my head. I'm typing away when a sheriff knocks on my door officially startling me and horrifying me that I got caught looking like this! As soon as I hit "Publish" on this I'm heading upstairs to take a hot shower and put on pajamas. Instead of getting caught looking like a dumpy old housewife, I could have at least got caught looking like a clean dumpy old housewife. 

You know what I'm not tired of? Right now I'm enjoying a version of Swan Lake from the 60's. The technicolor! The hairstyles! It's like Swan Lake meets Charlie and the Chocolate Factory. It's so gaudy and bright and fabulously terrible that I can't tear my eyes away. I just wish I had some food to eat... maybe tomorrow I will go grocery shopping if I can't find anything else to do. 

Gonna Pound This Out Even If It Kills Me!

And it just might. With all the laptops gone to technology hell, we have been reduced to using this old behemoth of a desk top. I'm glad we still have a computer, but, dagnabbit!, does it have to be such a monstrous ancient dinosaur? It takes up my whole room and heats it up by about 50 degrees. Good thing I keep my bedroom so cold, so now it is about 70 in here. And don't even get me started about everyone junking up my room with all their crap! Every day I pull out cups and food wrappers, I try to organize all the papers they leave all over, and resist the urge to practice some redrum on their arses. I've been using a laptop keyboard for so long, this old, stiff keyed keyboard seems harder to use than I remember them being. It makes me think of typing on an old typewriter, where you have to really hit the keys for them to work. I only have this decrepit old computer chair that you have to balance your weight on very carefully, or it will dump you out because the back is no longer interested in supporting anything, especially fat hags who bitch about it. Okay, moving on.

We all were sick for about a week there. The joy of the flu makes me question my decision to not get a flu shot this year. I can always come up with a plethora of reasons to not do it, but when good flu bugs attack, I can't remember any of those reasons, besides me being an idiot. Speaking of good reasons, I have been fighting against doing my shot, because I can think of a veritable plethora of reasons to not do my shot. I'm so tired of needles and shots and itchy injection sites, oh my!, that I am starting to think there is something to be said for going Secondary Progressive. When I mentioned this to my family, it went over like a herd of lead balloons and started a fight that will rage until I no longer have to do any shots. I have not been good about doing my shot every day, and even skipped as many as 4 days a few times. It is getting to be that time that I am scheduled to reorder, and I still have a whole box left. I am pondering whether I should tell them that or just keep it to myself. If I keep up this futile resistance, I'm going to amass a ton of Copaxone that I DO NOT want. Due to the fact that I am not the fighter my mom and sister are, I'm going to have to keep half assing doing my shot, because they are keeping a sharp eye on me to make sure I am as lumpy as I should be if I'm doing my shot everyday. In winter, being lumpy is not as bad, but in the summer, it SUCKS! Has anyone else on Copaxone noticed that the lumps get worse in the sun and heat? I go to the beach and become a mass of distorted injection sites that swell and disfigure my body. I'm not interested in attracting anyone, but I certainly am not interested in repelling everyone. Contrary to popular belief, I do have a few standards, they are just well hidden.

Until the day I can retire all needles, I'm going to be a big pin cushion, like one of those tomato pin cushions, which would be a lot cuter than the lumpy body I am. Ah, dare to dream of no longer having to do any shots. . . The sweet, sweet siren call of Secondary Progressive is hard to resist. (For the record, I know going Secondary Progressive is serious, but so is my desire to not have to do any shots anymore. Although the treatments for SPMS are pretty crappy, too. I've done Novantrone and that is an injection that I REALLY do not want to do again. Good ol' MS! It really knows how to suck the joy out of life.) Now I have to go avoid my shot. Toodles.

New Club

I am now starting a new club, the I Hate Princess Club. We are not exclusive, we will take any who want to join -- which will probably be anyone who has met her. We will be meeting at 4am in her bed every morning. Bring all the noise makers you can find, and crumby snacks will be provided in abundance. Our motto is going to be the loudest belch you can muster, so fizzy drinks will be provided too. She runs a heater full blast in her room all night, no matter how hot it gets in there, so wear your summer clothes and be prepared to sweat. Hopefully you do not mind washing your hands with cold water, because wherever Princess is using water, there will never be any warm water left. And I hope you don't mind drip drying after going to the bathroom, because there is nary a scrap of toilet paper to be found in any bathroom she uses. Odds are the sink will be backed up from all her hair balls that she leaves in there, so you may want to bring hand sanitizer just to be on the safe side. Do not bring anything you value, because she does not understand personal possessions and assumes everything is there for her use. And she will not warn you when she uses something up, so be prepared to get a nasty surprise when you go to use whatever it is. Bring a flashlight, because her room is a hodgepodge of clothes and other teenager crap that must be spread across the floor, not put away, and I don't want anyone to impale themselves on her stuff. When using the bathroom, be prepared to have the door flung open on you without so much as a knock to warn you, so don't be doing anything you don't want an audience for. If she should wake up during the course of the meeting, be ready for a steady stream of negative, snarky, rude comments meant to show you how hopelessly uncool and uninformed you are, so be sure you have a thick skin before you join. This is not a club for the faint of heart; you must be a secure person, confident in the fact that you are not as uninformed as 7th graders think you are, or you will be eaten alive. We will be discussing, among other things:

1. How does anyone survive their teenager years without an adult killing them?

2. Should raging, unchecked hormones be illegal?

3. Is it impossible to talk to someone in a normal tone of voice?

4. Should I see if the neighbors would like to use my stuff too? Maybe the public in general would like to use my stuff. Maybe I am being selfish by not sharing my pit juice with the world.

5. Will I ever be as cool and smart as a teenager, or is that just a ridiculous pipe dream?


Any topics that you feel need to be addressed will be added. If you are unsure of what would be a good topic, come spend a few minutes with Princess and your ideas will flow from you faster than you can write them down. Now I will close this announcement with our motto:

BELCH!

See you at 4 tomorrow morning.

Grudges

I don't have too many grudges, not being a person who can hang onto anger for very long. That and I have a thing about excess baggage. Carrying a grudge can get heavy, and I'm too lazy to want to carry anything heavy for very long. But for all my high minded words, I have 2 grudges that I am not quite ready to let go of.

Rebif

That's right, I have a grudge against Rebif because it happened to be in the wrong place at the wrong time. Or was it diabolical enough to put itself there? I'll let you be the judge. Right after I was diagnosed, I didn't want to read anything more about MS because everything I had read about it up to that point was not anything I wanted to hear. I wasn't ready to research any deeper than the most basic information, and even that was too much. After a period of avoidance, I decided to try reading a magazine I had gotten in the mail, figuring it wouldn't be too overwhelming. I took the magazine into the bathtub with me and got trapped in the tub with a magazine that turned out to be one long advertisement for Rebif. I wanted to read about MS and the different treatment options out there for me as I was still trying to decide which medicine to go with, but I obviously got a magazine that was funded exclusively by Rebif. I stalked out of the bathroom, and as soon as my foster daughter and husband saw the look on my face, they grabbed some popcorn, propped their feet up, and sat back to watch the show. I threw the magazine against the wall, was unsatisfied with that so I threw it into the fireplace, and ranted and raved and frothed at the mouth about how it told me nothing about MS, only propaganda about Rebif. That started my deep antipathy for Rebif, and I swore then and there that nothing would ever induce me to take it. And I still hold with that position. I don't care if God Himself comes down and tells me to use it, I will have to decline as politely as possible and pack my bags for hell.

The icing on the cake came in the form of a representative for Rebif. I liked her personally, I just hated what she was representing, and representing she did with gusto. One day, at a MS walk, I was talking to someone who was hoping to go on Rebif. I said how much I hated the interferons -- I had been on Avonex and didn't enjoy the experience -- and wasn't hip on doing them again (I didn't tell him about my grudge against Rebif). We were talking about the side effects, and I said how higher doses of interferons means a higher risk of neutralizing antibodies. He, all pompous and holier-that-thou, pooh poohed my statement with a, "Oh, I don't know about that." The rep came over and we asked her, she admitted that it was true, and I was big enough to not yell, "CHECK and MATE!" in his face. He lost all interest in continuing the conversation, and I lost all interest in having any more conversation with his pompous self.

The only Rebif I will touch is my Rebif pen, because I like the way it writes and the general public doesn't know what it is. They would probably think it was some medicine that stops bladder leakage at the cost of the rest of your organs. The day someone knows what it is and comments on it, is the day I throw it away and use a pen that doesn't write as well, but that is a sacrifice I am willing to make.


That "Brave" Woman

I had met this woman when I first started Tysabri, and she had just started too. I saw her years later, after I had gone off of Tysabri due to the higher risk of getting PML the longer you are on it. She asked me if I was still doing Tysabri, and I told her what I just wrote. She, still doing Tysabri, said, in a voice one would use to talk to a slow child, "I'm not scared of dying," like I was one of the cowering masses who live in fear of death, which I am not, death seems like blessed release to me. She was walking away, head held high like the superior person she is could not possibly be seen talking to a coward like me, when I told her that I am not afraid of dying, I'm afraid of living through PML and what it could do to me. She actually slowed her walking away, and got a frown on her face as she processed that answer. She lost all interest in ever talking to me again and still doesn't have too much to say to me whenever I see her. Maybe because I didn't have the proper awe for her and her blithe disregard for death? Maybe because I had a point and have blithe disregard for death, too? Who knows? And I have no intentions of having further conversations with her, not enjoying being talked down to. It actually gets my hackles up and doesn't cow me the way I feel like they are intending it to.


Even though I don't like holding grudges, these are 2 that I have no intentions of letting go, they having offended me to the marrow of my bones. It is rare for me to be that deeply offended, so I'm going to enjoy these grudges to the end of my days. Some baggage is worth carting around.

I've Got Kennel Cough

That's right. I've been lying with dogs, 3 in my bed each night and the middle sized one holding down my feet, cutting off the circulation as I type. I would rather have fleas right now. I could give myself a flea bath and feel better, instead of pondering calling the vet and having myself euthanized. I feel so rotten that Sugarbowl and Princess are irritated with me because I'm being too nice, not my usual crabby self. You would think they wouldn't look the sick gift horse in the mouth, but they have pried its mouth open and are nit picking every tooth. All I want is a little kindness, someone to listen to me bitch and moan about how awful I feel, but all they can do is bitch and moan about how I'm being too considerate and nice to them, and they don't like it. It isn't me and they think there may have been an alien invasion and want me to see if I have had an anal probe. Beings as I am only feeling rotten from the lungs up, I'm confident in saying I have not had an anal probe and there are no crop circles in the massive clothes pile in my room. I wouldn't care if the aliens did come take me away right now. Nothing they could do would make me feel any worse.

I stepped in dog poop this morning. The littlest dog pooped by the back door. I didn't see it and squashed it flat and dragged it all over the place. Good thing I can't smell anything. I'm sure it reeks, but I can't be positive. I'm just guessing from experience. I've never known poop to smell good, and I'm sure everyone else will be able to smell it when they drag their lazy butts downstairs. Do I care? Not one whit. Let them inhale the sweet sweet aroma of dog feces while I sit back and smell nothing. I can't taste anything either, which really sucks. I'm not one of those lucky people who lose weight when sick. If my stomach is not upset -- and I have a cast iron stomach that rarely gets upset -- I cannot stop eating. You would have to board up the kitchen to keep me out, and even then I would chew my way through the barrier just to get at food I can't even taste. I've been eating the spiciest foods I can find, trying to bust open my sinuses. I like spicy food anyway, but have been adding blackening spice to everything. Even the dogs won't touch my leftovers right now.

Today I'm going to lounge in pajama pants on the couch, boo hoo about how awful I feel, and eat everything I can with as much spice as I can pile on it. No one else will be home, so those scurvy dogs that gave me kennel cough will have to listen to me. I hope this makes some sense. I'm feeling feverish and out of it, and the day is still young. It's going to be a very long day.

Announcements

I have a few announcements to make, then it is back to all those fun things you were doing before I interrupted you. I'm such a killjoy.

*I think I'm having an attack. The pieces are coming together, like some rotten puzzle I would rather throw out than put together. Or like unraveling a big cable knit MS sweater that someone keeps on knitting, and knitting, and knitting, and KNITTING! (Sorry, just watched Pee Wee's Big Adventure.) It would explain why I was so slumpy for so long. I get this feeling when I'm getting attack-y. Like a mild bout of depression mixed with an amazing amount of fatigue. I let it simmer on the couch until new or worsening of old symptoms develop. I have been so wiped out, with no corresponding activity to explain it, that I am having a hard time staying awake, and that is not me. I'm falling asleep by 6:30 pm, after taking a 2 hour nap in the afternoon, then going to bed and sleeping until 4 am. I should feel well rested. But I don't. I only feel like I need a nap. My legs feel thick and hard to control, and the worst of all, I'm having itchy spots that feel like I'm wearing wool on a hot summer day. They crawl and tingle and feel really gross. Adding this all up, I decided I was going to have to take one for the team and call my neurologist.

*I should have waited until today to call her, instead of yesterday. It was my lucky day! They had a cancellation and I could haul my happy arse downtown to see her! I had already hauled my happy arse in to see my pain doctor for my hug, and he gave me a muscle relaxer that is not as sedating, and turned out to be manna from heaven, so I had Sugarbowl drive me, being deep in the throes of manna from heaven. I talked to my neurologist's nurse, and here is the problem: I cannot tell any story that involves her without adding the important fact that she has the most thick, luxurious mustache ever seen on a woman. Sugarbowl asked me if she was married, but I have never been able to tear my eyes away from her glorious mustache to look at her hands, so I don't know. But who wouldn't want to marry such a woman?! I guess a man who can't grow a great mustache and would feel inferior to her, that's who. Anyhoo, I told her that I knew my neuro would want me to pee in a cup and give another vial of blood, even though I have never had anything wrong with me whenever I am having MS problems, but I suppose it gives her pleasure to tell me that I still have MS. And I was right, she did want more of my pee and blood.

*Going to give more of my bodily fluids, I walk up to the desk and tell the receptionist that I was there to pee in a cup and have blood taken. She told me that I needed to get back in the elevator, go down this long hall, get into another elevator and take it to the third floor to the lab. Being in pain and cranky, I didn't bother to read the sign on the wall that said "Adult Intensive Care." She thought it was great and said that she doesn't get to see people that are so responsive very often, so it was a nice change of pace. She talked for so long, I about gave my urine sample to her floor. Sugarbowl enjoyed it so much, she was still laughing about it by the time we got to the lab, which was down a long hall and up another elevator.

*Nothing new about my neuro. Same ol' same ol'. She pooh poohed me as always, and even though Sugarbowl said I was bitchy, I thought I was being nicer to her than usual. I let slide the whole, "last MRI didn't show any lesions," without going the rounds about the inaccuracy of spinal MRIs. Sugarbowl says that if I am so unhappy with my neuro, I should find a new one. I agree with that, and some days I swear I am going to do it, but I do enjoy my anger with my current neuro and would hate to give up that pleasure. Besides, I feel like if I don't call her on these things, she may never learn and keep subjecting other unsuspecting saps to her old school ideas about MS. I want to ask her if she has to do continuing education and suggest some reading materials for her if so, and some reading materials if not.

*The last and most important announcement is that in the doctor's office, waiting for the nurse to come back with my MRI appointment -- did I mention that she has the most thick, luxurious mustache ever seen on a woman? -- I announced to Sugarbowl that I was craving KFC because I needed to swim in a bucket of coleslaw. She being the best chauffeur and sister EVER, got KFC on the way home, so I got to swim in my bucket of coleslaw before falling asleep on the couch by 6:30. I'm still picking cabbage out of my hair. I am a happy gimp.

The Paradoxes Of MS

Right now I can think of 2 major paradoxes of MS. I'm sure there are more, but these are the 2 that are torturing me at the moment.

1. I'm always tired but I can never get any sleep. Sure, I sleep for about 5-6 hours a night, and sometimes I can squeeze in an hour nap, but more often I can't get any decent sleep. I probably wouldn't even get those 5-6 sub par hours of sleep at night if my night meds didn't knock me out. Even in the haze of my night drugs, I still get up 2-3 times to pee each night. I have cut down all liquids after 6 pm, but my bladder still wants me to get up to drain those 3 drops that it has produced in the 2 hours since my last bathroom visit. I wake up throughout the night and check the time to see how much sleep I've gotten since the last time I checked the clock. It's never as much as I had hoped to see. And lately, I have been getting up in the 3's instead of the 4's as I used to in the days of yore. I try and stay in bed until 4, but it is a struggle. One morning I spent 25 minutes messing with the dogs before I had to raise the white flag and get out of bed. In those 25 minutes I got the dogs so wound up by plucking hairs off their fluffy buns and trying to stick them up their noses, that it was get out of bed or risk being covered in stinky dog spit. I chose to get up with only 75% of my body covered in stinky dog spit. I didn't want the dogs to start plucking hairs off my fluffy buns and try to stick them up my nose. I can dish it out but I can't take it.

2. My MS Hug squeezes me so tight that the only way to get any relief is to wear something tighter. Across my back and chest, right where a bra strap goes, is a line of pain and tightness that is only made bearable by squeezing the sh*t out of it. I have been wearing my tightest cast iron sports bra to help ease the pain. It is so supportive that I could use a jackhammer all day and not get the slightest jiggle out of my unmentionables. Even now, I have an Ace bandage wrapped so tightly around my chest that I can't draw a deep breath, but if I don't wear it, I can't draw a deep breath from the pain and tightness from the hug. I have Sugarbowl and Princess beat on my back and rub it as hard as they can. The pure ecstasy from that makes me moan and groan like I'm in the deepest throes of passion -- not exactly something I want to do with my sister and niece. They are good sports about it and take turns so one can rest her arm while the other beats the crap out of me. Sometimes abuse feels sooooo good! Sugarbowl is the best when it comes to any MS related help I need. She has the arm support thing down just right. She understands that I need a strong arm that I grab, not grabbing my arm like my mom does. My mom grabs a hold of my arm and runs off, dragging me behind. Sugarbowl lets me take her arm and lets me set the pace. You would think that a woman who works in a nursing home would know better than to drag a gimp along, but she hasn't figured that out yet. Sugarbowl also has the beating of my back down to a science. She knows to work it across the line of pain with a combination of hard rubs and deep pounding of her fists. I was in so much pain the other day, but she had to go to work, and I wished I could afford to pay her to stay home and work me over like she was tenderizing meat. Alas, I could not afford to have her stay home so I wore a corset of Ace bandages all day, waiting for her to get back home and abuse me some more.

Like I said, these are the only 2 paradoxes that come to mind right now, only because they are the 2 that won't let me forget they exist. If you have others, please let me know. I'm always interested in others' sufferings, even though I feel like I'm running a huge risk by asking. I'm afraid that my body will decide that it needs to add those problems to my already impressive repertoire of pain and agony.

P.S. I am trying to put together another edition of Dear Blindbeard, so please send me any questions or comments you would like to have me respond to. Or any you would not like me to respond to; it's all the same to me.

Y. Bother

I'm going to change my name to that. After my SSA hearing, I think it is rather fitting. I would have written about it sooner, but the whole thing left me in a deep blue funk that I am still trying to claw my way out of. The next time I EVER have to go to any kind of SSA bowlsheet, I'm going to yell everything I have to say into the toilet and flush it all down, because it will have the same effect (is that the right effect/affect? I'm not sure, but I am sure that I don't really care right now.). After all the crap I had to say, all the questions I answered for her royal highness, all the "experts" throwing it their 2 cents -- regardless of whether it is true or not -- at the end of it all, the judge asked the vocational expert what a person who can stand and walk for 6 hours could do for a job. Why did I bother to talk at all?! I should have just asked them to tell me what my problems are, if any. And could they please tell me what my limitations are, again, if any. Dearest Judge, could you please tell me how it feels to live in this body? Please explain my fatigue to me, my pain, and ignore my gimping walk. I am breathlessly awaiting your answer, because living with it is nothing to what you have to say about it all. I left the courtroom feeling like I was wearing a neck brace and someone knocked a book off a table, and I whipped my head around to check it out, like in a TV show.

Did you know that the day after you get turned down for Disability (SSDI), you can file for SSI? If you no longer have the work credits for Disability, as I do not because this whole farce has taken so long, you can apply for SSI, which is for the poor saps like myself that no longer can apply for their full disability because they haven't worked X amount of years out of the last so many. Nobody told me this! I just found out about it earlier this year, when I reapplied and the whole mess got rolled into one huge mess. So if you get turned down, reapply IMMEDIATELY before the whole appeals process starts, so they don't get mushed together. The trick is to make sure they are separate. I am now impatiently awaiting my unfavorable decision so I can apply for SSI before filing my appeals, because I AM going to file an appeal because I hate them all and am not going to just shrivel up into a little ball of manure and go away. I am looking forward to what they come up with as a job I can still do. Marathon runner? Acrobat? Contortionist? Please make it better than a grocery bagger. A little creativity would be deeply appreciated.

Ugh! Other than all that fun, not much else has been going on. Well, nothing worth writing about anyway. Except maybe how now that it is getting colder and we are keeping the windows closed, the dogs seem to be gassier. Or a great story of how Sugarbowl sharted at work the other day and we have been singing the diarrhea song to her, but she can laugh at herself so she agrees with the whole "pants full of foam" part. Or even how the medium sized dog jumped on me in the yard yesterday and ripped a huge hole in my pants, showing off my unshaven legs to anyone who happened to be looking. Yeah, like I said, nothing interesting. Now I must go and get ready for my job as a marathon runner. Smell ya later.

A Rant Unrelated To Anything

I just had my most darling little dog fixed yesterday. When I had adopted him from the Humane Society he weighed 3 pounds and they told me that he would be lucky to hit 10 pounds. He weighed in at 12 pounds. As a devoted adopter of only unwanted animals, I find the Humane Society very irritating. I also find all those animal rescue groups annoying for the exact same reason: their assumption that no one knows how to treat animals correctly except themselves. They make you lie to adopt an animal. Too often they charge an outrageous amount for an animal that risks extinction if someone doesn't come along and want it. So many animals are put down -- too many -- that you would think they would make it a little easier to adopt. And those animal rescue groups? Forget about it! They want way way way too much money, often want you to sign a contract outlining the homemade meals you will feed the animal, and want to do home visits. I have successfully raised several pets, one to 16 and am currently providing a loving and safe home for an almost 10 year old dog with horrible seizures and a disposition that is getting more bitchy as the day progresses. I don't make their meals, but they are not exactly starving, especially as I usually share what's on my plate too. I do not work in an animal testing lab, or put my animals through rigorous SATs or the like. I have found that their paws do not have the dexterity to hold a pencil well enough to shade in the correct circles so they invariably fail. And I know they are smarter than that. Well, kinda. My dogs sleep in bed with me and the littlest one is tucked in my robe right now. I don't hit my pets, except a swat on the butt for the biggest dog when he tries to hump my male cat. (That cat has only a stub of a tail due to the cruelty of some kids breaking it and the last thing he needs is a big dog trying to make babies with him.) I'm glad the Humane Society is there and they provide an excellent service to those animals who need it, but do they have to be such pompous ass hats? Do they have to treat me like I have no idea how animals should be treated? Like I only want to grab the dog, race to my car and start abusing it? And those animal rescues that insist on a home visit? Really? Are you going to interview my dogs and cats and make sure I am worthy? I'm not much of a liar in general, but the Humane Society makes me lie. I don't bother with the animal rescue groups because the money they want for their animals could buy me a new car. And a luxury vacation. And even a new set of luggage for that vacation. I also object to a home visit. It's ridiculous and insulting. I may be wrong, but I'm pretty sure there is a huge population out there that do treat animals well and they don't all work at the Humane Society or run an animal rescue. I want an animal to love and rule me and my house, but I'm not willing to be finger printed or have a criminal check done on me to adopt your pet. So, yes, I will lie like the cheap rug I am and take this most darling little dog. Now you can go back to being pompous and self righteous, Humane Society.

The Worst Companion EVER!

To say something is the worst companion ever is saying a lot. Shopping with Princess is never fun. She is only interested in pointing out everything ugly she comes across. I notice the ugly stuff but I am able to move on to things that may be of interest. Not her. She has to constantly show me everything horrible she finds. It's not exactly a good way to find things that are not horrible for me to spend my $2 on. Even more annoying is going to the library with her. She goes, finds the book or two that she wants then comes and finds me to look over my shoulder at my list of books that I want and runs ahead of me to grab them for me. As a hardcore historical nonfiction geek, I usually look at the books in the same general area as the books I have on my list, so I don't appreciate someone grabbing just that one when I want to look at all the ones near it. She just wants to hurry me up; she is not trying to help me, just speed things up. She likes to keep up a constant stream of talk about how the books I read are so boring, why do I look at the ones near the one I have on my list, couldn't I just grab a few and race out of there, how much she wants to beat me over the head with a huge reference book and drag me out by my hair, etc. etc. She's a great companion when it's something she is interested in, which is only a very few things outside of the house, but nothing else.

Having just passed the 3 week mark of unending joy with my knee, I have had plenty of time to ponder how pain is the worst companion EVER! I know it is, but when you haven't had a recent bout of acute pain, you can forget just how unfun it is. Lying in bed, keeping my throbbing knee company because it couldn't sleep anymore, I was thinking about the different kinds of pain that like to keep me company from time to time. (It is so thoughtful, it never wants me to be alone.) While my knee is a deep burning throb, my trigeminal neuralgia is a stabbing screaming pain. My legs burn and ache at night, and the muscle spasms that my MS Hug give me are like a hot knife being drawn down my body. Around my left eye I have a dull ache that I usually try not to take any pain meds for because I take so many for everything else, but sometimes I have to raise the white flag. I get tingling electric shocks up my right side that feel so gross they make my hair stand on end where they go up into my scalp. Luckily I don't get that one as often.

Chronic pain can drain all and any fun out of life. My good humor packed a bag for Reno and left me without even a Dear John letter. I'm trying to be patient with everyone around me, but patience is very hard to find right now. Sometimes I can't think around the pain and just have to hold on until the pain meds catch up -- I try not to play catch up, but sometimes it comes up so fast I get to play that most not fun game. My little world has shrunk even smaller with all this fun, and I don't care because until this pain starts to abate, my bed and couch are where you will find me. Not that anyone wants to find me right now, and I can't blame them. I don't want to find me either.

Happy Anniversary To Me!

You know how in a new relationship you celebrate every milestone no matter how trivial? How you think about them all the time? No matter what is going on, they can pop into your head and drive every other thought out. Ah, the beauty of new relationships! Today is my 2 week anniversary with my hurt knee. Yes, it has been 2 glorious weeks of nonstop togetherness. My knee has been on my mind constantly, to the exclusion of every other thought. I think about it all day and without Lord Lortab I would fantasize about it all night.

I twisted my stupid knee getting into the tub. Nothing major at the time, but as the day went on it kept getting worse. The next morning I could not even put a toe down. I don't know how I made it to the back door to let the dogs out or got my coffee going, but those are 2 huge priorities in the morning so I hopped around and got it done. I figured I just sprained it, so I spent the next couple of days holding down the couch, giving myself freezer burn on that knee, and in a lewd position trying to keep that knee elevated. The only part of the RICE (Rest Ice Compression Elevate) treatment I was unable to do was compression. I can't stand even a blanket on it when it really starts to sing, so that was out. I finally raised the white flag and went to the doctor a week ago this last Friday. My guts were protesting so much OTC pain meds so I was also hoping to get a little higher end med in addition to finding out what in the hot heck hades hell was going on with my knee. My knee was already hurting but when that doctor, who I had no problem with up to this point, started messing with it I about came up off the exam table. Acorn says the only thing that was touching the table were my elbows. From that moment on, I have hated him and never want to look at his ugly (he wasn't really ugly) mug again, and have been pondering starting a smear campaign against him. He, not having to deal with the pain, told me to keep with the OTC meds, even though the recommended dose was not helping and I had been going over it -- he just told me not to do that -- because he is a diabolical servant of Satan. I was living on Sprite and crackers, in a tremendous amount of pain, busy cutting out words from magazines to glue together as a hate letter to send to that doctor, when I lost all my good humor and went to the E.R., after talking to his nurse and finding out he was out for the day, no doubt checking in with his lord and master Satan. They at the E.R. sympathized with me, after seeing my white knuckled grip on the chair, and gave me a prescription for Lortab. They are not on my hate letter mailing list, which is good, my magazines being cut to shreds and not wanting to go to the store to get more. I am seeing an orthopedic surgeon on Weds because the MRI showed fluid in my knee and God only knows what all, I don't speak Evil Bloody Hemorrhoid so I'm not sure what all the doctor spewed out.

Today I am going to spend time thinking of my not beloved, and pondering 2 weeks of togetherness. I really hate new relationships. I'm going to the store to buy more magazines now; my knee just got on my mailing list.

Oh, Me Aching Head!

I woke up with such a headache, I wouldn't be surprised if my head split open like a rotten melon and an alien popped out. I had one of the worst nights I ever weathered, so it is little wonder my head feels so throbbingly rotten melon-like. I had those stupid irritating dreams, you know, the kind that are so frustrating they make you mad in your sleep. Where you wake up ready to round up a posse and go hang the bastards that pissed you off, even though they claim they had nothing to do with it. (Like when I would dream that my ex husband was sleeping with someone else I would be mad at him all the next day.) I don't think I ever hit the R.E.M. stage of sleep because my bladder woke me up every 2 hours. I've been having bladder urgency for the last few days. It doesn't matter when I'm swimming at the lake (be careful of warm spots when swimming with me) but it's annoying when out of my giant toilet. And don't act like you've never peed in the swimming hole, or even the pool. I used to get out of the water, but then realized that none of the kids around me ever felt the urge to get out of the pool no matter how long they had been swimming, so they might as well swim in my pee as I swim in theirs.

I used to pee about once a night. My little sister said that she and her fiance would wait until I got up to pee, about an hour after going to bed when that glass of water I drank with my night meds finally hit my bladder, then they would get it on. I am so glad I sleep like the dead because that is something I never want to hear. When we were younger, Sugarbowl had a boyfriend spend the night and even though she had her radio playing in her room, I still heard what sounded like a pig caught in a bear trap. She loves when I tell that story so much that she is now very careful to make sure the house is asleep before bringing out the bear trap.

On top of having to pee every time I am comfortable and want to read, I have been having double vision in my left eye if I look even slightly off from straight ahead. The double vision, while annoying, is accompanied with a lovely deep pain around my left eye. I've been taking so much ibuprofen I can feel my kidneys raising the white flag in defeat.

I suppose I should call my neurologist, but I don't feel like it just yet. She will want me to come in and do a bunch of tests, if not an MRI, and I don't wanna do all that right now. I want to get a few things done around here, in between all my peeing, then I will call her. Funny how when I was newly diagnosed, I would have called right away. Now I'm content to wait a bit and call when it's convenient for me. I think it will be convenient once the alien in my head hatches.

That's Right! I Said it!

I don't mean to be rude, but sometimes when others are being rude, the censor button on my mouth breaks down. I am so notorious for it that when my little sister had a similar situation happen recently, she called me right after it happened to let me know because she said it made her think of me. I hear, "You didn't really say that?!" so often it surprises me, because don't they know me by now? When have I ever not said it?

At my fattest -- 55lbs more than I am now -- my little sister and I went to Taco Bell for lunch. As soon as we park, a whippersnapper pulls in and parks so close to me that I have to squeeze myself out of my car door. I called out to him, "Damn, honey, I ain't as skinny as I used to be!" while trying to exit my car without denting his or my car. My little sister was laughing so hard that he turned red and decided he really didn't want Taco Bell after all and got back into his car and drove off.

When I had my first attack of optic neuritis I couldn't see or read anything unless it was inches from my face. I was shopping at Walmart and noticed the store manager mysteriously turned up everywhere that I was. I get done shopping and head to self checkout because I'm anal and like to organize my stuff by what goes where at my house. I don't even get a chance to scan one thing before a lady comes up and starts grabbing all my stuff to ring it up. I tell her I can do it myself and she says, "Oh, I don't mind!" I asked her if she was doing it because the store manager was following me all over the store and they wanted to make sure I paid for everything. She just claimed to be "one of the nice ones." But she sure made herself scarce after I said that. I'm a lot of things, but I'm not a thief, and following me is just giving the thieves more privacy to rip you off.

Another time shopping at Walmart -- maybe I need to start shopping elsewhere -- and a guy starts grabbing up my crap to ring it up for me. I asked him if he was bored. He said no. Then he grabbed a food item before all my non food items were rang up, which is unacceptable, so I stopped him and told him I don't ring up food items before all my non food items are rang up. He acted like I had deeply insulted him (I hope I did!) and sulked off to ring up somebody else.

Renewing my license plates, the lady behind the counter is being a total bitch about everything. It's not like I had a million questions or wanted to quibble over the cost, but she was ruder than hell! I get my new tags and as I'm leaving I tell her, "Thanks for your help and thanks for being such a bitch about it!" I noticed that the people working around her were smiling and she had a shocked, open mouthed stare, like she could not believe somebody would dast say such a thing to her. Sadly for her, I dast.

My little sister had to kill some time before work recently, so she went into an antique store to check out their wares. The lady behind the counter followed her all over the store. At one point my little sister turned around from the shelf she was looking at and bumped into her! So Sugarbowl asked her if she owned the store. The lady said she just worked there. Sugarbowl asked her a few more questions and said, "I just figured we should get to know each other better since we are shopping together." She also told the lady that she had no intentions of stealing anything so she could go back to whatever she was doing before Sugarbowl came into the store. She said another shopper started laughing and the lady huffed off. She was so proud of herself for actually saying something to someone, that she called me as soon as it happened because she "pulled a Blindbeard."

I'm not advocating rudeness, but almost tripping over the worker in the store because they are that close to you? They need to be called on it. I would have said something.

Just Not Feeling It

And what is that "it," you ask? Well, let me shed some light on "it". I am just not feeling a blog post that is one subject of any interest to anyone, even myself. All I have is a bunch of little nothings that have nothing to do with anything, of interest or otherwise. I am going to post those nothings so maybe, just maybe, I can clear up the air and move on to something interesting. (No need to point out that I rarely have anything interesting to say, but thanks anyway, Alfred Vaginastein.)

*At the library yesterday, I was reminded of how many people do not know to BE QUIET there. I have always made the kids that accompany me be quiet, but too many adults didn't get that memo. There was a woman loudly talking about people who have abortions. I'm not going to give my opinion on the whole abortion issue, but I am going to say that no matter what my opinion is, I wouldn't yell it out in the library, a place where most of us are taught to be quiet out of respect for others trying to read. I am also going to say that others' opinions are not likely to be changed by you yelling about it in a place where others would appreciate you shutting your dirty pie hole.

*Why do people feel the need to consummate their love at the lake? Do they not have a bed at home? Or even a back seat in their car? Heck, they can use my back seat if they are that friggin' horny that they cannot wait until they get out of public. It's gross and ridiculous. Maybe it is a rite of passage that I never felt the need to do? I must have missed that memo. I don't feel like I have missed out on anything by not humping someone in a lake while there are people -- and KIDS -- all around me. How romantical can it to be to bump uglies while keeping an eye out for dead fish? I'm so tired of seeing people humping that I no longer give them a wide berth. I will swim near them if they are in an area that I usually like to swim in. I have found that it is a great way to make them move along and ruin the obviously overwhelmingly romantical mood that attacked them against their will.

*This morning, while having my smoke and watching the dogs pinch off some loaves, I was trying to keep the mosquitoes from draining me dry when I had a thought. If smoking while pregnant can cause health problems in the baby, would my blood make the mosquito babies have similar problems? Are there a bunch of mosquitoes out there that were hatched with low birth weight or other developmental problems? And if so, wouldn't that be a boon for the creatures that mosquitoes like to feast on? I'm not sure if this subject has been studied, but it would be interesting to know.

Now you can see why I haven't been blogging too much recently. None of those topics are something I can really expand upon and are not things I think anyone wants me to expand upon. The moral of this story is to shut the mother truckers up when at the library, keep it in your swimsuit bottoms at the lake, and if smoking will negatively affect mosquito babies, then smoking does have some positives to it. I know, I know, I'm a regular Alfred Vaginastein myself.

So Much Negativity

Ya know, I really wanted to write a blog post about some of the funnier things that have been going on around here. Like when we went to the local lakes here and Sugarbowl found everything disgusting on the beach and in the water. Or maybe I should say it found her. First she put her shoes next to 2 dead rotting fish, then she was attacked by a slimy clump of algae, and finally she stepped on a fish spine that some fish rudely left behind when it died and rotted on the beach. She and Acorn wanted to go to that particular beach because Acorn has big boobs and doesn't like to show them off, and Sugarbowl has a big butt and gut and doesn't want to show it off, so we had to go to a beach that no one else was at. They are ready to have others see their big body parts next time because that beach was obviously empty for a reason. I would have liked to write about that, but there is so much negativity floating around everyone right now that it has my undivided attention, and maybe if I vent it I can move on. Maybe.

Everyone in my family is hurt and angry at everyone else. It is such a mess that we would need a mediator to come in and help us all out because everyone is sure that they are right and everyone else is wrong. Mostly it is centered around my older sister and a situation that nobody can agree on. Sugarbowl has some hurt feelings towards me, but she and I are so used to fighting that we can be mad at each other and still function, mainly because we are BFFs and love each other no matter what happens. But my older sister... I'm no longer sure she loves any of us. Here is the Cliff Notes version of the whole thing.

The house that we were renting -- we finally moved -- was my older sister's house. We moved because they were having financial problems and decided to let the house go into foreclosure. The house payment was $1200 a month and we paid $1000, but they were having a hard time paying that extra $200. My mom helped us with the rent each month, so "my" part of the rent -- my mom paid mine and an extra $250 to help us out -- was $625 and Sugarbowl paid $375. The house payments had fallen behind by $5500 and my older sister had sold a piece of her land and could bring the house current but Sugarbowl and I had decided to go our separate ways by then, so she kept the money instead. When Sugarbowl heard that they decided to keep the money and let the house go, she thought that meant that we would not have to pay rent on a house that my older sister was letting go back to the bank. She thought dead wrong. My older sister still wanted us to pay rent. Sugarbowl was furious and moved out before she had to pay another month's rent to "line their pockets." My older sister said that I could take the appliances when I moved, so I was not as bothered about still paying rent on a house that they were not making any payments on, even though I thought she could have cut me a little slack and not exacted my full $625 each month. She thought she was cutting me slack by only having me pay my part and not the full $1000. Never mind that the money was coming from her disabled sister's account and her 68 year old mother. She needed that rent money. She has a lifestyle to maintain! (Sorry, a little anger seeped out there.) When Acorn moved in with me, she told my mom that the rent should really be $1000 again.

When Sugarbowl moved out, she left all the dirty cat boxes and the cat crap all over the basement floor. I had put my cat down months ago and was tired of cleaning up after her cats. I knew she was moving and she had planned on taking the cat boxes with her, so I didn't clean them. She went downstairs, took one look at the dirty, overflowing cat boxes, and decided that she would just buy new cat boxes. It angered me so much that I left all that mess because all the stuff in the basement was hers and I wanted it to soak up as much of that cat crap smell as possible. My older sister is mad that the basement was that bad and is feeling "used" because "her" house was so dirty and "trashed." They had left a Foosball table behind and they claim that a cat climbed up on the Foosball table, somehow squatted on those moving poles, and peed on it. I can understand how a cat with a UTI would do something like that, but the only cat that had been in that house with a UTI was one of hers that she had to put down after it had peed all over the house. She kept talking about how a cat had peed on and wrecked "a $400 Foosball table" like we should pay to replace it when they had left it down there for a year and a half. If it was so damn important, why did they leave it for so long? And I think the $7000 they made off of us for rent for a house that has been foreclosed on would cover that expense. She doesn't see it that way and is mad at us.

Remember those appliances that she said I could have? Well, apparently I misunderstood her saying that I could have them for meaning that I could have them. I only took the stove because the one here is so old. She decided that they needed that stove so we had to move it back. My mother and 69 year old stepfather moved that stove back so she could sell it and maybe make a little more money. Now here is where it gets really fun! The land that she sold a part of to help pay off some of their mounting debts, my mom bought for her. She didn't intend to buy it for her, but she helped them get the loan to buy it, then they couldn't make the payments so my mom paid the whole $70,000 for them! They made $45,000 off of the piece that they sold and didn't give my mom one dime of it because she looks at the land as "her inheritance." Never mind the fact that my mom may need that money some day if she should ever -- God forbid! -- need to go into a nursing home and it ate up any money she has and nobody would have an "inheritance," she got hers! Never mind the fact that this duplex I moved into is my mom's and a nicer stove would help the value. She could sell that stove and make, what? $100-$150? That and all the other little "loans" my mom has given her over the years would bring her "inheritance" to about $150,000, by my conservative estimate. I was digging around on the internet looking for information about Borderline Personality Disorder, which my little sister has, to see if there was a way she and I could communicate better about the things that are bothering her about me, when I stumbled on Narcissistic Personality Disorder. I finally found what my older sister has. She has ZERO empathy for anyone else. She is exploitative to other people, especially her family, and she is preoccupied with having the "perfect" life. She has to have the best of the best and their lifestyle is going to put them into bankruptcy. She has an arrogant, haughty way of dealing with people and wants to be admired and envied.

I don't want a big fight in the family, so I am going to keep my distance until we all are a little less angry about all this. I am going to try, but whenever I think about this whole situation it makes me so mad I want to go toe to toe with her and have it out. I don't think it would change anything, her being Narcissistic, she would never see anyone's side but her own in all this. But sometimes I really want to say some things that she would never forget!

Dear Blindbeard: The Agree To Disagree Edition

Sometimes you just gotta agree to disagree. These are a few of those times. But it doesn't mean I love you any less or that you are any less adorable, because every one knows that you are adorable!


Dear Blindbeard,

Frankly, I disagree with your perspective on the parking lot encounter. I just think that guy was, in his way, looking out for us all. So many people cheat and illegally use those parking placards. [I know, because my brother took mine for awhile before I caught him and took it back.] There aren't many handicapped parking police, so we have to keep an eye out for each other. Can you really say you were so offended by his simple query?

BTW, back in the day when my disability was invisible, someone actually spit on my windshield when I was in the store. Another time I was yelled at from across a parking lot. It's hard to explain under those circumstances, but I just take the bad along with the good, and appreciate having the privilege of close parking.

Webster


Dear Beautiful Webster,

I really can say I was VERY offended by his simple query because it all boils down to one thing for me: IT IS NO ONE'S BUSINESS WHAT MAY OR MAY NOT BE WRONG WITH ME! In fact, if he too "is like me" and has good days and bad days, shouldn't he of all people understand that even though to him I seem "so able" that maybe, just maybe, I have a similar problem to his? We have all seen people park in handicapped and thought that they sure didn't look like they needed it, but since being diagnosed, I now assume that they must have something wrong that is not apparent to me but must affect them in some way. I don't presume to judge their disability level and do not appreciate any one judging mine.

I realize that I sound very angry here, but I am not angry with you, my dear. I get angry every time I think of that man and want to hunt his pompous ass down and stuff my medical records up his wazoo. My sister was so angry with him because she said that he has no idea of what we all have been through since I have been diagnosed, ie my suicide attempt, my extremely low opinion of myself, my propensity to want to harm myself when I get too down, etc etc, and he has no business judging me.

I'm sorry that you have had people react that way to you, and you must be a much better person than I am because I would have yelled some very colorful words back at those people and started a rumble in that parking lot. It is just not any one's business and I do not appreciate people making it their business.

Love,
Blindbeard


Dear Blindbeard,


I am somewhat confused. Really.

Visiting a MS-related website I always expect to find something related.

But this isn't a case. But that's probably OK.

By the way, I, being a MS-er, am concentrating on natural MS cures.

I cured my MS in 1997 and have no exacerbations from since.

All best

Czes Kulvis


Dear Beautiful Czes Kulvis,

I can't be all MS all the time. It depresses me and bores me too much. Besides, I may have MS but that is only one part of my life and of me. If I had to talk all MS all the time I would crochet myself a noose with "Goodbye crewel world!" crocheted into it and hang myself. And as I can't crochet a thing, I choose to not talk MS all the time.

There are so many great MS websites out there that are all MS and I visit them to keep abreast of what's going on in the world of MS, but I have a feeling that is not what you really wanted to comment about. Call it a hunch, but I have a feeling you really wanted to talk about your "cure" for MS. While I am deeply interested -- yawn -- in your cure, I am going to stick with my own regime of dealing with my MS until science proves a better way of dealing with it. And if that way does indeed prove to be your way, I will become a most devoted minion to you. Until that time, I hope you remain exacerbation free for another 13 years.

Love,
Blindbeard

All Are Guilty

I have not been blogging because so much is going on in my house and all of it is ugly. But because, as one person said to me, a blog is a place to be honest and expose your heart and soul, I am going to give an as honest and impartial run down as I can of all the crap that is floating in a big black cloud over my house.

My little sister and I have been having a lot of problems since about right after Christmas. If you have never dealt with someone with Borderline Personality Disorder, you are VERY lucky. It is a constant challenge. You need a thick skin and the capacity to forgive after they go into a rage and say the most horrible and (potentially) damaging things to you. I am slow to anger and quick to forgive, which is probably why she and I have remained friends throughout our lives and why I am not worried about us being friends again someday. No matter what she says to me, I NEVER allow myself to go certain places, even if she does. They will take anything you say, give it a different meaning than what you intended and get mad about it. Even after I say that that was not how I meant that phrase, she will still argue the whole thing based on how she perceived it, not on what I really was saying. I am no Job, so sometimes I do get tired of it and lose my patience with her. People have their limits and she can really push me past mine.

She has not been taking her meds for quite awhile because she has never been good about remembering to take pills and she thinks she has been doing really good without them. I think she needs to take her meds no matter how "good" she thinks she is doing without them. There is no room to breathe around her without them. Everything you say can and will be held against you and given different meanings than what you actually said. Honestly, I have not been taking the high road and have been dealing with her in the same way she deals with us. I remember what my ex husband said after they had their first huge blow out fight, he said that he had been biting his tongue long enough and is tired of it. Those words keep going around and around in my head like a broken record. She will tell you that he is an ass hole and that is why they got into that fight, but the truth is a little different than that. It was shortly after I was diagnosed and she and I were planning a trip to go see my dad in AZ. I started having an attack and was going to have to go do the steroids again. She was upset that my attack was putting off our trip and came over to my house to ask me when I would be better, when we could go on our trip, would I be ready next week? Would I feel better in the very near future? Was I going to be able to watch her kids while she was working? Were we ever going to be able to take that trip? I didn't have any fight in me; I was still reeling from my diagnosis and not exactly thrilled that I was having another attack just a few months after my last one. My ex said that I just sat there and took her anger, which I did. He lost his patience -- he cannot tolerate anyone saying or doing anything negative to me -- and told her to back the f*ck off and leave me alone. The whole thing escalated into a MASSIVE fight and the rest of that story is not pretty and not worth telling.

I tried to keep the peace around here but got tired of it and started giving it back the same way she was giving it to us. It all started over a sandwich. I had made grilled cheese sandwiches and tomato soup for dinner. Princess had a friend over and they were all playing games. I was tired of frozen foods and wanted to make something a little healthier for everyone, so I let them play their games and made dinner. Sugarbowl didn't like the bread I used for the sandwiches and kept making fun of the bread, saying how dry the crust was and so on. It irritated me because I was trying to make them something a little better than what I make when I am too tired to make a decent meal. So I took what was left of her sandwich off her plate and threw it to the dogs. She went into orbit and went off into a tirade that was embarrassing to Princess and I because Princess had a friend over. When I took her friend home, I told her that I was sorry that she had to see that, but sadly, that was not as bad as it usually is. Princess said, "that was actually really good for her. She usually is worse." And I couldn't disagree.

I try and protect Princess from her anger as much as I can. When she goes off on her, I try to get her to turn it onto me. Sometimes she fills me with so much hate I start thinking some extremely negative things about her and wish things that I don't really want to come true once my anger cools.

This post has gotten too long, but I needed to set the stage of how she is before I can tell the saga of our latest problems. I will post Part II later. Until next time, thank your lucky stars or whatever you thank, that you do not have to deal with some one who is Borderline.

Pity, Party Of One, Your Table Is Ready

Yesterday I held a pity party for myself, against my own will. I tried to fight it but it wouldn't go away. Coming off of Tysabri and doing the oral steroids, I was hurting, irritable, edgy and unable to get any sleep. I did the steroids for 3 days and decided that the side effects are not worth it. My mouth tasted like I was sucking on an old penny that had been soaked in Robitussin and no matter how many times I brushed my teeth or ate mints, it wouldn't go away. I called my neurologist and told her this, my history of suicidal inclinations was in my favor, I am not going to finish my 5 days of steroids and the plan of having me do steroids for the next 6 months until Copaxone reaches its therapeutic levels has been scrapped. While trying to find a way to get my body comfortable, I spent too much time on Facebook and read all about every one's hot plans for the weekend, which sent my pity party into full swing.

For games I decided against Monopoly and went for Pin The Self Loathing On The Gimp. I fell into the old Why Can't I Be Normal trap and went round and round with that. I didn't want to admit it, but I was jealous of those who can go and do things, especially at night when I am counting down the minutes until I can go to bed. I want to jog again, walk my dog, read half the night, be able to keep up with Princess, shop all day with Sugarbowl. I want to be normal and feel like a 35 year old woman, not a 95 year old woman. I want to join in all the reindeer games and be able to stay up too late and rock it with a lampshade on my head. I do not want to be ME anymore. I hate the fact that MS has all the say over me and if I try to fight it I only hurt myself worse. If I try to push myself too far, I get too tired and my muscles start shaking, that overwhelming fatigue where if you don't rest you run a HUGE risk of hurting yourself.

Ugh! I have to stop this pity party NOW because I am only irritating myself more. Every once in awhile I have to vent this stuff and be with it so it can pass and I can get back to life. I hate feeling this way and I HATE feeling sorry for myself. It makes me even more of a bitchy jackass then usual, and nobody wants that. Luckily, my roomies were not interested in coming to my party and decided to tease and harass me to keep me from taking myself too seriously, so I do feel a little better and even started to laugh at the way they were walking like me and stumbling over everything while forgetting what they was doing 5 minutes ago. When holding a pity party, it is best to invite those who will not join in on the pity. I still wish I could party all night with a lampshade on my head, but at least I can admit that my dancing would look like the tin man in a rain storm and that image amuses me and makes me feel a little better.

So Dude-ing Dumb

Sorry for not getting back here for so long -- I'm sure you all had the hounds out looking for me -- but I have just fought off the last vestiges of a hideous, dark, ugly depression. My older sister is getting ready to have surgery tomorrow and I have been helping her get ready to be laid up for a while. She's having a hysterectomy and has that pre-surgery "must get everything done NOW" going on. My mom is coming down to spend the next 2 weeks with her to help out. I live just down the street and can't wait for my mommy to be here and spend 2 weeks with us. I would end that sentence with about 50 exclamation marks but then I would be writing like Princess, who has now embarked on the most irritating "Dude" stage. She uses Dude for everything and everyone. To the dogs, "Dudes!!!!! You're on my homework!!!!!!!" To me, "Dude, I told you last time I don't eat that and, Dude, you just made it for dinner AGAIN!!!!!!!!!" Talking on the phone, "I know, Dude!!!!! He always does that!!!! Dude, do you think he is just a stupid dude who can't figure anything out, Dude?!!?!?!!!?!??!" It's really wearing on my nerves. I started using Dude like the Smurfs use the word Smurf, as an adjective, verb and noun. "Dude, that is so dude-ly dude-ish! I was just dude-ing this really dude book about something dude-ly close to that dude-est subject!" That didn't phase her, so I had to step it up a notch and have been calling her "Penis Wrinkle" every time she calls me Dude. I suggested that she use that instead of Dude all the time but she didn't think that would be such a good idea at school, plus she thinks Penis Wrinkle is gross. I would rather be called Penis Wrinkle right now than have to hear "DUDE!!!!!!!!" one more time.

Speaking of penis wrinkles and all things male anatomy, I have been pondering why so much stuff centers around the female anatomy, and have started a one woman crusade to change that to all things all male anatomy all the time. If you would like to join in this crusade, I will give you a few statements to help you get started, Penis Wrinkles, and hopefully we can make a dude-ing difference.

"Who used up the last penis-ing roll of toilet paper and didn't replace it?"

"Get your fat prostrate off this couch and get something done today or I may hurt you!"

"Why the testicle didn't I get this bill before it was late?"