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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.
 
 

Well I survived. I got to the Ass Man early in hopes of getting out of there early, however as per usual at the doctors they take for-fucking-ever. So I'm sitting in the room, surrounded by diagram after diagram of colons and intestines and all sorts of other super stuff. The nurse comes in and turns out, she was cool. She chatted me up, and thankfully didn't ask me about all of my symptoms because I wasn't really in the mood to repeat myself 1,000 times (don't they EVER read the effing chart?). So she informs me that I will probably have the Doc as well as a fellowship on my case. Well AWESOME, I felt like saying. Whats better than talking about your asshole and poop with a total stranger...2 TOTAL STRANGERS! Bonus!

So I'm hoping for the poop fairy to swoop in an grant me one wish which would be to just have one totally normal doctor. Well turns out the poop fairy doesn't exist...who knew?! So in walks the fellowship guy....which is actually slightly attractive. Damn it. And instead of playing the shy game, I let him have it. I had already made my symptoms lists before my appointment so I was rapid firing what my average dump is like. He couldn't write fast enough. So then he leaves to consult with the good 'ol doctor. I then wait for about a year for them to come back into the room and in walks this little dude. So not only am I lucky enough to get 2 doctors...but 2 male doctors. O Happy Day.  So the doctors asks why I have come in. GREAT! Remember that part about not reading the charts? So I get to rehash my fantastically embarrassing bowel movement fairy tale with these guys for a second time. The doctor is a nice guy...kinda quirky but nice. And the whole time hes there all I can think is , "Please don't put a finger in my ass. Please don't put a finger in my ass.....". So after a chat about my liquid pooh, my college degree, and the weather...doctor says, "Poop Princess, you have IBS". And in a sick way I felt relieved, although not really. I wanted to scream at him, yea no shit (pun intended). P.S. I for see the poop puns never getting old. So deal with it.

He tells me at my age, he wants to take the "natural" route...so take 2 benefiber tablets a day, eat the crap outta some veggies/fruits, and see ya in 4 weeks. And I appreciate the natural route, I do, really...but COME ON! You can't give me a break from my routine of anti-diarrheal's, pepto tablets, gas-x, tums...ect? Really I just paid you a copay for you to tell me to eat fiber? Damn it.

So that's what I'm doing. I am going to eat fiber like its my job. I would say I'm hopeful...but I'd be lying. The reality is I'm stoked that I didn't get a finger or any other probing object up my bunghole, but it still doesn't really tell me that I'm all kinds of healthy. If I had a crystal ball, I bet it would show me a camera up my ass in my future.

 
Poop Princess 03/19/2009
 

One of the most common problems among MSers is bowel issues, as much as we HATE to admit it. This is a problem that one of us has had some major issues with, however since its not exactly something that awesome chicks like us like to admit, we're going to post our poopy pants problems anonymously. Its a last ditch effort to save what little dignity we have left. The reality is this is an all-to-common problem, and it needs to be talked about openly, and with the graces of the anonymity of the interwebz we can now do this. And with that,  I introduce to you the poop princess.

I have had bowel problems for easily the last 10 years. When I was in high school I swore that once I was a grownup with my own insurance I would get this addressed immediately. I however, lied to myself. The idea of someone creepin' around my bunghole wasn't exactly top of the priority list. I did go last year to a specialist, but felt like an idiot and was pretty much disregarded by the doctor. Humiliation complete, thanks doc. But over the last year or so my ass has had one hell of an attitude and it has once again become time to address the situation. Tomorrow, I will be going to yet another Ass Man. And this time, yes it IS a man. Holy Hell could this get any worse? YES Am I nervous? HELL YES. Do I think the dr is going to be staring wildly at my asshole? YES. Will this be possibly the worst thing I've encountered in a while? HELL YES. 

But do I need to go? yes. Will the start of this process make me totally miserable? Yes. Will I get some good shit to write about and probably make you all laugh at my misery. Sources say yes.

So as a I chronicle my pain in the ass (pun intended) doctor's visit and future visits, be glad its not you that has posted your personal shit (pun intended) on the interwebz for the world to see. And hopefully if I can help one of you turds (no pun intended) out there to get through this too...it will all be worth it. No, thats a lie. It still will not be worth it.