Tecfidera; Notes From The Lobster Pot

Multiple Sclerosis sucks, but these MS disease modifying drugs are the bane of my existence. I started Tecfidera in April after trying and failing the 3 times a week Copaxone. I swear I am more old injection site lumps and dips than woman. It makes those shots such a hoot I wasn't sure how much more fun I could handle in my life and found myself "forgetting", skipping, and finally downright unwilling to do it to myself anymore. (Also I think the 3x a week Copaxone stings more.) As much as I would love to -- metaphorically speaking -- skip off into the sunset DMD free forever, I realize that is not a wise choice, especially after 10 years of being diagnosed, and increasing lesion burden in my spinal cord and in between the two hemispheres of my brain, causing cognitive problems. I had to choose between irreparable brain damage and, ugh, a DMD, there was no third door with a donkey and a cart behind it to choose instead.

As I said above, I started Tecfidera in April. My neurologist went over all the things I needed to know to get me started like, in her words, possible "brutal" nausea, and the flushing side effect. She told me taking it with rice was supposed to really help with nausea, which happens to be one of my favorite foods. My sister made me rice puddings for a few weeks because the fact that there was a kitchen in my house that actually had food in it made me want to throw up and die. I had read online that a big ol' greasy cheeseburger was actually best for the nausea but not ideal for anybody's diet especially as you take the med twice a day. Honestly, it was all just a matter of degrees. I would start feeling human again, think that maybe I could go and nibble on something, and that thought wasn't horrifically revolting, then see the time and it all made sense. I only had a few more hours until I had to take my next poison pill. I would stuff myself to the gills, take my pill, and hunker down, preparing for that nausea to hit, to make my whole body, down to my DNA, want to turn itself inside out to dump out any food that ever touched my insides. I've never been pregnant, but my sister had terrible morning sickness with both her pregnancies, and she and I were discussing nausea and it sounds like they are pretty comparable.

You know what got me through Tecfidera's mind numbingly, at many times completely debilitating nausea? Marijuana. I have done search after search to see how many people have used marijuana to get them through it and I have not found many who have said they did/are. I realize not everyone can do this, and I'm truly sorry for them because you don't have to suffer. You also don't have to pull out the six foot purple bong with Jimi Hendrix on it and start taking huge hits like you're a kid again. All things in moderation. When I start feeling the beginnings of the horror starting, I take a puff, sometimes two off a small pipe. When you take something for medicinal purposes like this, you really don't get "high" like you do if ripping off Jimi's purple haze. I can tell that I smoked, but I can still function. I go outside with my dogs and water my plants, etc. My head may be fuzzy around the edges but it's not in the toilet, and I can live with that. I knew I didn't want to sit around smoking pot forever, this was just temporary. I was keeping my eyes on the prize.

Tecfidera has cleared up my mental fog. I feel like I can think clearly again. There was NO WAY I was going to let the temporary nausea win -- it usually only lasts about six weeks. (Also I am not doing injections again, at least for awhile, a long while.) I don't want this mental clarity to go away. I feel like it would be a Flowers For Algernon situation. This is why I made the choice to smoke marijuana to get me through the nausea, and even smoking, my mind was more clear than it has been in a long time. Of course my neurologist was thrilled when I told her I was smoking to deal with the nausea.

Neuro: How have you been doing with the nausea?
Blindbeard: It's horrible. I started smoking pot because nothing helps.
Neuro almost falls off stool. Blindbeard watches passively, making no move to help. Neuro rights herself and Blindbeard is secretly disappointed she didn't hit the ground. Conversation continues as if these two women like each other.
N: You should really try to stick to the rice. That seems to be doing the trick.
BB: I've tried everything. Nothing works.
N: Well, the rice is what they recommend.
BB: I'm going to stick with my six foot purple bong. You want to take a hit and go get cheeseburgers?

The next major side effect of Tecfidera is the flushing. Oddly, my neurologist was much more interested in driving home the point that the flushing is really uncomfortable but temporary. Maybe some people get scared when their body starts feeling like they have the worst sunburn of their lives spreading its nefarious burning heat over your ears and cheeks, down your chest and back. Those 15-20 minutes sure do seem a lot longer when your arms are on fire and you have all your frozen vegetable tied to your face, ears, chest, and shoulders with those resistance bands you knew you were keeping around for some reason. When that flushing comes on, that's when I start feeling like a lobster in a boiling pot. When I was searching for others' experiences with the flushing, I came across one review where they said Tecfidera improved their hemorrhoids. Mental clarity and improved hemorrhoids, what can't Tecfidera do?!

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. 

Guide For The Newly Diagnosed: The Answer

This is an idea that I have been mulling over for awhile now. Next month will be my 9 year anniversary (cue the circus music) of being diagnosed and I have learned an obscene amount about MS since then. A truly tantalizing ton from tomes, and a lewdly large lump of life lessons. Think of how many little nuggets that we have learned the all too often (very) hard way, and think of how many things we would have liked someone to tell us when we were newly diagnosed. So, because where I am at in my disease course is a total snoregasm (from Bob's Burgers, I wish I'd made that word up!), I'm going to share some things that I have learned during this long strange trip. 

THE ANSWER

My diagnosis came out of the blue. I fell down some icy steps, left leg went numb, double vision in left eye, go see doctor, usual tests, and within a matter of 2-3 days was told I had MS. My life was like a puzzle that I was orderly putting together, the way I wanted, the way I had planned. MS took that puzzle and threw all the pieces in the air, it even mixed a few other puzzles in with my original puzzle for extra wackiness. I was so shocked, lost, scattered, scared, confused, overwhelmed, every word that you can think of like that, I was, as I'm sure most of us are in the beginning. I went to the MS walks and support groups, I talked to as many people with MS as possible trying to find out how they were okay with having MS and I was a mess. I wanted to know their secret. I wanted to know why they cared more about what casseroles people had brought than the fact that they had MS and they are only going to become more disabled (I hesitated writing that. I don't want to scare anyone; after 9 years I just started using a cane full time.). I wanted to know the answer. And here it is. The answer is Time. That's it. On those days when everything is just too much, wipe everything off of your to do list and put on it "breathe in and out." That is what you are going to do, providing you don't have to take care of others. Sometimes I would just sit, stare out the window and breathe in and out, that was my task for the day because I was too overwhelmed to take on anything more. 

In time you will start to care more about what casseroles were brought as you come to terms with having MS. At first I used to wear my MS shirts all the time so people knew what was wrong with me, now I never wear them. Why give away the answer when it's so much more fun to let them wonder? I even tell them when they ask that the answer is not as interesting as what they are imagining, because it's not. And, something I truly never thought would happen, I have even been able to put together a few parts of those puzzles that MS scattered. It has not been easy, sweet Mother of God it has not been easy, and The Answer is not an overnight cure, so it needs to be taken with 2 heaping tablespoonfuls of patience and I have been out of that since birth. While I'm waiting I'm going to go see what casseroles everyone brought.  I hope one is that jello one with the pretzels and whip cream, I freaking LOVE that stuff!

Birthdays, Anniversaries, and Architechture

Today is my little dog's birthday. A day of great joy and celebrating in my house. A celebration of 3 years of love, joy, and happiness! (Because it is his birthday, we are going to ignore some of his more irritating habits, like not waking me up at night when something is knocking on his back door. Love those morning surprises.) He has an under bite that makes his bottom lip stick out and I swear he dangles it in front of me hoping I will trip on it and cover him with kisses, all while pretending to want to get away from my loving embrace. I think he is just trying to save face in front of the other dog, that is why he runs away from the kiss storm as soon as he can wriggle away from me, but he has a head that is as soft as a velvet painting of Jesus and I cannot resist trying to cover it with layers of kissies. The other day I came home to find that my dogs had ransacked my potatoes. There were 4 of them scattered around the house. One in the living room, one in the kitchen and two in my bed. I threw away two of them and let them keep the other two because they were enjoying them so much (and had eaten half of them). They kept bringing them into bed with us and I kept pitching them back out. We kept up this charade until I gave up, as they knew I would, and I went to sleep with 2 dogs, 2 potatoes, one rope toy, 2 books, my 2 remotes, and me all sardine-canned in to a full sized bed. I should be embarrassed by how much I spoil my dogs, and I am a little, but I love those little sh*ts so much and I have never been a good disciplinarian. I set his birthday on the 5th on purpose, because I wanted something positive the day after something negative, which is the anniversary of my being diagnosed with MS.

Eight years ago yesterday I got the news that I got the MS from sitting on an infected toilet seat, probably at a store somewhere. I really should use those paper seat covers, but I didn't think I would ever contract anything. How naive I was, putting my bare arse all over toilet seats wherever I went, never for one moment stopping to think of the possible consequences! Nah, I just had to give the public what they want, a reason to treat me as a person with a communicable disease. The thing about having MS for this long is getting over having MS at all, whether that is good or bad, I leave to each person to decide for themselves. I'm not saying I don't hate it or get frustrated by it, but I no longer rage and shake my fist at my crappy immune system. In fact, I am not even doing any of the DMDs anymore. I remember in the early days after being diagnosed, whenever I heard of someone willingly not doing any of the DMDs, I thought they must be crazy. I never thought I would be one of those who stopped clutching my sheets with sweaty palms at night, worrying about not having that 30% (more or less) reduction in disease activity or whatever, but here I am not caring. I was getting so bad about giving myself my shot that I only did it once or twice a week, just to be able to show my family an itchy red welt to prove I still was doing my shot, kind of. I talked to my neurologist about it, we tested me for the virus (is it JCV, JVC?) that excludes you from taking Tysabri. I tested positive (good thing I quit doing Tysabri) so that was out, and she and I agreed to stop with the facade of doing Copaxone because there is no benefit to taking it so little, and just waiting for some of these new meds to make their ways down the pipeline. Now I have 3 months of Copaxone chilling out in my fridge, waiting for a good home. I would like to find someone who is really struggling with being able to afford it to give it to. It is house broken, crate trained, and ready to cuddle with its forever family. If interested, contact Blindbeard at Blindbeard's MS Medicine Rescue.

Lastly, I have a few words to say about architecture. The other day Princess asked me how it feels to play the same game that little kids play. She was talking about my enjoyment of Angry Birds. Yes, it may seem like a game for little kids, but that is only if you look strictly at the graphics. Those damn egg stealing pigs are architectural geniuses! Their structures are marvels of engineering! If we could build stuff as ridiculously strong and stable as they do, no tornado or hurricane could ever destroy any home or building, EVER! There is more to the game than just flinging birds at those irritating, albeit very cute, pigs. It takes some finesse and figuring to bring down those structures. I get so angry at those pigs, I swear I'm going to have bacon for my next meal. Princess hates when I say that because it makes her hungry for bacon. I'm just hungry for revenge and my eggs back! The only complaint I have, other than their building skills, is how they get black eyes and lose teeth. It makes me feel bad, but then they smile when I don't beat the level and I swear I'm having bacon as soon as I finish that level and go to the store, or they give me my eggs back, whichever comes first.

What Color Is Swamp Ass?

It is imperative that I know the answer to that burning question because I am trying to draw the Swamp Ass Swamp and can't seem to find just the right color. At first, I was drawing the swamp as the starting point for a game board to mark progress for my little sister, who has just started a vet tech program that is accelerated and promising to be an intense next 2 years. But then things took a turn that I was not interested in them taking, and now I find myself in that swamp with Sugarbowl, trying to navigate my way to the finish line. Why did I have to make such a long path to the finish? It wasn't so bad when I wasn't on that path with Sugarbowl -- I don't mind others' suffering, only my own -- but now all the obstacles that I have to go through seem very obstacle-y and long.

Before I go into why I am now a player in that game, let me give a rundown of the board itself. I took Cookie Monster and Burt out of my Walk Along Sesame Street game, cut out pictures of my face and Sugarbowl's, and stuck them over their faces. I am Burt and she is Cookie Monster. We start out mired in the Swamp Ass Swamp, ride the Beginner's High roller coaster, which then plunges us into the Homework Ocean. From there we must navigate our way through the I Have To Stick My Finger Where forest. I'm looking forward to that forest strictly to enjoy Sugarbowl having to lift tails and insert her digits, and hearing how she deals with it. And that promises to be a great story, she having the most sensitive gag reflex of anyone I have ever known, and anal glands being the worst thing I have ever had the displeasure of smelling. From there we will mosey into the swirly twirly Slumpy Mountains. They being so swirly and twirly one must go slow through them, hence the hideous slumpy-ness of them. I fear those slumpy mountains because I really hate the slumps. If we make it safely through those, we enter the dark tunnel of Is There A Light At The End. If we can find the light, it is the light of our goals. It's going to be one heck of a journey and I most certainly was not interested in traversing this path, but traverse it I must, because. . .

I found out earlier this month that my ex has started dating someone. The shock of that put me into a pity party in the middle of the Swamp Ass Swamp. It's not that I begrudge him dating, it's that I want to be able to go out and do those kinds of things that can result in meeting someone, instead of turning into a pumpkin at the hour when most people are gearing up to go out. And then my pity party really got rocking and rolling when I started thinking about who could possibly want to be with me. I have no money, no energy, but plenty of MS that promises more fun in the future. When I was saying this to Princess, she came and put her arms around me, told me that she wants me, and that she loves me more than I love her, which is not possible, but very nice to hear anyway. I have to be 100% honest and admit that the hurt of him moving on is at least equal to all the other hurt from not being able to go tear up the town myself. Why does someone getting over you hurt so bad? And why does it mire me so deep in that swamp? At least I have a game board to track my progress to my goal of. . . not sure what my goal is, but I will let you know when I figure it out.

Mountainous Expanse Of White Flesh

Princess came in, saw the title of this post and said, "You're writing about mom?" Sharp as a tack, that one. We just got through another fabulous blow out fight in our house. The best analogy I have that sums up Sugarbowl's and my relationship is to compare it to a pressure cooker, especially the old ones that exploded so easily. My mom said that growing up they had one and my grandmother forgot to let off the steam one time and green beans got blown all over the ceiling. The pressure builds up and we have to vent at the right time or risk a big explosion. We didn't vent soon enough this time and our relationship green beans got blown all over the ceiling. The reason for the fight is not particularly interesting, in fact I'm not sure what started it all, but once Sugarbowl gets mad/hurt/upset etc. her Borderline Personality Disorder comes out to play. I don't like that playmate. It really sucks, but someone has to stand up to its hideous bullying ways, and that someone is always me because I am the one person who can tell her to shut the hot hell up and knock her crap off and still be friends with her again. This time she disabled all her electronic stuff so no one could use it. She took all the cords to her TV, DVD player, computer, phone, the wii and so on. We all made up yesterday and she started to bring down the cords from her room and slowly put them all back. I didn't want her to know how much I was missing some of those electronic things, so I read my brains out the last 2 days, which is great but sometimes you just want to kick back with a movie. I took back my robe that she stole from me awhile ago and kept meaning to take back, but she is always naked when she wears it and until I can boil it I have no use for it. Last night I woke up to her naked in my room trying to set the computer back up because she wanted the wireless stuff back on. It would not have been so horrible if all the needed cords were in one area, but she had to go around my bed, plug this in, go back around and put this one here, apologizing the whole time for her nudity because she couldn't find the robe. I didn't bother to tell her it was stuffed in my closet. Some things are better left unsaid and I didn't want to extend the conversation any. I just wanted my room back so I could go back to sleep without the risk of waking up to that sight again. Things should be better soon because the neighbors in the other unit are moving out and she will be moving over there. So when we fight we can go back to our own side and beat on the walls to annoy each other instead of having to argue in person. The neighbors are moving out because they can never seem to remember to pay rent and are being evicted, which has made them very pissy. Not sure what they told their friends across the street, but I can feel the daggers being stared into my flesh whenever we see each other. We have given them so many chances and warnings to pay rent on time, even letting them get really far behind because they were having some financial problems, but it was getting ridiculous. Plus they have a very mean pit bull that scares me and they play their music really loud. All these things add up to me not caring how much the neighbors across the street may think we are in the wrong and hate us, and instead accepting it all as a good exchange to be rid of them. I really hate that dog and am hoping that when it does hurt someone, as it is bound to do, it is one of the owners and not an innocent person. I could be out working in my yard without my dogs, and it will try to charge me. You don't even have to be doing anything, just sitting on your porch, and it will try to get at you. I hope something happens to it before it can do anything to any other animal or person. Keeping my fingers crossed here. Other than that, my MS is as much of a hoot as always. Lately my legs have been feeling so weak and shaky, especially as the day goes on, that I feel like a newborn colt trying to get some errands done. It scares me to have these kinds of problems with my legs because I DO NOT want to lose my ability to walk safely. In fact, I am more likely to take injuring myself over needing better support than a shopping cart or an arm can give. That will show you, MS, when I fall and get hurt instead of doing the smart thing! I hope it burns, because I can be a hardheaded ass all day long. I may need to stock up on Ace bandages while running errands today. It's worth it.

Excuses, Excuses!

Why has my usually overly verbose self been so silent of late? I have a whole plethora of excuses that no one will buy into, yet I offer them for your consumption anyway. Never mind the expired date on them, you won't get food poisoning, or lock jaw (keep your fingers crossed!).

The main reason for my silence is because -- let me check the area to make sure no one is within reading range -- I have become something of a recluse. My family always accuses me of being one, and I always argue that I most certainly am not! Then I beef up the number of times I have left the house to make myself look like a social butterfly. Why have I been so reclusive and hermit-like? I was shopping with Sugarbowl a few weeks ago when I noticed that my right leg was shaking and feeling very weak, like a newborn colt's. My hands were shaking and doing intention tremors, making it very difficult to hold anything, take a drink from my soda, cross off things from our list, etc. etc. I was embarrassed to be out in public shaking like that, which may have fed into what happened next. I started having muscle spasms from about my Hug area up. My upper body would clench then release on a rhythmic cycle. I can't remember the last time I wanted to get home so bad. We were about 30 minutes from home, and I spasmed the whole way there. If you have never had repetitive muscle spasms, let me tell you how painful they are. My body hurt so bad that night and the next day, I lived on NSAIDs. I knew that my face had been spasming, to the point that my mom, who had not seen me for about 6 weeks, asked if I was having facial spasms or a seizure. (We were at Princess's basketball game and she was going to take me to the restroom to seizure in private if it was seizures.) I can feel my face contort, but I didn't know it was so obvious to others. I thought it was just a barely perceivable twitch, but Sugarbowl said I do this thing with my mouth and she can tell how bad of a day I'm having by it (how often it twitches, how deep of a twitch, and so on).

The best medicine for my spasms is not a muscle relaxer, as one would think. Yes, it helps the muscle stop contracting so tightly, but it does not help that creepy crawly feeling I get when the next spasm is building up. It is marijuana. I have been blazing it up so much at the first sign of a spasm, that I thought this hideous sore throat I have right now may have been caused by it. I finally broke down and went to the doctor after suffering with a throat that feels like someone stuck a shotgun down my gullet and pulled the trigger, spraying shot all over my tonsils, for several days. I was afraid that he would look down my throat and tell me that a massive resin buildup was causing my throat to hurt so bad I would rather let my saliva build up to the point of overspill than swallow. I have tonsillitis and Sugarbowl has a great story to tell everyone for the rest of time. I suppose it is only fair because I have the story of her being full of sh*t, and that makes it worth it.

I have done a ton of research into these spasms and was greatly relieved that they are not an attack, and are usually self limiting, so I can become the social butterfly I say I am to my family, yet have never been in real life! YEE HAW! Or maybe just go do stuff without worrying about the spasms starting up. As the day wears on and I start to get tired, they fire up, and I light up (not cigarettes; I am still smoke free). Something great came out of all this. I was getting tired of my usual movies and crap that I watch when in my down time, because keeping my spasms company is very boring, so I wanted to branch out into something new. I decided to try out The Office because I enjoy Steve Carell and had heard so many great things about it. You may now count me as a fan. A twitchy, spastic fan, but a devoted fan nonetheless. We have Netflix through our Wii, so I can watch all the seasons on that until I can buy them, and buy them I will! Along with a Schrute Farms Beets t shirt, because that is just too great to pass up. The only bad thing about it is that Princess likes it too, but she is not as far as I am so I have to keep all this great stuff to myself until she catches up. The strain of keeping my mouth shut hurts almost as bad as my resin coated throat. And that is saying something.

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.

APB

We got an APB out on one Blindbeard. That's one Blindbeard. She was last seen traipsing through Arizona, New Mexico, and Colorado in an embarrassing pair of spotted pajama pants, looking like the frumpy tourist she is.
We have reason to believe that she changed her clothes in Colorado, where she stopped for the night, and is now wearing something more socially acceptable, but don't count on it. If you see her, contact her family immediately so they can hide from her. She is not considered dangerous, just crazy -- and hopelessly uncool -- so they would rather not be seen with her as she will only ruin what fragile hopes they have of not being uncool by association.

She was traveling in her sister's car, which is a traveling trash heap, so keep your eyes out for a mobile dump. You will hear her bitching about the condition of the car and her sister telling her to shut her dirty pie hole about it. This conversation will be heard for miles around and will give a good idea of the general vicinity of her whereabouts.

She usually wears a stocking cap in winter, but if she does not have a hat on, you will know her by her mane of woolly hair that resembles a camel's butt. She has a distinctive walk, dragging her right leg along, and crabbing about how everyone walks too fast and she can't drag her leg that fast, so slow down, bitches. She tends to need to urinate more than the rest of her party, and was spotted using the men's room 3 times during this trip because women are so damn slow in the bathroom, and she would rather have her family embarrassed when she comes out of the men's room than wet her pants.

There is no reward for finding her, but her family will be eternally grateful to whoever finds her because they wouldn't know what to do with themselves without her to bumble around and embarrass them, making them look better -- if they don't decide to go into hiding. Please keep your eyes peeled and avoid her at all costs, or she may try to adopt you and ruin all your hopes of being cool.

Why Am I So Slumpy?

I just can't shake the slumps right now. Is it holiday non-cheer? I do tend to get that a lot, especially when thinking of all the things to do to make it a good holiday for others. Is it the nagging feeling that I keep churning out rugs and forcing them onto people and then suspect that they may not really want them are are just being nice? That's silly! When have I ever cared what others think? They will take my rugs and keep being nice because I have no intentions of stopping until we can all play the Princess and the Pea on piles of rugs instead of mattresses. Maybe it's MS related slumps. Just when you think you are coming to terms with this disease, it pulls out something nasty to remind you why it is so hard to accept it. And am I the only one who gets worse in the winter? It seems most of my attacks have been in the winter, and my symptoms get worse in the winter months, too. My TN first kicked up in January a few Januarys back, and now I dread January 'cause I don't want my TN to get any worse. My hug first started in March, and now March is a worrisome month for me. I don't want my hug to get any worse -- even though some days that is hard to imagine, but MS has a very creative mind and can be very devious. It is best not to underestimate its diabolical-ness. Maybe it's because I can't get any sleep yet am still dead tired all the time. Oh, MS, why must you be such a devoted minion to Satan? I've been up for longer than I care to admit. I was falling asleep on the couch last night, so I figured I would get a good night's sleep. I had taken a muscle relaxer because my hug wanted to snuggle, so sleep and I should have skipped hand in hand for 8 hours at least. Har dee har HAR! I turned off my light at 9:30 and woke up at 2:30 am. In those few hours, my bed turned into a slab of concrete that made me ponder getting a pile of rugs to sleep on. Even with a pea hidden in them, they would have been more comfortable. I forced myself to lay there until 3:30 -- my new 4 am, which used to be the earliest I would get out of bed -- then bitterly raised the white flag.

The day is yawning open in front of me with the promise of nothing to do to make time move along, little doggies. Sure, there is plenty I could/should do, but who wants to do any of that? Not me, that's for sure. I'm far too slumpy to find any interest in anything. That's not 100% true. I do have a deep interest in Mystery Science Theater 3000 right now. If anything can help the slumps, it is that show. It is the only thing I have found that gives me any relief, and with so few side effects, too. Sore cheeks and chest muscles from laughing are a small price to pay for the slumps to recede for a bit.

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.

Damn This Guilt!

I hate feeling guilty. I think guilt and jealousy are the 2 worst feelings there are. Both will eat you alive and destroy all reason. I'm not feeling any jealousy at the moment, but I am feeling guilty. Intellectually, I know I'm being dumb, but emotionally, I feel guilty. Feeling attack-y, and in a criminal amount of pain, I am not up to my usual sub par level of functioning, and Princess has been picking up the slack. Bless her buttons! She has been doing all the things I usually do without any complaint or grumbling, which she would do if I were feeling fine and made her do those things. She has made dinner the last couple of nights, and brushed off my apologies for being unable to do it with a terse, "I'm not a baby!" I know she's not a baby; she will be 13 in February, but I still hate having her do so much. I know it is the foster parent in me. I want kids to be kids and not have to worry about keeping things together. They shouldn't have to worry about whether the bills will be paid or not, making the meals, doing all the housework, etc etc. I believe in them having chores, but not doing most of the work. It bothers me beyond words to have Princess have to do so much. I don't want her to have to care for her aunt regardless of what a baby she is not. I want to do the basics to keep the house running, not her.

I worry about her being embarrassed to be seen in public with me. She says I'm being stupid. She doesn't care and isn't even slightly embarrassed. I worry about other kids treating her differently because she lives with a diseased person. I know how kids are; I know they don't want germs from someone who has a disease. I remember not wanting to take candy from disabled people on Halloween, thinking it would be tainted somehow. And I was right! Look at me! I worry that she may not want me to come to her basketball games because people will see me and know I'm her aunt. She says she doesn't care what people think -- excuse me while I wipe a tear from my eye -- and wants me there, even if she has to wheel me in on a hospital bed. She told me the other day that since I have been diagnosed, she sees people with disabilities in a different light. She sees them like she sees me: a regular person stuck in a body that doesn't work the way it should. If anything good has come out of my having MS, it is that. The fact that she sees beyond a person's disability and sees the person.

That little girl -- excuse me, young lady -- is the joy of my life. I love her more than I love anything else on this earth. I love her more than you should love something that can be taken away from you. The other day I hugged and kissed on her and told her that I would have no interest in this world if she is not in it. I would have no interest in this life if she is not a part of it, so she needs to make sure nothing happens to her. She said she has no intentions of having anything happen to her and that she feels the same way about me, so nothing can happen to me because she will always need me in her life. That helps lessen my guilt about not being able to do more around here right now. Doesn't wipe it out completely, but does help take some of the sting out of it. I'm glad she would rather have to make frozen pizzas for dinner than not have to and not have me. It makes me think I should believe her words and stop feeling so guilty about what I am.

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.

Maybe I Shouldn't Say This. . .

But the posts that I think maybe I shouldn't post seem to be the ones that I get the most comments from. Sometimes, when getting ready to hit that publish button, I wonder if maybe I should not publish what I've written. But then I do it anyway, because I think that there may be others who can/will relate and maybe they will feel better knowing someone else is in the same ship o' fools (I have a place in the cargo hold on that ship). So here goes.

Why is the thought of suicide an almost constant companion for me? Now, before you all start calling the loony catcher and trying to get me EPC'ed, let me say RIGHT NOW that I have no intentions of acting on these feelings. Mainly because of my family. I don't want to hurt them, or leave that legacy to my nieces and nephews, but mostly because my little sister says she will put my dogs down and have me embalmed and sealed up air tight so my body will be around for decades. YUCK! I don't want my dogs put down because of my stupidity, but more than that, I do not want to be embalmed. The very thought of it makes my flesh crawl and my stomach sick. I want to be cremated. It seems natural and embalming seems the opposite of all things natural and pleasant. That is just me, and I respect every one's right to do as they please with their earthly remains. Being an earthly remain, I want to go back to the earth immediately. Not in four score and 7 years from now, not in a fortnight, not in half a fortnight. NOW! I don't think my carcass needs to be kept around and I know she would do it too. That keeps me far far away from any possible life ending things. I hope we are all clear on that. I don't want a bunch of touchy feely comments because they don't change how I feel about myself, even though they are sweet and give me warm fuzzies. Moving on.

Maybe it is this whole recent court thing. I got my "Unfavorable" decision already, no surprise there. Judge Moldy Twat decided that I could wait tables or go back to working as a sales rep in a department store. She pooh poohed my claims of pain because they are subjective and what do I know about my pain? Not a thing compared to her Most Honorable Rotten Crotch. So the process of appeals starts again. She did do me a favor by not dragging her saggy arse about getting her decision back to me, which probably strained her main butt plugged anus vein doing so, but I have to try and look on the bright side. The very thought of waiting 50 bajillion years for all the appeals to get moving makes me very tired and depressed. I'm going to file for SSI but I'm feeling so down about the whole thing that I would rather grab my little sister's 22 gauge and climb to the top of the court house, set my sights on a dried up old crotch yodeler and do it all for those of us who are taking it up the wazoo thanks to the SSA. My ex has a friend who's dad was dying of cancer and applied for SSDI to help out. When he got turned down, he went to the SSA and told them that he couldn't even wipe his own ass -- he was in a wheelchair -- let alone do the job they had come up with. He died 3 years after he initially applied and never got disability. Things like that fill me with so much hate and anger that it fires me up to beat the SSA and reminds me exactly why I won't bow out of this life and let them win.

I know my thoughts of suicide stem from my hideous depression, which is under control per Judge Old Moldy Crotch. I think my biggest mistake is not telling my shrinks, neurologist, neighborhood beggar, that I feel this way so much of the time. I hate admitting that sometimes I get so tired of having MS, that I would rather not have any life at all. I accept that I have MS. I cannot accept the limitations it imposes on me. I hate not having a say over my body. I hate being the way I am. My dragging leg, this damn fatigue that strictly limits my activities, the stupid hug that takes my breath away when it drags that hot knife down my body. The whole MS experience gets so old that I just want to be done with it some days. Other days, I have the strength to say, "F*ck it." In fact, most days I do have that strength, but I still have that nagging voice that is ready to pipe up at the first sign of weakness and tell me that I'm just a drain on my family and society, and maybe it is time to raise the white flag. As a sign of not having any intentions of doing anything to harm myself, I even keep razor blades in the house (they are great for scraping off hard water build up). I'm not going to cower in fear of what I may do and have nothing sharp in the house. I'm going to have the courage to realize that we all have options and I am opting to not act on any negative feelings I may have. I'm also opting to remember that my family would rather help me out and have me be here than save those few dollars and not have me here.

This is an ugly subject, but everyone has suicidal thoughts from time to time. Whether they are just a fleeting thought, or something that hangs out for awhile, they do surface. I don't like feeling this way. My family knows that I'm down, so I'm not allowed to be alone. I accept that I've made some bad decisions in the past and lost their trust, so I submit meekly to being babysat. If it keeps my dogs alive and me from being embalmed, it is worth it.

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.

How Could I Have Forgotten?!

All my blogging nonsense and I forget the most important thing that is going on in my life right now! I hope you are all sitting down or near a soft place to faint on to, because this is quite shocking. My new disability hearing/court date thingy is this Friday. I was surprised that it was so quick and when I called my lawyer, she said she was surprised too, which made me feel a little special and like maybe the government finally got my memo that I'm not going to slink away and let this whole brouhaha blow over. I do enjoy a good brouhaha and the government, or Social Security to be more exact, has gotten my hackles up and made me ready to fight to the death, either mine or the SSA's. Preferably theirs even though I will take one for the team if need be, and hopefully that need won't be. My lawyer said that because it was remanded back, that put me at the front of the line for a hearing. Sorry to all you poor saps behind me, but I've paid my dues and waited in that line for 5.5 years. And that is one sh*tty line. One anger inducing line. A line that only makes you that more determined to win.

My little sister is going with me. 1. To drive. Even though it is only an hour away, I don't do longer-ish car rides well. Especially if I am driving. It makes my legs more stiff and jumpy, which means I will be doing Cricket Legs later that day. (Note To Self, figure out a way to make music when rubbing legs together. I'm sure everyone in this house/neighborhood would enjoy being serenaded by a gimp trying to start a fire by furiously rubbing her legs together.) 2. She is willing to testify if the judge allows it. This is good and bad. She could really help my case by telling what she knows about how I am. Bad because I'm not sure I want to hear it. I hope the judge will let me leave the courtroom if she does testify. I know what I am, but I am not quite dying to hear someone say it out loud. I'm also afraid it will make me feel worse about myself.

I realized that I didn't have any nicer clothes to wear to the hearing -- why would I need dress up clothes to sit around the house? -- so I went to Goodwill and got a pair of khakis for 99 cents. It pisses my little sister off that I can get so many 99 cent clothes because she has to look in the fat girl sizes and says that I get to shop in the skinny scrawny ass hole sizes while all the other fat girls race in before her to get all the good clothes in her size. In fact, it pisses Princess off too. I am only 5 lbs heavier than she is and am 4 inches taller than her. Everyone was hoping that my being laid up with this damn knee would make me gain weight, but something about pain makes one not want to ransack the kitchen. I thought I would gain weight too, but I have actually lost a few pounds. Princess is saving her money to hire a hit man to come break my knee caps and force feed me. The other day, while doing my laundry, I wore a pair of her jeans and when she came home and saw me, she started counting her pennies to see if she had enough to hire that hit man yet. If losing 5 pounds would make my arse as firm and dimple free as hers, I would start fasting now. She doesn't get that what the scale says means nothing. It's all about what you look like, and I do not look like someone who is only 5 pounds heavier than her. Oh to have the flat stomach of a 12 year old! If I had her hips, thighs and butt, I would wear the tightest, most show off-y clothes I could find at Goodwill. Then Sugarbowl and Princess would pool their pennies and I would be laid up with 2 bad knees. I probably still wouldn't get disability though.

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.

Dear Blindbeard

Dear Blindbeard,

Oh, Blindbeard...I hope your head/eye pain is receding. If it turns out to be a bout of optic neuritis, will you do a round of steroids? Be well...

Long time reader, first time comment leaver-

Lori


Dear Beautiful Lori,

I always said that the only way I would do the steroids again was if I lost my vision, so. . . yes? Wait, no. Definitely maybe! The steroids make me so sick and crazy that I'm afeared of doing them again. It is such a miserable experience for me; I worry about going off the deep end again, and I worry about the other hideous side effects. The horrible heartburn, the raging insomnia, the most disgusting taste in my mouth that nothing will get rid of, the insatiable appetite that makes me take jars of peanut butter and jugs of milk -- and I NEVER drink milk -- to bed with me. But then I remember when my hug first started up and how much pain I was in. I was ready to do the steroids then if it would give me any relief. So it's always a possibility. A possibility that I hope I never have to do, but pain and misery can drive a woman to actually listen to her neurologist, so I may give in to her and do them if I am feeling too bad. Ugh! I would rather order all my books in Braille than go through steroids again. It would probably be a heck of a lot cheaper.

Love,
Blindbeard



Dear Blindbeard,

Big Fan! I've read your whole blog. I don't have MS, but I don't NOT have it either. ( I have the lesions and meet all the diagnostic criteria but have another disease that my doctor says "covers" MS as well) Anyway, I wanted to let you know that I like that your blog is not all MS all the time. Its refreshing to hear about all of the aspects of your life. When I first started getting sick and started reading other blogs I was worried sick(er) that my life was going to be miserable. You have helped me to be mostly positive (when I have the energy) and to concentrate on living my life and not just being sick.

Amy


Dear Beautiful Amy,

This is the best comment I have ever gotten! Sometimes I think that maybe nobody wants to hear about how, yesterday morning, the middle sized dog cleaned himself to completion on my pillow! I'm not saying that I never reach completion in my bed, but I don't do in on my pillow, right by a just-waking-up person's head! If I didn't know better, I would have thought he was having a seizure. I can't remember the last time I got out of bed so quickly. Or how Sugarbowl and Princess were fighting the other day, so Sugarbowl locked her computer so Princess couldn't use it and now she can't remember her password so she's locked out too. Or how I've been thinking of taking one of these adorable little toads that are all over the place and keeping him as a pet. I have already picked out the name, Toadly Winks, but am not sure the upkeep is worth having him/her. Or how this heat has made me melt into a pile of warm jello and my pit juice keeps running off like the 2 bit whore it is. One day I told Acorn that my pits felt like they had died and gone to hell. About 5 minutes later, I felt a tickle in my pit and a spider came dragging its way out, thankful to be alive but needing years of therapy to recover from the experience. These are all the little nothings that make up the part of my life that MS has nothing to do with, ie all the fun parts.

Love,
Blindbeard

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.