Picture
I just so happen to be dating a guy who was an aviation major, so last year when the Red Bull Air Races came to Detroit we went for the whole weekend and had an absolutely rad time. They are coming back this year, and will be on the Windsor side, however I got an email from someone at the MS Society today, that they are having a charity tent there with a hospitality package.

So if you're in Michigan, come to the Air Races and help support the MS society all at the same time. Tickets are $150/person but that includes food and drink and $85 dollars of that is tax deductible.

I've already snatched a few tickets up. Hope to see you there!

Fore more info, go here

http://main.nationalmssociety.org/site/Calendar/1158657598?view=Detail&id=186246
 
 
Picture
So my ass has been totally acting up again. The dr. told me to go a month with the Fibersure thing and see how it went. Well it was going pretty well, so I didn't go to my follow up appointment. And being the silly bitch that fate is, wouldn't you know that same day I starting having some mayja issues. So since then its been a real rockin' good time trying to have a normal bowel movement.

Today was no exception. Last night I was all gurgly but it was doable, this morning when I stood up to get out of bed it felt like I was seriously going to shit myself. So after about 3 separate attempts to poop with what felt and looked like ass vomit,  I finally had to try to go to work. I however, was terrified to leave the house because I was afraid I'd have one of those sudden, must poop moments, and then have to shit all over the seat in my car. So I was running late to work because of this, I get here and again the second I get out of the car, I have to poop. Bad.

So I walk to work literally having an inner monologue with myself. It went something like this, "ok ass, I'm tired of your shit (giggle to myself on an unexpected pun), lets get to work and have a normal day. deep breaths. get there. for the love of god please do not poop your pants".

I didn't poop my pants. but I did decide that I'm extra super tired of this crap, or lack there of. Its getting way worse, more frequent and more painful. So I'm gonna try the Milk of Magnesium for fun. See how miserable that makes me. And if I don't' feel any better, I'm gonna go back to the dr and tell him to give me some meds. Goody.
 
 
Picture
Man alive I have so much to tell you all.

First off, I retract (most of) what I said about dietitians sucking and being money grubbing jerks. I posted a craigslist ad and also an ad on some other random site about finding a dietitian and being very clear that I cannot pay them. Believe it or not, I got a lot of responses. A lot of recent grads, which is fine with me, and in general just a lot of people looking to help. I offered to barter design services, but many of them said they'd just do it out of the kindness of their hearts.

Not only did I find I dietitian but I found the jackpot of all dietitians. I found Sara, a girl who lives 10 minutes from where I work, a recent grad, who also has MS. Holy shit! Mega perfecto. Not only is Sara so rad that shes willing to help me out, but she knows her shit. So Sara if you're reading this, I totally appreciate your efforts.

So if you're in a similar boat as I am, post an ad, you never know who will answer it. But if you meet a total creeper, don't blame me.


On another front, some of you may have seen the picture I posted from the office of a clinical trial neuro. So I did it, I went and I chatted their ears off with questions galore, smart ass quips and concerns. I began the initial testing to see if I even qualify for the study, which is the Tower Study, for teriflumonide. It's an oral drug that does pretty much what every other oral drug in testing does. Its nothing special, but its available.

I don't really know what I was expecting at my first visit, but it was probably something like this:
  
Opening credits similar to that of House*, good theme music and rad MRI scan graphics. Cut to opening scene of me in an office with a team of doctors around me, as we laugh and maybe even cry about how shitty MS is, but how we're all so confident in this drug there is a light at the end of the tunnel. The doctor is very knowledgeable and can answer any questions I have ever had about MS, in fact hes the doctor who invented this drug so he knows everything about it. Everyone has white lab coats and stethoscopes. I have a team like Cameron and Chase to follow me around from test to test in a giant hospital. When I take the long silent pause to think about doing the study everyone is on egg shells, and then when I finally say "ok I'll do it" everyone erupts into joyous cheers and they all hug and dance and hand me a "welcome to your trial" gift basket. I leave smiling and confident in my new treatment and also like the fucking Samaritan of the year for signing up myself as a lab rat. Que theme music and closing credits.

It was more like this:
I pull up to the largest Neuro clinic I've ever seen. The waiting area is not very full but its HUGE. I didn't wait very long, but Jenny (the research coordinator) comes out and walks me into a generic lame-o exam room and tells me to fire some questions at her. Shes not positive what the drug does and will get back to me. She talks to me about the forms I've gotta sign, and stresses a ton about how if I get knocked up on this drug I'll birth some crazy half-ling baby, so I should be SUPER careful while bumpin'. I then ask to see the Neuro over seeing this jazz and I wait close to a full year for him to get in there. Hes nice, knows his shit. Though he totally almost talked me into another trial on the spot. Anyway, I ask him tons of questions about the drug, why they're doing this specific trial, what he thinks about the other DMDs, LDN and the Epstein Barr Virus just for shits and giggles. Then he said something that totally made some effing sense. He said, he thinks that MS could be caused by a virus, but not one that just stays in your body forever. He thinks that at some point we get a virus that looks very similar to other parts of our bodies, and once the immune system gets done fighting that one, it gets confused and then starts to attack the myelin. So its not that its continually fighting some crazy infection, or that its overreacting and just flaking out, but that its confused. Which make sense, and I may now be taking this on as my own theory.

So Dr. Thomas Giancarlo is his name in case you're wondering. So Dr. G leaves and Jenny and Chris come in, Chris is this cutsey old lady there to do the typical neuro testing and ask me a bunch of questions about poop and feelings. So I have to walk, and jump, and feel pin pricks you know the usual. I have some weirdo thing in my right eye with my pupils (don't remember what its called) but its so fantastical she brings in a PA to check me out because shes "only ever seen 1of these before".

So Chris is done and apparently I'm all good, Jenny is back, I sign my life away, and also consent to an AIDS test. Weird. I'll be crossin' my fingers on that one....kidding.

So I still have some X-rays and an Ultrasound to do before we even find out if I qualify...but I don't really think I'll get denied. So I'm pretty much doing the study. However when I agreed there was no welcome package, no music, no confetti falling from the ceiling. It was very anti-climactic. Though, for me, this clinical trial is like a baby step above what I'm doing to control my MS now, so I guess I shouldn't have expected fireworks and gift baskets with sausage and cheese just yet.

So I left and while waiting for the BF to pick me up, I called my sister filled her in, laughed at a joke about a condom and called it a day. Life unchanged.

*If you don't watch House I apologize because you wont get a lot of this. Also if you don't watch House, I'm sad that you're missin' out.
 
 

Sometimes I feel like a flake. The crappy part about this is that flakiness is one of my biggest pet peeves. I cannot stand flakey people! I hate when people bail on plans or lack planning skills in general. I have unfortunately become one of those people. It seems like I never really know how I'm going to feel from day to day; be it my level of energy, brain fog, headaches...and the list goes on. When I think about how disappointed I become with people like me, it really sucks. I have this major complex about being the one who disappoints. Hypocrite that I am, I have been perpetually disappointed with people lately. I think it's true that what we can't stand in others is really just what we hate most about ourselves.

So I'm feeling the MS "flake factor" trickle over into every aspect of my life. It seems like the time in between feeling like a steaming pile of poop, is just not enough to make everything I want to happen, happen. Perhaps the geniuses who have told me that it's almost always Type A personalities who get MS are right? Somehow I find this doubtful, but perhaps I am too anal for my own good. It's like I have this ever growing list of things going in my head that I want to do not only for myself, but for other people. Unfortunately I feel like it's effing baby steps all the way, and by the end of the day I've barely made a dent in my list of things to do. Why is it that shit is just so overwhelming lately?! Have I always been like this, or am I letting MS make me feel like I can't accomplish everything that use to seem so easy for me?

On the social side of the "flake factor" I feel like I'm not exactly being the friend that I want my friends to be. One of the things that I have found so important for me is just feeling like my friends honest to god, give a shit about how I'm feeling or what's going on with me. The awful part about this, is that I do a terrible job lately of making sure people know how much I actually "give a shit" what's happening in their lives. I guess it's good to remember that I'm not the only person who has had shit hit the fan in the last year, in fact I don't know a single person who isn't dealing with some major life malfunction these days. Either way, I realize that social crap is a pretty important part of our "being" and it's something I definitely need to work on. 

The hilarity to all of this is in about five minutes, I might have myself convinced that I am conquering the world. I just wish these moments of self assured victory weren't so fleeting. 


 
Sexy time. 05/06/2009
 

So I did a little snippet in the old newsletter about sex and MS, and its sorta important so lets revisit. Lets talk about sex, baby.  So if you're my mom, or some other family member and this weirds you out...stop reading now. We're going to talk about the problems women with MS face, and give some possible solutions in an  attempt to save our sex lives.  The number one issue reported is loss of libido. Which is probably no news to you.  The next complaint is vaginal dryness and loss of ability to orgasm. Which if there is one way to kill a mood it’s a dry va-jay jay, with a side of no orgasm. To top it all off there is always that really cool possibility of losing bladder control during your orgasm if you can even get to that point. So what do we do about it?  Well you could swear off sex forever, but I’m going to guess that’s not going to work for any man (or woman, I don't judge) in your life. But how do you explain to your man (or woman, again, no judging) that it’s hard to get in the mood, and even if you get there your hoo-ha might not be on board and you’re afraid that you might pee all over them even if you do get to orgasm.

Well you can start by simply explaining that MS can impair the nerves in your vagina, which then makes it difficult to respond to sexual stimuli.  Or you cannot explain that, and stock up on your favorite lubricant and make sure to use a lot of it. In most cases when women report that lubricants are not working for them, it is because they aren’t using enough.  Applying lubricant can be a bit of a downer (unless you're all freaky like that) but choose between having a wrecked mood for a minute or completely breaking off the whole deal.

As for dealing with a low libido there aren’t really any great quick fixes. There are a few drugs you can take to up your sex drive, and there is always counseling for your relationship.  I don’t necessarily think that counseling will help, its not like you’re not attracted to your partner and you need to rekindle things but rather your body is rejecting the idea of sex.  There is also no great way to deal with bladder control.  The best option is to make sure you go to the bathroom right before sex.   I’m sure there is some drug you can take to help this too, but if you’re like me, you pick and choose your drugs to keep them minimal.

Also its my opinion that the more sex you have, the more sex you want.  We get so self-conscious about our bodies and all of the crazy stuff that could happen or could go wrong that we totally take yourself out of the mood.  If we just let go and let our partners do their job they will be happier and in the long run hopefully you will too.  Also as embarrassing as it is, talk to your doctor. These are the people we talk to about bladder and bowel incontinence, we shouldn’t be afraid to talk about out lacking sex lives. 

And not to brag or anything, but I don't really have any of these problems, so I'm by no means the authority on fixing MS related problems while doing the dirty. So if you have something that works, or something you heard from a friend of a friend, comment. Let others know.

We are women in our 20s to 30s (and even all you old ladies out there deserve some good bumpin') ; there is no reason that our sex lives should be suffering.  We have the rest of our lives to have bad sex...

 
 

I have hit the three month mark on Avonex. Not that three months has any sort of significance, other than the fact that I'm calling it an "anniversary." It's like the first year of a relationship where every month is an anniversary. Okay, maybe only I am that lame. Anyway it's nice to have finally hit a point where I'm no longer waking up on Monday mornings with dread, wasting time worrying about how the shot will go. The last two weeks have been my most smooth needle work yet. Even with doing the powder form, which requires me to mix up my drugz before I inject them, I'm generally done within about four minutes. I have been fortunate enough to not have dealt with severe side effects, and the small things I do feel are easily avoided or dealt with by alternating Tylenol and Aleve. Avonex has also helped me become much better at guzzling water and staying super hydrated, I'm crossing my fingers this isn't the only benefit this drug will have for me.

It's obviously no secret that I have some reservations about being on Avonex. There are times where I feel like a huge sucker, and am slightly grossed out that I am contributing to the money mongering pharmaceutical industry. The general stats for Avonex also leave much to be desired, in my humble opinion. I once read someone compare taking one of the MS drugs to buying a Cadillac, and asking if you would really buy one that only worked 30% of the time. Although I can't argue with this logic, I'm obviously behind the wheel. I'm just hoping the car doesn't go "Christine" on my ass. Either way, this is where I'm at right now. I am giving it a fair shot, no pun intended. I will continue Avonex for all of these reasons: I have mastered the art of the jab, it isn't making me ill, I have insurance and an insanely cheap co-pay, it makes my family happy to know that I'm doing what I can, and there's a chance of a chance that this could keep me from relapsing in the near future.

Part of what compelled me to again touch on my use of Avonex was the recent release of the "Champs" study, ten year follow up stats. The average relapse rate of patients on Avonex was once every four years, and that aint bad. I could continue to get analytical here and say the same could be said if you weren't on therapy, but I think that's a given. Drugs or no drugs, if I could go four years without a relapse, I would be pleased as effing punch.