Tecfidera; Notes From The Lobster Pot

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

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

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

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

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

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

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

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

The Slow Blink

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

The Lost My Patience

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

The F*ck Stick

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

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

Guide For The Newly Diagnosed: The Answer

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

THE ANSWER

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

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

Things I Have Learned From Courtney Stodden

I have enjoyed Courtney Stodden for quite some time now. It started with an interview where she writhed around on a couch like she was on the verge of a heaving orgasm. That might have been the end of it, but she was a very determined young woman who went to a pumpkin patch to reenact the Kama Sutra with her sugar daddy for all the kids to see. Unfortunately, all the women were too jealous of how much their husbands were liking it, complained that she was too "sexy", and she was tossed out of there. The problem is that ever since she broke up with Doug, she has become a predictable bore. It has gotten so bad and soooo predictable that now she and I are going to have to break up. I am working on my "Dear John" letter, but until I am finished, here are a few things I have learned from Courtney.

No matter how bad things are, I have never been a mustache for a Santa suit wearing Doug Hutchison. Even on my worst days, it is a comfort to know that Doug's beady eyes have never looked out at the world from between my legs. Especially during a photo shoot that I was trying REALLY hard to be sexy at. Nothing ruins sexy like trying to pull away from creepy grasping Santa who wants to wear you as a too tanned mustache. Knowing that I never have been and never will be Santa Doug's mustache, well, that is something to write home about right there, folks.

"Dear Mom and Dad, 

I got poison ivy on my butt from pooping in the woods but the camp counselor says I will be okay if I don't scratch it. It is really scratchy though!!! I got bit by a spider on my eye lid and it swelled so bad I couldn't see a thing and kept tripping over everything, I even fell in the shower and got a bar of soap stuck in my nose, now one nose hole is a LOT bigger than the other. But it's still not as bad as having Doug Hutchison's red beady eyes peering out of my crotch while he's dressed as Santa. HA HA HA!!!!

Love and kisses

BB"

Put words like "expressing yourself" and "not hurting anyone" together -- along with like statements--  and it will sound like you are deep and smart and stuff, regardless of whether you live by such high flown words yourself. For example, Courtney's recent response to whether she considered herself to be a feminist and her response of, and I'm paraphrasing here, "yes!!!!1!! to me it's dressing how you want, expressing yourself, as long as you are not hurting anyone and supporting other women!" And people acted like that should be Feminism 101. 

Alex: "We're going to start this round off with 'Knowledge So Common, Even Your Dog Knows It' for $100. 'Dressing and acting in such a blatantly sexual manner to attract as much male attention as possible regardless of theirs or your relationship status, even to the point of ostracizing other women.' Yes, Blindbeard."

Blindbeard: "What is Feminism." 

Alex: "Good job guessing the obvious."

And finally, for today, it's not for publicity/fame/attention as long as you can keep coming up with excuses to be noticed. Divorce is very painful, no question about that one. Even when it truly is mutual, it can throw you for a serious loop. My divorce was truly mutual; he bought me furniture when I moved out and even now if I needed help he would do it, even though sometimes we really hate each other, we do get along for the most part. Granted, I'm not a known "personality" so nobody was interested in my story, but I still don't think I would have tweeted 3 times about my exclusive-tell-all-what-went-wrong interview. There is something rather... gross? Distasteful? Insincere? Really inconsiderate to Doug? Publicity-seeking-seeming? Attention-whoring-feeling-giving? And to tweet about your new crush when your ex is choking up during his interview done on the same day isn't that a bit... rude? Cold? Selfish? Insensitive? And to release to the public a separation agreement that lays out the sleeping arrangements is so stupid and unnecessary and attention whoring it should make the person who did it writhe in embarrassment. But it is not for publicity! It is an important document that the public really needed to see, because how were you supposed to get any sleep not knowing how Doug and Courtney were handling their sleeping arrangements? I know I'm sleeping better because of it, and I'm going to go tweet that a few times to prove it.

Things I'm Tired Of

In order

1. Cluster Headaches

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

2. My Ex

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

3. Grocery Shopping/Being Mother Hubbard

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

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

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

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

Unforgivable

I'm a pretty forgiving person in general. I don't have too many things that are absolute deal breakers, there are a few, but not many, and even then with the right apologies etc. they can usually be worked out. This morning I ran into a total nonnegotiable. At 3 am almost to the minute, I was woken up by my cluster headache. This is the usual time so I just glance at my clock to make sure we are on schedule and to track the starting time so I know when to expect the end time, then play the waiting game. I recently started new meds so the severity of my attacks has really come down, so much so that I can play games as I wait out the 2 to 2.5 hours until the hot sledgehammer is done hitting me on the left side of my face/head. Sometimes, just to shake things up, instead of the hot sledgehammer to the side of my face, the cluster will take a pvc pipe and try to force it into my eye socket with the sledgehammer. It likes sledgehammers because they can really get some force behind them and they cause more widespread pain. But the cluster headache wasn't the problem, nor was the fire that was burning in my legs, thanks to my MS that wanted to remind me that it was still there in case I forgot, because when clusters are in town, I don't notice anything else. A pack of wild rabid possums could be gnawing off my leg and I wouldn't know it if I was having a cluster headache at the same time. But worst of all, stuck in my head was that Popo Zao (or however you spell it) song that Kevin Federline did. What in the name of tarnation was that song doing in my head, actually, just that one line, "let me see that popo zao." When was the last time you even thought of that song, or remembered that he did it? I can't remember the last time I thought about him, or the fact that he wanted to be a rapper and tried by making that one song that I think I listened to maybe twice on gossip sites years ago. I tried to think of every catchy song I could. Every song that when I think of it, it is stuck on repeat in my head for the rest of the day, all to no avail, even now that one line keeps popping up. I'm so ashamed. I'm ashamed that somewhere in a wrinkle of my brain, I stored a line of that song for years and it popped up to keep me company at 3 am along with my burning eye and legs. Why couldn't my MS attack that area of my brain? It's probably too busy destroying all my happy childhood memories to worry about silly things like useless snippets of obscure songs. It's unforgivable. 

I'm bored stiff with MS, literally and figuratively, so I am going to start writing about other subjects that are of interest to me or going on in my little world. I just wanted to give the heads up so no one is surprised if they come to a MS blog and read about how my dog threw up under my bed, ate it, threw up again, and then I threw up. These are things that are so exciting that I could not possibly keep them to myself. Now I got to go get into the shower because if I get into the shower just before Princess's alarm starts going off, she will get out of bed faster than she ever has to come galloping in to make sure I don't use all the hot water, how long am I going to take, why couldn't I wait, etc. etc. and that is just too much fun for me to resist. 

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.