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?!

Cast Of Characters

A comment I recently got started the crusty wheels in my head a' turning:

"... I feel like I know you and your family (sugar bowl, princess etc.) Sort of like a familiar tv series that you get to know all the players."

That made me think that maybe I should give a more formal rundown of the main cast to this R rated drama that is my life. (Once upon a time I would have called it X rated, but things have really changed for me.) Princess is going to give her input here too, to help balance (?) it out. Youngest to oldest we are:

Jabber

Blindbeard says: He in an 8 year old ADHHHHHHD kid whose tongue is hung in the middle and flaps at both ends. There are only 2 thoughts rattling around in his head: boogers and video games, namely Mario and Luigi. His hair is a red/orange, more orange then red, so we also call him Pumpkin Top, like if he hits his head we tell him to be careful not to spill his pumpkin seeds, or to start using his pumpkin seeds to form a thought that doesn't involve boogers and video games, or, being a boy, his penis. You don't want his hands to touch your face or, God forbid!, get in your mouth because you run a VERY high risk of getting raging Shigella. But he is also a very creative kid who can entertain himself for hours with the simplest of things, like a pair of earmuffs and a bungee cord will keep him occupied for hours. Who knew that bungee cords and earmuffs could have such great conversations? I wouldn't have thought they would have much in common.

Princess says: He is an annoying 8 year old boy who is addicted to video games but only the video games we have here. He has to take his DS every where and loses his games, and sadly, we bought him more for Christmas. Sorry, I was asleep when you asked me and I had a dream you were drawing a cow that looked like a sink.

Princess

Blindbeard says: She is an 11 year old know-it-all who is highly intelligent and can be a good companion but hates shopping to the point that it drives me crazy to take her with me. She is worried someone might see her naked body and goes to great lengths to make sure no one does. She is one stubborn mule and will dig in her heels and not back down no matter what the consequences may be for doing so. She doesn't think her mother and I are funny when we know we are damn funny. She is breathing down my neck right now and is watching every word I type and correcting me about everything.

Princess says: I'm the best person ever! Don't put that! I don't think that! It makes me sound conceited. You know, I am going to go in and delete all this! I hate you.

Sugarbowl

Blindbeard says: That woman and I are either getting along great or at loggerheads about something or everything, depending on the day and whether she took her meds or not. She is very creative and she and I can play off each others wit and amuse ourselves for too long. She talks too loud, due to ear problems as a child, and will blast everyone out of the bleachers at Princess's basketball games, no matter how many times I try to shush her. Her car is a mobile dump that drives me insane to have to ride in it, so we take my car so she doesn't have to hear me bitch about what a disgusting mess her car is. She likes stupid pets and I have to pull out my bossy big sister to keep her from starting a petting zoo in her room. She is allergic to cleaning and one tired lazy slob, but I still loves her.

Princess says: I say nothing about her.

Blindbeard

Blindbeard says: I know I have a lot of faults. I am a clean, organized person by nature and living with slobs can make me very hard to live with at times. I do not share well, what's mine is mine and I will not share with you. I tend to not have a lot of empathy for others, and do not care what anyone thinks about me, only what I think about them. I have certain things that I do not like anyone else to touch, like my favorite pen. One time Sugarbowl took it to work because she couldn't find any other pens. She didn't tell me until she got back home because she knew I would pop a vein in my head if I knew. I now hide that pen better. I change the words to songs all the time, to suit my mood and what is happening around me. I am very literal and will miss a lot of things that are not meant to be taken literally, or it takes me awhile to figure it all out. I read boring books that no one else can understand why I would read, but I am an historical non fiction addict who can only go so long without my fix.

Princess says: You are a great big glob of greasy grimy gopher guts; smell so bad it drives me nuts. You like to go shopping way way way too much. You can be fun and funny when you want to, other times you are an ass hole (she actually said that! And told me I could write that!). You steal my animals, even though I recovered one. The other I will never recover (her dog). You yell at me to get ready even though you have nothing else to do. You talk constantly; you have diarrhea of the mouth (HYPOCRITE!). You think the couch is yours even though you DIDN'T EVEN HELP MOVE IT INTO THE HOUSE! (The couch is mine, for the record.) You read dumb books. You get up at the crack of dawn.

BB: Don't you have anything decent to say about me?
P: I don't think I do. But you can be my best friend at times.

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.

This Whole Safe Haven Thing

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

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

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

Defining Moments

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

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

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

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

Down Grade

*Update: The reptile show was middling at best, but snakes and spiders and frogs (oh my!) don't do a lot for me one way or the other. My little sister loves the idea of a tattoo of a snack cake or something sugary, she is only concerned that she may lick it if it looks too delicious. We called her Sugar Bowl growing up so I thought she should get a sugar bowl tattoo. While I am not in as much pain, I am still totally wiped out, more so than usual, and look forward to the weekend being over and having the house to myself again. Tired of people trying to share the couch with me.


The knife in my back has been down graded from a steak knife to a butter knife, which is great news for me! I'm starting to feel more alive than dead and am thinking about getting back to life. I still am coughing like I have the black lung, but it is getting better -- it hasn't made me throw up again. Still short of breath so I huff and puff at the slightest thing; not exactly the huffing and puffing most people want more of in their lives. And still tired and lazy, but not as much. I may get dressed and leave the couch today. Maybe. This house needs some TLC and as much as my roomies have been wonderful, they just can't seem to see the huge laundry pile, only grabbing what they need for the day and washing that; or the dust that is dimming the tv screen, they keep watching through the dust; or the dishes stacked to the ceiling, only loading the dishwasher when we are out of everything and there is no alternative. But as I am working on having a better attitude in my daily life, I have only thanked them for what they have done and not pointed out the things not done. Here is a quick rundown of all the thrilling things that have been going on with me:

My little sister wants to go to a reptile show today. She has a passion for frogs and chameleons that surpasses her love of snack cakes, and that is saying something. She has a frog tattoo but not a Hostess tattoo. I don't want to give her any ideas because she would probably get some donuts or cupcakes tattooed on her. I don't have much of a sweet tooth except for "When Steroids Attack" and I eat my way through the entire kitchen looking for sweets.

I had to put off my Tysabri until next Friday because of the black lung so I will probably be a mess by then. Even a week past my usual schedule and I start to feel the burn. My MS symptoms kick up and kick my round behind. I start getting achy legs again, my vision worsens (who knew that was possible?!), I get that odd sensation in my legs and right arm where hot is cold and cold it hot -- a strange and disconcerting (to say the very least) feeling, I stumble and lose my balance more, my leg drags more than usual, the overwhelming fatigue that makes the couch my BFF, you know, all the fabulous things that MS does to a body. But as I wasn't sure that I wanted to go into that good night just yet, I felt I should probably put it off. And my doctors concurred and made the decision for me so even if I had wanted to go forward with Tysabri I couldn't have.

I don't want to add to any one's burden of sorrow right now, but I have to mention this. My favorite jeans died just before I got sick. I will wear my jeans ripped to shreds and actually enjoy old worn out jeans, but these went to a place that was beyond saving: the ass ripped out. I will gladly wear jeans with tears and holes everywhere but there. As I am not really into patches and sewing them was out of the question, I had to give them a proper burial in the garbage can. The horror of losing your favorite jeans is something everyone can relate to. I can't find a decent pair to take their place and it may be some time before I find a new favorite pair. R.I.P. jeans. You served me well and I look forward to wearing you in the afterlife.

I've been skulking around your blogs and it seems everyone is a little depressed right now. Is it the change in weather? A rough patch in the already-rough-road of MS? A plague of sadness sweeping the nation? I'm sorry everyone is feeling so down and I hope it doesn't attack me. The only good thing about being depressed is how good it feels to start feeling better.

Okay, I am being dragged to a reptile show so I hope everyone starts feeling better and if nothing else think of a good snack cake tattoo for my little sister. Love ya! BB

Quick Note

*Update: I forgot to mention that the reason my little sister is holding on to me is because I am sitting on the very edge of that bench, almost falling off. That picture was taken at my Grandmother's 90th birthday party, 2 years ago, which is why I am wearing Uggs. Except for the moon face, I look pretty much the same. I keep meaning to get a more recent picture of myself but never seem to be ready for picture day.

I should have said this before but I am the one with a hat on, in black in the picture. I thought the stiff way I am sitting and looking so uncomfortable would give it away. I had just done the steroids about a month before that picture, so I still have the "moon face" from them, but I don't have too many recent pictures that wouldn't sizzle the hair off your heads if I posted them. I have had this strange body dismorphia almost from the very beginning of my MS. I have a hard time getting my body in the "right" position anymore. I can't figure out how I used to sit and it drives me crazy because I end up looking like I sat on a poker. The other one is my little sister and she hates that picture -- she says we look like lovers, not sisters. But this is my blog not her's.

Origin Of The Name "Blindbeard"

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Before I Forget...

I have to get these 2 things down here before I forget again. First I want you to know that I enjoy your comments too much. I don't always respond but I almost always laugh. I don't know how many times I have cackled in this room by myself over some of the stuff you think up. Sometimes I take my laptop with me and make a fool of myself in public snorting and guffawing by myself to some of them. And if you have ever heard me laugh you know it is not a quiet thing -- especially when I am really amused. An old roommate used to say it sounded like I was hyperventilating and I wish I could refute that. Second I have finally found the WD40 and a prying bar and got myself over to a lot of the other MS blogs that my lazy self has been meaning to for awhile. I found a recent question on the Carnival Of MS Bloggers at http://brassandivory.blogspot.com to be very thought provoking. The lovely and multi-talented Lisa that runs that blog (not sure if she came up with the question or not. My vision is "spotty" right now so I can't always read every word -- bless all holy buttons for spell checker!) asked what you would do if you were not afraid. What wouldn't I do?! I would scratch the inside of my nose in public if need be. I would tell some one with cat box breath to eat a friggin tic tac. I would meet the eyes of people in public and not worry about the reasons for why they are looking at me. I would skip (or try, can't really skip these days) and sing, "Weeeeeeeee're off to see the Wizard, the wonderful Wizard of Oz!" through the stores. I would contact some people from my past and tell them what they meant/mean to me and not be afraid of their reaction. Oh, the things I could do if only I didn't have that nagging fear that screeches in my head, "Their all gonna laugh at you!" like the line from the Carrie movie. Oh well, it is rather late in the day to start working on all of this. I will think of it tomorrow. (I loves me some Gone With The Wind. Trying to talk Princess into being Scarlett O'Hara for Halloween but she wants to be a boring old witch.)

On My Mind

Update II: My readers are the smartest, most informed readers EVER! Your comments made me feel much better while showing me how little research I did on this subject. I was really upset that 2 new cases of PML happened that I don't think I took the time to look into it all, as I should have done. But thank goodness you had the calmness of nerves and clarity of mind to do your homework. All I can say is, bless your buttons!


Update: The whole infusion center was buzzing with this subject and the general consensus was exactly as the comment says on here. The most interesting part of all this was how many different ways people say Tysabri. Tie-sob-reee, Tay-sab-reee and so on, everyone sticking to their own favorite way of saying it regardless of how the other person in the conversation was saying it.


I have so many things I could talk about (as always) but right now I have to get this off my mind so I can move on. I was reading on the NMSS website that there have been 2 new cases of PML in people doing Tysabri. In Europe 2 men who had each been on Tysabri for over a year started having major neurological problems that were not consistent with MS. *Sigh* I had hopes that there would never be another problem with Tysabri and that I would spend the rest of my life happily on it; but now I feel like Tysabri is an endangered species. The men went through a process, which I can't remember the name for right now, to get all the Tysabri out of their systems and did a bout of steroids to try to lessen the attack. They had areas of major damage in their brains consistent with PML, and there is no known medicine to help combat PML. For a little while there, when it looked like Tysabri only brought about PML with the help of another immunosuppressent, the odds of getting PML became very small. Now they are back to about 1 in 1000. That doesn't worry me. I would rather get PML than not be on Tysabri, but I am afraid I may not have that choice. I am off to do Tysabri today, (damn the torpedoes!) and take my chances. In the words of Emily Bronte, "No coward soul is mine."

*Side Note*

Browsing through my comments, I could not ignore the first anonymous comment on my last post. Normally I never pay attention to others' negative opinions (I know my humor and point of view are not every one's cup of tea) but I am thick skinned and I don't want anyone to read that comment and feel bad about themselves because of it. Our healing processes are as varied as this disease is. That commenter has had MS for longer than I have been alive, and if, god(s) willing, I live with MS for that long I hope I will (never) give such sage advice. I respect every one's right to have an opinion. I respect every one's right to heal in their own way in their own time. I also respect my own right to keep to myself what I do for others and in what ways, if any, I give back -- I have a bad reputation to uphold here. One of the most damaging things for me after being diagnosed was such misguided advice as that comment was. It made me feel even worse that I hadn't come to terms with MS yet. Never let anyone ever for ever and ever and never for ever tell you how you should feel EVER. Let nature take its course and don't force what is unnatural. And if you get any detrimental advice, advise them to stick their advice... on their pillow so they can cuddle with it all night; I have found that a great place to store unsolicited advice. I am going to assume they meant well (they caught me in a good mood -- there was no diet ice cream left, only regular. "Oh darn! Guess I'll have to eat it anyway!") but adding guilt to this disease is making the burden too much. I had a stay in the loony bin and the scars on my wrists to prove it... but that will be my next post. Until then may your freezers overflow with full fat and calories (which we all know means full flavor) ice cream and keep healing in your own way. XOXO Blindbeard

You Might Be Glad To Know...

I set up this whole blog so anyone can comment or look around and remain anonymous. Not that I had much choice, it was a yes or no question and I didn't want to limit myself to only people who have an account on here. I have a little counter thing that keeps track of hits, like myspace does, and even gives me some fancy pie graphs that come in your choice of colors, but those are not too damning for anyone. I hate sites that track people or make you have an account to do anything. I also hate cherry flavored anything. And malted milk candies. OK, I'm done.

*Author's note: I hate caterpillars too, and lotions that smell like food, and itchy clothes, but that is all.

*Author's note II: and people who talk loudly in the library, uncomfortable bras, and tight jeans. I'm done now.

Under Construction

I would have liked to put "Men At Work" as the title because it conjures up much more pleasant thoughts than "under construction", especially as I have a splitting headache and am waiting for the ibuprofen to kick in. I am starting my own MS blog for the sole reason that I need a place where I can talk about my MS without wondering if I am boring others and also because I have a lot to say--guess that is two reasons, oh well. So by naming it an MS blog one knows that it is about MS. I blog like a mad woman on my myspace page, but try not to talk about MS too much; I needed an outlet for all things MS-like in my world. Also, as usual I welcome all thoughts, comments and such, on anything, not just MS. I am going to try to put this page together as quickly as I can so I can continue on my quest to say everything I need to say before I die--its going to be a close race.