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?!

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.

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.

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.

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.

I'm In Love With Mary Jane

That's right! I said it! Beings as I'm always the last to figure anything out, I just recently discovered how much marijuana helps my MS. Sure, I had heard about it and my ex was always trying to get me to do it, and he is not a smoker of any kind. He heard about Montel Williams smoking it and decided I needed to do it too. About 4 years ago I tried it because my left eyeball was killing me. It worked, but it made me hungry and tired -- 2 things I didn't need any help with after gaining 55 lbs from the steroids and struggling with a depression that wanted me to sleep all the time. Now after 4 years of getting to really know my MS and having tried all kinds of different meds to help me with pain and spasticity, I found something that works better.

My little sister came over one day when I was in a foul mood due to a killer pain in my legs and face. She had some wacky tobaccy so I asked her to share some with me. I could not believe how good I felt after smoking. The pain in my legs and face went away and suddenly my legs were not so stiff and I felt like I was walking like a normal person. I felt so good, I didn't want to sit. I wanted to walk and walk and walk, because I couldn't get over how great my legs felt. I slept like a baby on a double dose of Nyquil and felt so rested and not so stiff the next morning that I wanted to shout it from the roof tops that I'm in love with Mary Jane.

When I started doing more research about the effects of marijuana on MS, I was even more convinced that I need to smoke it. It may even slow down the disease progression. When my mom read all the stuff I had found, she wanted me to smoke it more than I already was, and my mom is a SQUARE! In fact, she drug me outside and sat on the porch with me to smoke because she said it is a bunch of sh*t that I can't do this legally (in Nebraska) and she would go to court with me to give anyone an earful that is feeling lucky enough to take on my mom. And my mom is one tough old bird.

The only down side to my newest favorite pass time is that I don't get "high" like back in the day when I didn't smoke it for medicinal reasons. Sure, I feel good, but I don't get all giggly and stuff. Maybe because I'm more interested in how great my body feels? I don't know and I don't care. I do know that it takes away my pain and lets me sleep better than I have in years. Ahhh, Mary Jane, lets run away together, like to Colorado, where we can love legally.

I Guess I Didn't Need That

Good thing I have MS to play Big Brother for me and get rid of the stuff that I don't need or want anymore, regardless of how I feel about those things. According to my MS, I have been hoarding things that need to go, like my right leg. And both of my knee caps. Also my MS decided I should never forget about the trigeminal nerve on the right side of my face. It hugs my chest exactly where a bra strap goes so I find wearing anything but a sports bra uncomfortable -- it decided that I need a uni-boob because the whole "lift and separate" thing is overrated. Thank goodness it pointed out that a stagger and limp are so much more attractive than a regular walk. Who wants to blend in when you can stagger and be an object of interest to the public?

But MS is also a giver. It helped me start an interesting cane collection and knew that I needed a medicine cabinet stuffed full of drugs. It helped me fill my refrigerator with shots that I have to worry about being broken because that is a lot of money there. But MS has made sure that I don't have any money to worry about, because it is an expensive disease.

MS worries about me getting enough sleep. It worries so much about that that I never have to worry about it because it is there to make sure I get my rest. It never wants me to overexert myself so it put a limit on how much I can do before I become too fatigued. MS doesn't want me to get a heat stroke so it made me turn into a puddle of warm jelly in the heat; a puddle that runs to a cooler place at the first sign of melting.

MS decided that short term memory is too much baggage and tossed it overboard along with my ability to recall words when tired. Luckily I am still able to gesture and do a sort of charade to show people what word I'm trying to recall.

Now MS has decided to make my right arm numb and tingly, to keep my right leg company, I suppose. It enjoys giving me those "electric shocks" up the right side of my body, up into my hair, making my scalp crawl in the grossest way. Until it decides to give me my right arm back -- if it ever does -- I'm just going to have to trust its judgement, regardless of all its bad choices in the past. But we all make mistakes.

Good To Know

Now that I have Acorn with me, I have been trying to fill her in on all things MS. She hasn't lived with me since my diagnosis and hasn't spent large quantities of time with me since I became such a broken down old gimp. I've been giving her a crash course in all the things she will need to know if she lives with me -- good thing she is such a good listener to my good talker. Among the important tidbits that she needs to know are these gems:

*I'm tired. No, really, I am tired! As the day progresses, I get more tired and need to hold down the couch more and more. By afternoon I will have to balance my activities by rest, get something done, rest, try and do something else, rest, eat as much junk out of the kitchen until I need to rest, rest, I think there is still some peanut butter and cake mixes left... better get on those.

*I can walk short distances without too noticeable of a limp, but anything more than that and I will be dragging my right leg along. And that gets very tiring. I showed her how to do an arm for me the best way. My little sister has it just right; my mom grabs my arm (instead of letting me take hers) and walks so fast I get drug along behind her, great for energy conservation, bad for the knees of my jeans.

*I forget everything. I will forget what I was just talking about. I will forget what you were just talking about. I will ask the same questions over and over again and never remember what the answer was or that I have even asked that question already. I will forget what I was planning for dinner and what is in the pot that is burning on the stove. When I need to remember something, I tell whomever is with me so they won't forget and it will get done. I carry about 5 million little notebooks to write down things so I don't forget and it is VERY important that I carry them all in my purse, which resembles a suitcase more than a purse, and, yes, I must carry everything I own with me at all times. Why do you think I need to drag around my suitcase/purse? I couldn't possibly only take what I need, I must take everything.

*When I push myself too far, which I have gotten very good at listening to my body and slowing down when I feel my strength ebbing but it does still happen sometimes, I need to rest NOW! And it would be nice if you would drop grapes into my mouth while I repose like the goddess I am.

*I am showing her how to do my shots and explaining that even though she has to feel me up to make sure she is not injecting into an area that is still swollen from a previous shot, it does not mean that we have to take our relationship any further. I don't usually allow anyone to feel me up on the first date, but she and I have known each other for a few years, and even though I want to just be friends -- it's not her, it's me -- we can cuddle sometimes. She can do better than me and I only want her to be happy.

Of course I have been running her through all the ins and outs of what MS is and what it does and how it effects one, which is all that boring crap that, if you are like me, you are bored stiff with. She is a good student and interested in what it all is and is not, and she has the arm thing down just right so my jeans may last a little longer.

Courage And A Little Hope

At the MS gym that I am now a proud card carrying member of, which I never saw coming due to my negative preconceived notion about it, they are making a quilt to raffle off as a fund raiser for the gym. They want everyone who is so inclined to to take a square, make a design that represents them and how they feel about MS, how they deal/fight it, and write why they chose that design. I took a big square and a little square, not out of greed but because they want people to make both if that is their wont, and it is my wont. I puzzled over what I would do. I tossed around different ideas, like making a big friendly dog with a blank look, because that is how I feel when I go in there. I go in happy to see everyone and feel like I slobber all over them, which I probably do but they are too nice to tell me so. I finally came up with my idea and am now going to share it with you. No need to thank me; I'm generous like that.

I am going to make on the big square the Chinese sign for courage and on the little square the sign for hope. I have always said that for me having MS is more about courage than hope, and if I ever get another tattoo -- highly unlikely, the 2 I have are more than enough -- I would get the symbol for courage.

Hope is all well and good in a passive kind of way. I do have hope for the future and what may come of studies about MS, but I can't put all my diseased eggs into that basket. I do not foresee a cure for MS in my life time and can only hope for better drugs to help slow it down. I hope for medicines with better efficacy and with less side effects to come down the pipelines soon, but don't want to pin all my hopes on that lest I be disappointed when they do not come down that clogged pipeline.

Courage is active and I like active. For me, hope is sitting back and waiting, whereas courage is facing what is. Do I have the courage to face what this disease has done and most likely will do to me? Some days I do. Other days when I think about what the future may hold for me, I lose my courage and get scared. Then I start wrestling with the "what ifs," which I HATE and try to remember that I need to deal with what is right now and worry about the possible outcomes when they come. I want the courage to look this disease in the face without flinching. I want the courage to deal with what may come and to accept it with grace. The courage to deal with how the public may react to me -- mainly because I struggle with that some days and want the courage to go out even on my worst days instead of hiding at home. This is a scary disease and I think "courage" should replace "hope" as our catch word. It takes a lot of courage to face this disease and I need as much as I can get. I don't want to be the Cowardly Lion anymore.

This Blog Is Brought To You By:

Copaxone, "Leave no area uncovered!"

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We will help you fill up any empty areas of your bookshelves. The makers of Copaxone know that the 521 books you already have about MS are not nearly enough, so they will send you more, even if you didn't ask for them! We will even send you several copies of the same book so you can share with friends! Act now and we will even send you our daily planner that highlights all your possible injection sites on every page! Whip it out and impress people with how dedicated you are to all things MS!

Your mailbox will overflow with all our correspondence! We will send you more letters repeating the same things than you will ever care to open, let alone read! We don't want you to ever doubt how dedicated we are to you and you making sure to inject yourself every day! Your mail person will want to curse our names for sending so many love letters to you!

Forget a phone that doesn't ring! People will think you are the most popular person around with all the phone calls you will get from the makers of Copaxone! We will check in with you as much as possible to make sure you are having no problems with our product and to see if you received all our free gifts. You will find yourself avoiding the ringing phone instead of being glad some one finally called you!

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Lethargic Lassitude

I have not been taking my anti fatigue meds because I'm an ijit and have forgotten how incredibly lethargic I am without them. I, in my infinite wisdom, thought that I would go off them then start them again to get maximum energy levels like when I first started them. I'm going to have to scrap that plan or risk melting into this couch and never being heard from again because my roomies will never think of lifting the cushions and cleaning under them. I'm so ridiculously tired I have been taking long luxurious naps, going to bed early and almost hitting 7 hours of sleep at night. I don't know if I can handle so much rest. My body may go into shock from being so over-rested.

On top of skipping my anti fatigue meds, my coffee maker broke yesterday and all my cussing and giving it Shaken Coffee Maker Syndrome didn't fix it, so it is obviously unfixable. I had to drink instant coffee, which is akin to drinking cat piss after so many years of real coffee. The good news in all this is that my bff at my exercise class had bought a fancy "gently used" coffee maker at a garage sale (they were selling it because the noise bothered their new baby) for me. She was thrilled that my coffee maker died so that she could give me the coffee maker she had bought for me and I would actually need it now. I was thrilled because I had to lug my lethargic arse into my exercise class while thinking negative things about having to spend my money on a new coffee maker when there is so much useless crap I would rather spend my $2 on.

Princess is enjoying my lethargy because she gets the computer more now. She, in all her lovely 11 year old just-been-hit-with-a-huge-greasy-puberty-stick-ness, is on a mission to try and beat all my high scores on Facebook. The other day she was playing some pearl worm game and told me that whenever she plays it she wishes she had a pearl necklace. Luckily I was turned away from her so she didn't see my face when she said it. Someday I will tell her all the things that are wrong with that statement, all the things I'm NOT saying to an 11 year old.

The good news, my fellow MSers, is that I am going back on my anti fatigue meds. This experiment has been a total failure and I am ready to join the land of the living again, so expect more nonsense from me. My house is a mess and the laundry is in a janga tower that is threatening to fall on us and smother everyone in this house. Now I must drag my lazy butt over to my medicine cabinet and get my meds -- this would be so much easier if I wasn't so lethargic.

This post has been brought to you by the letter L and the number 11. "Sunny day, sweeping the clouds away. Can you tell me how to get, how to get to Sesame Street?"

The Worst Nights I Ever Weathered

Friday night my Hug was squeezing the living turds out of me (cue Princess saying, "You have turds living in you? Mine are all dead."), so I took a Flexeril to help loosen that hug and get some sleep. Great plan -- usually. That night the big dog, Gus, had the runs. I had seen the dogs snarfing the overripe and fermenting pears that had fallen from the trees earlier that day, ignoring our long talk about eating things that could potentially upset one's stomach and the need for caution before unhinging our jaws and swallowing things whole like a snake. But the dogs eat a lot of things that, at best, would give me the trots too, or, at worst, bring about my untimely demise. So I wasn't worried about taking Flexeril that night. As anyone who has tossed that lovely sleep inducing pill down their gullet knows, you sleep like the dead. The big dog usually wakes me up by whining in the night to let me know he needs to go outside NOW! Because I was in such a drug induced haze, he started barking in my room to wake me up. It worked. This wouldn't be so bad but he did this 3 times that night! When I got up that morning, I had the catch phrase from that commercial from years ago, "does constipation slllllooooooow yooooooou doooooown? Does diarrhea speedyouup?" running through my head. I was so dead tired after that night, and pushed myself so hard the next day, that I fell into bed dead tired the next night.

I figured that because I was so dead tired and could barely keep my eyelids up all day, I didn't need any relaxing sleep aids that night. Princess had her cousin spend the night, which usually doesn't keep me up because I sleep so soundly, but that night sleep was no where near me. I fell asleep, book in hand (I lost my page and had to search for it the next day), and should have been out for the night. I slept good for about 2 hours then popped awake and couldn't find my sleep anywhere for the rest of the night. Sure, I dozed off and on, checking the clock to see how long I had been out each time I woke back up, and got about 5 hours of sleep by my calculations and adding as much to the time as I could and still be somewhat accurate. About midnight, Princess and cousin were so noisy that I shut my door. I raised the white flag at 4 and staggered out to get a strong pot of coffee going. When I opened my door, the little dog, Widget or Midget Poo Poo Platter, fell into my room and I fell over him. How I didn't blow away without him to hold me down is a miracle. How my chastity stayed intact without him to guard it all night, I can only attribute to my chastity belt and my foresight to put it on that night. Someone could have come in through my window and threatened my chastity without him there to protect me! I shudder to think of ever having to share my bed with a person instead of a dog. (I also wonder what would happen if I ever did try to share my bed with anyone else... how would he react to that?)

I was tired as all hell yesterday and plodded through the day like a zombie. Luckily I decided to play Russian Roulette with my medicine cabinet and got a Flexeril. It was a close one. I almost got more Baclofen, or Xanax, but last night I got a bullet of Flexeril and slept like a baby with no dogs with the runs or Princesses with cousins spending the night to disturb my slumber. It was pure bliss.

What Are Ya, Stupid?!

Is stupidity contagious? Because it sure seems to be spreading around here. I think we have a good old fashioned epidemic on our hands that rivals this whole hullabaloo about the swine flu. (Ha ha! That rhymed! Move over Shakespeare!)

*I did Pilate's yesterday. Me, with all my vast knowledge about all-things-intelligent-people-know, thought it was just a stretching yoga-type thing. It is, but, like yoga, it is a lot harder than it looks. I felt like a bull in a china shop trying to do elegant poses with a body as stiff and flexible as a 2x4. Today I am sore in places I was sure there was no muscle at. Every movement kicks off pain and the thought, "I have muscles THERE?!" I foresee a lot of ibuprofen today, and maybe a little more baclofen, to get moving -- and keep moving.

*I have to admit that your comments about my lack of sleep made me feel much better. I am glad to know that I am not the only one suffering from sleep deprivation and needing sleep medicines to get a decent night's sleep. After your comments I decided that I am going to talk to my doctor about something to help me sleep. Last night I doubled up on my baclofen, but it makes me so loopy I almost peed my bed from being unable to wake up or comprehend that my bed is not an outhouse. Thanks, my fellow MSers, now I am going to do what I need to do and get something to help me sleep. Even though I still think an MSing fool with hideous fatigue during the day should not need sleeping pills (just talking about myself, because everyone knows you are not a fool).

*And in the final 3 for the title of Biggest Stupid Head Ever Shat Upon The Earth, is my ex hubby. (Sound of applause.) He said that he was so ready for me to move back in that he was thinking about coming down here, packing me up and moving me himself. When I asked him why on earth he would think I was coming back, he said, "I thought once you got your head back on you would come back." (Sound of delirious laughter.) One of the biggest reasons for our splitting up was my inability to find myself. I pulled into myself and shut myself off from everybody for... too long. Now that I am starting to "find myself" again, he is ready for me to come running back into his waiting arms. The only minor requisite to his plan for me to move back post haste is that the big dog cannot come back with me. He says he enjoys being able to walk in the yard barefoot and not have to worry about dog poop. And as big dog = big poops, and MS = me being unable to navigate uneven ground to pick up big poops, he had to do it. (Frankly, I would never pick them up anyway. They will go back into the earth in time. And watch where you walk, for big poops sake!) I am unwilling to put my dog down just so the acorn can return to the oak tree, so we are at an impasse. I'm not saying he and I will never try again, but not if I have to sacrifice my dog's life to do it. My dog has terrible seizures that are aging him horribly, so I do not foresee him living to a ripe old age. But I will NOT put him down before his time. But nice try, ball sweat (is that better than boob sweat? I think it is worse!).

And this concludes our foray into stupidity. Until next time, same Blindbeard time, same Blindbeard station.

Oxymoron

I just do not get it. I struggle to stay awake during the day, yet can't get any sleep at night unless I drug myself up, which I do do from time to time. Last night I had a hot, squeaky, hard bed that I tossed and turned in with the little dog who was pretending to be a pig, grunting and groaning and rooting for truffles in the covers. I couldn't get the temperature right. Covers on, too hot. Peeled back, too cold. I couldn't find the right combination for comfort. There were no soft spots for me to melt into like I usually do. And the more I tossed and turned the more I thought about how I needed to go get the WD40 and oil my damn squeaky bed. Of course I had to move the bed around and try to make a tune out of the hideous squeaking, which made Sugarbowl poke her head in to see what the little dog and I were doing to make the bed squeak like that. My pillows had turned into hard wedges when I could have sworn they were comfortable soft billowy clouds the night before. I think I finally drifted off between 11 and 12, but I'm not sure. I won't let myself look at the clock after a certain point because I start adding up the possible hours of sleep I would get if I slept until ______. I woke up at 4 this morning. More like my eyes popped open and there was no sleep left in me. How I slept on that hard, hot, squeaky bed with hard cement squares for pillows was a mystery to me, because obviously nothing had changed in the night. The little dog and I fought in the bed until it was game over when he decided he needed to clean his wee wee.

I push myself all day long to wear myself out. Yesterday I was so tired after my exercise class that I really, really wanted to take a nap. I was hoping to get a decent night's sleep so I made myself get up and get moving. I cleaned the house and ran a few errands, all for naught. No matter how dead tired I am, it is impossible for me to get more than 6 hours of sleep. Every once in a great while I can eke out 7, and then I feel like I should get the gold medal in the sleep competition. All the different doctors I see want me to get at least 8 hours of sleep because they say a person with MS NEEDS their sleep. My pain doctor, who I am loving because his suggestions have really helped me, even talked about sleeping meds. I pooh pooh-ed that idea because MSers are known for having the evil beast called "fatigue." I do double up on my baclofen and sometimes take flexeril to help me sleep, but I don't want to get accustomed to those higher doses/extra medicines and have them not work anymore. This morning I have been thinking that maybe he does know what he is talking about, especially as he was so right on about my other problems. I hate to take a sleeping pill but am fantasizing about a full night's sleep...

Yesterday, when I went to get a few things from the store, there was an older gentleman getting the same kind of creamer as me. Said gentleman was wearing pajamas. There was no gray area about it. They were flannel pajamas of the variety that grandma and grandpa wear on cold winter nights. He even had slippers on. We were both grabbing the exact same kind of creamer and I noticed that for all his pajama-and-slippers-wearing-to-the-store ways, he was clean and smelled like after shave. Albeit an old man after shave, but a fresh smell none the less. We both laughed at us going for the same jug of creamer and agreed that it was the best kind. He seemed to be with it, so I figured that he must have the same lack of sleep problem I do and he wears his pajamas out and about to entice sleep to come visit him. If it works, I am going to start wearing my pajamas everywhere. Goodness knows it couldn't hurt.

You Take The Good, You Take The Bad

You take them both and then you have the facts of life, the facts of life! Too bad there is no way for me to put music notes around all that, but I'm going to take a gamble and say that you all know that song as well as I do. After my recent visit at a pain management clinic, I received several ideas of ways to help my pain and several more prescriptions to add to my impressive collection of meds. I have tried both of those nuggets of wisdom and couldn't help thinking to myself, "who knew doctors knew so much?" Certainly not me.

The pain doctor told me to try wearing a satin camisole thingy under my clothes and to bed at night so nothing could rub against my skin where the MS Hug has now taken up residence. He said some people even wore it under their bra to help cut down on the discomfort of wearing a bra over that prickly hug. (Hmmm, prickly is a pretty gentle way of summing up that feeling, but the closest word I could come up with.) I was able, after dumping out all my dresser drawers, to find a pair of satin pajamas. I never wear anything remotely sexy to bed for 2 very good reasons: I don't want my little sister's ex bf/f to see me in them and I did not want to tempt my ex husband to sink his meat hooks into me any more than he already did. (After more than 9 years together one would think he would slow down a bit.) I have to say that the satin really helped me last night; it did cut down on the friction from the sheets and make me a little more comfortable. So today I am going to go tear up the town looking for a true camisole -- can't wear these pajamas in public -- to wear under my clothes.

He gave me a prescription for Flexeril to take before bedtime so that I would not wake up feeling like Gumby in a full body cast. I didn't know that there were options to my incredible stiffness in the mornings. I thought it just was. He was also concerned about me not getting enough sleep and thought this would kill 2 ugly MS birds with one stone. I find it very odd that I can't wake up during the day and yet still not get 8 hours of sleep at night. I took the Flexeril last night and woke up feeling so refreshed and flexible I had to move my body around to enjoy my range of motion. The only down side to it was that when I woke up in the middle of the night to drain my bulging bladder, I couldn't figure out which of the 3 floating toilet paper rolls were the right one. I pawed the air for a bit before landing on the real toilet paper roll. He gave me a bunch of instructions about how to take the new meds so that I wouldn't mess myself up by taking some too close together, but I can't remember what he said now. The day I saw him it was 101 degrees outside and I had sweated my body down to about 10% water, add all that to my non-existent short term memory and we're on a collision course to wackiness. He also said that he thought I should be using a cane so I wouldn't fall. I told him I would rather fall.

I have now put the finishing touches on my will because I am positive that this whole exercise thing is going to kill me. Oh, sure, I may get some benefits from it before I keel over, but I will keel over just the same. I have been avoiding a structured exercise program for so long I feel like I gave in to the dark side by agreeing to do it. To Sugarbowl I leave all my dirty smelly socks. To Princess I leave all my shoes to be worn by her mother to kick her butt with...

Boogers, Bitches, And Blindbeard's Blues

In an uneventful life, it is rare for me to have so many things going on right now. It gives me a pleasant feeling of busyness and deadlines that I inexplicably miss. For once it is pouring and I am relishing it, especially as I know it won't last.

Boogers

Yesterday when I was drying off from my shower I noticed a gigantic booger on the towel. I didn't think it was mine as my nose was not runny and I didn't see any bats in the cave when I checked my nose to be sure. I figured I must not have noticed when I dried my face, even though a booger of that size should be felt when exiting one's nose. I shook the towel and it went off into space and was forgotten by me. Later in the day, when Sugarbowl, Princess and I were coming home from shopping, I told Sugarbowl she had a bat dangling out of the cave and it reminded me of my booger issue that morning, so I shared the story. She said she had the same problem that morning. She was drying off -- with a different towel -- and a huge booger got wiped on her. She figured it must have been her's even though she had not dried her face off yet. She picked it off her body, wiped it on a kleenex and threw it away. She was furious and asked why I hadn't properly disposed of it and why I thought just launching it into space was taking care of the problem. I told her because I didn't think it was mine. We agreed that it had to be her bf/f's and Princess asked how we knew for sure, even though our process of elimination was pretty clear to us. She argued that we couldn't know without a proper investigation. Sugarbowl retorted that next time she would ask if anyone lost something in the bathroom because she found it. I laughed so hard I thought I was going to hyperventilate. The fact that the booger became her problem, that she touched it, and the idea of her trying to return it to it's rightful owner had me laughing so hard and for so long she threatened to punch me in the boob and leave me on the side of the road. She's still mad at me.


Bitches Part 1

Sugarbowl and her bf/f have decided to part ways. At first it was amicable, but when she heard that I climbed up a ladder to clean out the gutters, which I had been nagging everyone to do, and he sat on the couch watching TV (she was at work), all amicability drained away and she is furious with him to the point he can't leave soon enough. She and I were outside smoking and he was in their room. She leaned right up to the open window of their room and loudly voiced her opinion that it was bull sh*t that an able bodied person let an unable bodied person climb a ladder while said able person watched TV. Every time she thinks of it she gets mad all over again and I get the warm fuzzies that my family is so protective of me.


Bitches Part 2

Set aside the date! We are taking our old landlord to court June 22 for not returning our deposit or an itemized list of the deductions he made. We filed a claim with small claims and had it delivered by the sheriff. It was the craziest thing, the next day his wife showed up claiming that they never got served the papers, but she was there to discuss the deposit. She tried to tell Sugarbowl (I was out of town) that the oven looked like it had never been self cleaned, even though I had cleaned it numerous times. I even wipe out all the ashes and detail it with a wet cloth every time I self clean any oven. Sugarbowl had the foresight to take pictures of every part of that house when we left to show how we left it, so she asked Mrs. Landlord if she would like to see the pictures of how we really left that oven because the Mrs. was claiming that it took her forever and a LOT of scrubbing on that oven. (Even if we had left the oven dirty, how would that be $850 worth of cleaning?) She showed her the pictures and Mrs. LL left. This happened about 11:30 am. At 8:30 that night, her husband showed up with a bunch of papers in his hands and in his definition of "good faith." She had tried to tell us they were on vacation and that was why we hadn't heard from them. Their house is right behind us, just across the road, and we can see their cars and watch them come and go from our living room window. He told us he had been working 12-14 hour days -- not much of a vacation -- had to cash in some cds and had been too busy to get back to us, is that a crime? Sugarbowl, with me on the phone with her to witness the conversation, told him that yes, it is in fact a crime. He lost his temper and told her that we were pigs, the whole town knew it (the whole town doesn't even know us and who would care anyway?) and we are just "low life renters." I don't care what he says about me, but I am offended that he would say that about renters when his income is from these low life's money. I have printed all the laws that he violated, a copy of the lease, which has some plainly stated violations of the law (I did not know they were violations until later), and we have been keeping track of all our dealings with these people. I can't wait to take this bastard to court and only regret that I can't tell him in court to go suck his wife's d*ck and I hope she fists his ass and reams him out so bad he can't sit for a month.


Blindbeard's Blues

In the same week we are taking our %^& of an ex landlord to court, I have several doctors appointments. I am going to a pain clinic (YEE HAW!) to see if there are better ways and better drugs to help me get my pain under control. (Pain has such a way of draining any fun out of life.) I also am starting the process of the balance study I agreed to do (BOOOO!). I have to do a bunch of tests to chart my balance and then get to start working out 2-3 times a week (sob). I have been avoiding a structured exercise program for so long I feel like I have crossed over to the dark side by agreeing to do this. But I know that I need to do it, so I sucked it up and bought exercise shoes -- damn it! But I am going to wear my bobby socks with monkey heads for pom poms because I'm such a rebel.
(You'll never take me alive -- or with any dignity left in me -- coppers!)

Me And My Tysabri

(Sung in the tune of "Me And My Llama" from Sesame Street.) This post is in response to Kimberly's comment about wishing to talk to me about Tysabri. Sorry, Kimberly, I can't figure out how to highlight your name to direct peeps to your blog because I am not very technologically smart -- what a glaring understatement that is! So, without further ado -- even though ado is so much fun to further -- here is my experience/thoughts on Tysabri.


Little Background

I started Tysabri almost 2.5 years ago, on my youngest nephew's birthday, after a long and arduous process of me jumping through flaming hoops, going through many long doctors' assessments, and signing my life away -- as if anyone would want my life! I have been on, in chronological order, Avonex, Copaxone, and Novantrone, with unsatisfactory results, some my dissatisfaction and some my neurologist's. I hated Avonex because it made me more tired, sick as hell, and even more depressed, which I had not thought possible. I hated that shot that hurt like a mother trucker and was glad when my neurologist said we needed to change meds because it was not doing a thing for me. Me, in my newly diagnosed state of not knowing much about anything MS or MS meds, thought that you had to be on it for a while to let it "build up in your system" before it would start working. In the 6 months that I was on Avonex I had at least 2 attacks. So we ditched Avonex (YEA! Horns tooting, confetti raining down...) and I went on Copaxone. I loved Copaxone because there was no sickness, no added depression or fatigue with it, and I could shoot up in my own home (my mom did my Avonex shots). The only side effect I had was itchy injection sites; they itch like a mosquito bite. And once I got too close to the muscle and that hurt like HELL! I was on Copaxone for 1.5 years and would still be on it if it would only work with me and reduce my attacks more. When I first switched I went the longest I had ever gone without an attack: 5 months. While on Copaxone I did Novantrone and found that I hate Novantrone as much as I hate Avonex (for different reasons) and the steroids combined. I was SICK SICK SICK for 5 days, stuck in my house for 2 weeks (couldn't risk getting any germs from anyone), and didn't lose a hair -- I was sooooo ready to lose this ratty nest on my head and rock a bald head or even a mullet wig worn sideways, that would have been so cool! So after all this my neurologist decided I needed to go on Tysabri and I concurred, having read up about it and deciding it sounded good.


My Brain On Tysabri

Camera pans to a perfectly cooked egg, because I do not feel fried, at least not from Tysabri. After 2 weeks free from any DMD, I started Tysabri. At first I did it once a month, but I would get what I call The Burn around the 3rd week. I would start getting a kicking up of my old MS symptoms and start feeling that fatigue that makes it impossible for me to be off the couch for too long. All the aches and pains would flare up and sometimes my little sister had to drive me to my infusion because I hurt too bad to drive myself safely. Now, before anyone gets up in arms and wants to brow beat me with a large book about MS, I did a lot of research about this and it is acceptable to do Tysabri every 3 weeks. I even did my research with a very painful razor cut in my arm pit, yet I pushed on anyway -- I'm a real trooper. Even though I have only been doing Tysabri a little over 2 years, I have had over 30 infusions, I can't do the math to give you the exact number so I may be underestimating the amount of times I have done it. I feel the best I have felt since MS barged into my life. In fact, I feel so good I sometimes forget what it felt like when I was on other DMDs and start thinking I could go off it because I'm obviously better -- the same thing I thought about my antidepressants and went off them years ago, only to have a "Major Depressive Episode" and realize why one stays on their meds even though they are feeling better. The only issues I have with Tysabri is that I have to drive downtown every 3 weeks, because I'm a whiny baby, and it takes them forever to get the whole party started. I'm an impatient person by nature and it takes 1 hour for the infusion and 1 hour of observation after (most adverse effects from Tysabri manifest within 2 hours of the starting of infusion). I get so impatient with sitting there for 2 hours I start to tap my fingernails and rock violently in the rocking armchairs they have in the infusion center. I understand that they have to order the medicine once I get there so that it doesn't get wasted, but I hate that it draws out the time I have to be there. I swear the pharmacy takes their sweet ass time mixing up the potion, then lollagags their way up to the infusion center, stopping to talk to everyone on their way. Because I have done Tysabri so many times, I only have to be detained for 45 minutes after the infusion, and I watch the clock to make sure I am not there 1 minute longer than I need to be. Sometimes I want to squeeze the bag to make it go faster, but the nurse told me that the reason it has to be so slow is because the medicine is toxic to the veins and has to be introduced slowly. I still don't care and would like to introduce the medicine faster and get the awkward first meeting over with quickly. (Tysabri, meet veins. Veins, this is my good friend Tysabri.)

I know there is a risk of PML with Tysabri, but I don't care (it is such a small risk anyway). I would rather get PML than go back to my rapidly deteriorating state before Tysabri. My neurologist told me, after I started Tysabri and something finally slowed my galloping MS, that he thought I would go SPMS within 2-3 years if we didn't find something to slow it down. Those are words to strike fear into the very core of me. I don't fear PML, but I do fear the idea of not being able to take care of myself.

Even though Tysabri has the highest rate of reduction for relapses, it is still not 100%. I still have a declining baseline and little nicks and gouges taken out of me, but (knock on wood) it is better than it was. My current neuro said that if I start not benefiting from Tysabri the way I was, then I will go off of it for awhile and start it again. Not sure what the current research says about that, but I am going to take her opinion on it. It scares me to think of going off of it because I do not want to go back to a raging case of MS, attacks almost constantly, only a few months reprieve between and never returning to my original baseline. No, thank you, but it was so kind of you to offer!

All in all, I feel better than I have since this disease moved in with me and would recommend Tysabri to anyone who has the option to do it. I can't think of any side effects -- not saying there are none, just that I do not have any that I am aware of besides my extreme impatience with having to sit there for too long, wondering if the friggin pharmacy people all fell into comas and no one seems to care except me. It has helped me tremendously and I hope it helps others as much.


Okay, I am done. Now I am off to Wal Mart to get a loaf of bread, stick of buttah, quart of milk and some lawn mower oil -- it's getting low.

I Gots The MS Blues

I have about a million and one things to do and am hampered by my MS -- very annoying. We are almost done getting all of our CRAP out of the old house and into the new house. We already moved the heavy/big stuff -- maybe I shouldn't say "we" because I just cheered from the sidelines while everyone else moved it ("Move it out! Push it out! All out! GOOOO TEAM!" Ahh, MS, who said there are no benefits to having you... oh, that's right, it was me.) -- so we only have all the little stuff to move. Beings as everyone else has paying jobs to do, as opposed to my non-paying job, I get to move all that piddly little stuff, with Princess' unwilling help, of course. I told her that I would give her some of the money I will get back from our deposit or she could help for free, it is her choice, but one way or another she is going to be helping me this weekend. She chose the money.

I do as much as I can until I start feeling weak and shaky, then I know I need to take a break or risk seriously hurting myself. Not that that stops me and I have the bruises to prove it. Trying to move a full length mirror yesterday, I hit the edge on the ground and it mashed my hand, my good hand that is not numb. I wanted to let loose a volley of naughty words like "boogers," or "guts," or even "mother trucker!" But the neighbor was out in his yard with his young daughter so I just hissed as quietly as possible, which is not very. Putting some books on the shelf, I dropped a board from the third shelf onto my foot, my good foot of course. It has a huge bruise, my foot is swollen up, and I can barely walk on it. But I have no time to be going in for an X-ray to see if I cracked a bone; it is just going to have to wait until Monday, then I will see if I need to haul my arse to the ER.

I'm stressing about getting the old house cleaned up, unpacking the new house, finding my bed in the heap of boxes in my room, and every one's lack of concern about all of this. I called my neurologist to tell her about my numb right thumb and wrist, just so she could chart it, not because I am dying to see her again. Her nurse called me back and said they wanted me to pee in another cup, and give another blood sample to see what is going on. I told her I know what is going on, its called MS! Whew! Glad we figured that out so I can save myself the long wait in the lab when there are better things I could be doing instead of running the labs and saying, "Yep, it's MS" when we all know that. I was supposed to get those labs done either Thursday or Friday, but I decided I don't want to. I am going to see how my foot is on Monday and then will multi-task if need be and get it all done at once. My little sister, when I was telling her what they said, asked me if I really said that (in a very insulting shocked tone). She said that they probably love having me as a patient. I don't care if they love me because I suspect they only love my private insurance. All this lip from the woman who called our ISP to see when our Internet would be up and running in this house, ripping into them and demanding they tell us when we could expect it by because they keep giving us time frames and not doing it. That wouldn't be so bad -- it got results -- but she was doing this in my name because the bill is under my name and she knows the last four of my social security number -- damn her good memory! It was my turn to be mortified and I asked her if in the future she could not be a bitch when posing as me, that is my job and I guard that luxury jealously.

I have a full weekend ahead of me. A weekend jam packed with moving and cleaning with only Princess to help me. Ritalin, you and I are going to be BFFs all weekend long.

Hey, Guys, Are You Stiff?

Because I am, and I'm not even a man. But why quibble about little details? I am too tired, stiff, sore and bruised (I think I now have bruises on my bruises) to be argumentative. After 2 days of moving and still more moving looming over our heads, we are all dead tired and completely wiped out. I am probably the best off because MS hinders my ability to do as much as everyone else, which makes me feel guilty to be the weakest link. I have been eating ibuprofen and Ritalin like candy just to keep upright and do what I can to help out. I am so ridiculously stiff I have been pondering taking more Baclofen so that I can bend somewhat normally -- for an MSer that is. I can't remember which commenters said that Neurotin makes them loopy (forgive my lack of memory, Father, for I have cognitive problems) but taking even slightly more Baclofen than what I am now accustomed to makes me loopy. I don't know if I can stress the loopy enough, but here goes:

Sugarbowl: Where did the frying pan go?

Blindbeard: Get these garden tools out of the bathroom, they take up too much room.

My Mom: Does the little dog always sleep in bed with you?

Blindbeard: I'll take the New York strip, well done with a baked potato with butter and sour cream, please. No eggs, I don't like eggs.

Princess: Can you move over so I can share the couch with you?

Blindbeard: You'll have to put gas in the tank if you take my car.

Princess: But I can't drive!

Blindbeard: Then make sure you scrub the tub extra good.

Older Sister: Do you mind if I come use your Internet while we are waiting for Internet at our new house?

Blindbeard: Sure, but we don't get all the movie channels.

And so on. In fact, I'm pretty sure those conversations are a direct transcript of what was really said. I could really use the extra Baclofen right now, but I'm not sure I want to descend into Wonderland because I am no Alice.

Found

Sadly, I did not find Braincheese's memory (http://brain-cheese.blogspot.com/2009/03/lost-and-found.html). I found something I had forgotten I had: bones. My first year after being diagnosed, I did the steroids 4 times in about 10 months and gained about 55 lbs. 55 lbs! That's even more insane than me! Luckily (??) I was "underweight" to begin with, so the weight gain did not cause any concern amongst the learned, even though I was concerned. I've always been thin; I have a smaller frame so weight does not stack up on me in an attractive way. Being almost 5' 10" barefoot, I can hide some weight better than my shorter comrades, but I can't hide an extra 55 lbs any better than anyone else. My face became a perfect circle and I lost my cheekbones for so long, I forgot what having cheekbones even looked like. I was not used to having such a big hind end, and tried not to look at my butt as much as possible -- it only stressed me out to think that people could walk behind me and see that jiggling around like I was smuggling cottage cheese in my pants. If I am going to smuggle anything in my pants, I would choose something better than cottage cheese, like peanut butter, or Reese's Pieces -- mmmmm! Before I get lost in contemplation of all things peanut-buttery and race into the kitchen to pillage our supply of peanut butter, I better get back to the subject at hand. (Peanut Butter, you and I have a hot date later today.)

I had actually given up on the idea of losing any weight and had accepted myself heavier. After being "too thin" for most of my adult life, I was enjoying having some curves -- not all of them, mind you. But because my butt was behind me (no pun intended), I was able to forget about it and enjoy the rest of having some meat on my bones, especially after I dropped about 15 lbs. I am now about 10 lbs heavier than I was before I did the steroids and, to be totally honest, I liked my body better about 15 lbs ago -- something my mom cannot wrap her head around. I don't want to say she has an eating disorder, but she is really weird about her weight. She grew up in an extremely dysfunctional home and if they gained any weight at all it was an occasion to make fun of them, so she has issues about 3 fat cells grouped up together on any part of her body -- a problem her daughters do not have.

I started dropping the weight after my antidepressants were switched to non-appetite stimulating drugs. Then my anti-fatigue meds jumped in to help suppress my urge to grab the funnel and empty the contents of the kitchen down my throat. Lastly, the MS Hug makes it painful to have too full of a stomach, so I have to nibble throughout the day instead of eating large quantities of anything, so the weight just keeps dropping off. Yeah, it's nice to have my cheekbones back, but there is a definite down side to having bones again. I fell up the stairs the other day and got bruises in places I didn't know could bruise. When I was fatter, my fat cells cushioned my falls and I didn't get as many bruises. Now I am more bruise than woman. It's hard to get comfortable when you have to shift around to find a place that isn't too sore for you to lay on. It's starting to get warmer and I may have to show off my bruised bird legs in shorts because I can't take the heat and shorts keep me cooler. And, to top it all off, none of my clothes fit well anymore and I'm too poor to afford any new ones, so I walk around with saggy bottomed jeans that make me look like I need a diaper change.

I never had much of a sweet tooth and getting back to my old self, thanks to med changes, has killed any desire for sweets, so I can't eat a bunch of candy to make my clothes fit better and get my body back to where I liked it best. And I can't eat more because the diabolical MS Hug won't let me fill up my guts without causing me an illegal amount of pain. Guess I'll just have to get used to saggy butted jeans and stay away from the Depends aisle in stores lest someone think I need help changing myself.