Friday, October 26, 2012

I didn't qualify! :(

Science Fair 2011, about to eat my research. Photo credit goes to Shelby M.
Due to the severity of my Endometriosis, I have undergone 3 surgeries and many awful hormone therapies. My doctor says that it is possible that the scar tissue traveled from my uterus to the rest of my abdominal cavity, which would explain all the pain I'm in. Sadly, if this is true, I'm going to need more surgery very soon.

For those who want to know what my pain feels like, here's a little description:    

My pain is composed of four layers.
Layer 1: You know how when you cut yourself, you get a scab? (duh) And you know that if you try to stretch the skin with the scab on it, it won't stretch properly and will cause pain, as the scab won't stretch with the skin it is attached to. Now imagine you have lots and lots of scars and scabs on your intestines, bladder, and anywhere else inside your abdomen, and make that the first layer of pain that I feel every day.
Layer 2: Ladies, you know what menstrual cramps feel like, so you can add a layer of that underneath the stretching, stinging pain from the scar tissue. Guys, in case you were curious, menstrual cramps burn; it almost feels like you have to poop really, really bad, but can't.
Layer 3: This layer can only be described as an angry little dude in there taking his frustrations out on me with a dull butter knife. I really have no other way to describe this one because I don't know what causes it. If your imagination is as active as mine, you'll be able to imagine what this layer feels like. If not, at least the description will make you giggle.
Layer 4: Lastly, there is an overall achy, flu-ey feeling in all my muscles, due to the Fibromyalgia. It almost feels like I've been working out (that awful feeling of lactic acid building up in your muscle fibers) while sick with the flu.

That being said, I have been searching for different ways to treat my pain, and last week, I signed up to be a test subject for a clinical trial studying the effectiveness of a new drug that claims to treat Endometriosis. I was very excited to try it because the medication was supposed to stop the scar tissue from forming at the source.

But when a representative from the study called to interview me about my medical history, she said I didn't quality to be a test subject because I had been on the Lupron Depot shot within the past year. For those of you in the dark about obscure hormonal therapies, the Lupron Depot shot basically turns off all female hormones and is commonly used for FTM transgender patients. I was on a six-month cycle to suppress the hormones that were causing the endometrial lining of my uterus to grow and develop elsewhere in my body. Sadly, the "flush-out" period for the Lupron Depot shot is 1 year, and the study requires that you not have any kind of hormonal birth control/therapies in your system.

Now, since I have done plenty of research of my own, I know that when a researcher picks human subjects, they have to make sure to eliminate as many third-party variables as possible. However, hormonal birth control is the VERY FIRST THING most gynecologists put you on after an Endometriosis diagnosis. You'd think that a doctor who specializes in Endometriosis would know that. What an idiot. He's gonna have a real tough time finding subjects who haven't been on birth control for at least a year. For the sake of the study, I hope he can find enough women who meet his ridiculous criteria., but for the sake of me, I hope he doesn't find anyone. That'll show him. Dumbass.

Not that I'm bitter, or anything.

<3 Mouse

Wednesday, October 24, 2012

Blame it on the Vicodin

Today, I had an appointment with my pain management specialist, and for the first time in almost 4 years, I was given something other than Vicodin to treat my pain.

Don't get me wrong, I like me some good old fashioned opiates as much as the next person, but the longevity of my usage of the hydrocodone/acetaminophen cocktail was becoming a major point of concern to myself, my parents, and my closest friends. I don't always feel like I can express my concern for my drug dependence to even my closest of close friends because they don't really seem to understand the gravity of the situation. Many of my friends are guilty of making me out to be some kind of stoner because of the drugs I have to take to keep myself from dying. People blame the drugs on my social blunders, but the truth is, I'm actually just a socially awkward person. I know it is easy to misunderstand, since drug use in our society is usually looked at with blinders on. According to our society, if you are on Vicodin either 1) you're a junkie or 2) you are Dr. House. So far, I've found that I am neither of those.

This is why I don't talk to my friends about things like this anymore. They never listen and they treat me as if I am some kind of meth addict instead of procuring the true story. If they would just ask, they'd know that because I've been on Vicodin for so long it doesn't get me "high" anymore. In fact, it barely helps with the pain it was meant to treat in the first place. No, I don't become more awkward or "silly", or what-have-you after taking my medications. Stop blaming it on the drugs and instead accept who I am more fully.

Just before I left school, I was eating dinner with my roommates. My roommates and I were pretty good friends, and we always had pretty bizarre conversations. I'm not exactly sure what we were talking about, but mushrooms ended up being our very intellectual point of conversation. I ended up saying something like, "I had a friend who was a mushroom once. He was a fun guy!" (pah dum PSH). And although my joke was pure gold, my roommates just went silent. They coughed awkwardly and stared at their plates. No one made a peep. I just assumed they didn't find my joke funny, since I was usually the one who did anyway, and went right on eating. Eventually, a minute or two later, one of my roommates made a little giggle and shouted "OH! I get it! A fun guy... like a fungi!". The rest of my roommates began to laugh at the now apparent hilarity I had unleashed upon the world and when all they laughter died down, I asked "you really never heard that one? It's really old." and my roommate just replied, "We all just assumed you were on some kinda Vicodin-trip and tried to ignore it". The sad part of this story is not that my roommates assumed that I was making a stoner-comment before guessing that I made a silly pun, it's that it happened all the time and they treated me as if I was a small child who didn't know any better just because I was talking a silly pill. It was very hurtful and I wasn't exactly sure if I should waste my time confronting my roommates about it because it wasn't really their fault that they thought I was eternally stoned- I never really explained it to them in much detail. It's not like I haven't tried to explain myself to my friends. Now, I am not mad at my roommates at all. Yes, what they said was very hurtful, but our friendship is bigger than that and I'm not about to let a handful of ignorant comments get in the way of it.

Another time, I was placed under the spell of an uncontrollable giggle-fit during class. You know, the ones where nothing is actually funny, but you just laugh and laugh as if your life depended on it. A good friend of mine just announces to the class "She's on Vicodin! Don't mind her!". Not only is it completely inappropriate to shout out your friend's personal information, such as the kinds of prescription medications she's on, it's not right to assume that I'm not sober-and to tell others to never mind me because what I have to say obviously isn't worth anything- just because I can't stop laughing. Laughing is an uncontrollable reflex, and everyone has had at least one of those moments where they just can't stop laughing no matter how hard they try. My problem is that people associate my uncontrollable fits of laughter as a side effect, not as the something they experience too. The only difference between my fits of laughter and anyone else's is that people can blame mine on something.

Now, some of you might say "But Mouse, you make silly jokes about being high all the time! If this bothers you so much, then why do you do it too?". In all honestly, I hate making jokes about being high because I know it only feeds the rest of them. I only started doing it to relieve some of the awkwardness from it all. When I moved into my freshman dorm, I had to explain my illnesses to my roommate, hallmates, and RA so they would know what to do in case of an emergency. I told them a few of the drugs I was on (just in case I was unconscious, they could tell the paramedics what I was taking) and almost everyone I told said "Vicodin! Are you high?". At the time, I didn't really want to explain it, so I just said something like "No, but there's a Peacock on your floor".

For those of you who don't know me very well, I have a very sarcastic sense of humor. Most people grow accustomed to it. Now, maybe I shouldn't have assumed those people knew my sense of humor, or maybe I should have made it clear that those kinds of jokes were only okay when I said them. Whatever the case, I felt it was kinda awkward when other people would start joking about my apparent drug abuse, so it relieved the awkwardness when I added a bit to it. That being said, from now on, I will no longer cover your ass if you made another stupid comment. Instead, if you call me a stoner to a stranger again, I'll call your pathetic ass out. :) Yes, I've tried to explain this to all my friends at one time or another, but they never take me seriously because I'm obviously too stoned all the time to make a coherent argument. Obviously.

So this is my explanation, Ladies and Gentlemen. I could easily talk about this subject for days because of how purely hurtful it is to me. If I do something that appears a little bit weird, that's because I am a little weird. It's not the drugs. It never was the drugs.  It will never  be the drugs. I am more than just the sum of the pills I take every 4-6 hours as needed. I am a human being who likes to be treated as such with the same respect and dignity that I treat you with. I don't ask you if you took your meds today just because you say something a little silly or make a bad pun, so you shouldn't do the same to me. To me, blaming it on the Vicodin is more hurtful than simply telling me that you're embarrassed to be seen with me, because I can't help that I'm on the stuff. If I had the choice, I wouldn't be taking any medications to treat my pain. Sadly, I can't function without the pills. For me, each and every pill is a reminder of how little control I have over my own life- it's not a vacation. Also, I don't care how much money you have, I'm not selling you any of my pills.

Thanks to those who took the time to read this and even more thanks to those who take what I have to say to heart.

<3 Mouse

Tuesday, October 23, 2012

Mouse the Broken Girl

I'm not gonna lie. I've been kinda unsure about the idea of keeping a blog about all my medical conundrums. I never really felt like it was anybody's business as to what kind of random nonsense was going on inside my body. Plus I was always too lazy to start said blog. I suppose I am still too lazy to write a blog, but since I really have nothing better to do, I might as well start a blog. (And yes, Jacob. I did steal the idea of writing a blog from you. There. I admit it.)

My name is Mouse and I'm a Psychology/Biology/Pre-Med major at Clark University. (And in case Jarrad, my boss at Clark University Admissions  reads this: Clark University is a very good school and you should go there.) I hope to become a neurologist and I will become the recipient of at least 12 Nobel Prize awards. According to Google, I have the same IQ as Stephen Hawking, but I find that highly improbable since Stephen Hawking never actually took an IQ test (also according to Google). This past Fall was supposed to be the beginning of my second year of college. Instead, it was the beginning of a semester that would never be completed. I was placed on a Medical Leave of Absence last month and was forced to put my dream of becoming a Neurologist on hold for another year. Don't worry, though. I do plan to go back for the Fall 2013 semester and while I am on leave, I plan to take a couple of classes at a local community college so I don't get too far behind.

You might be wondering why I was placed on medical leave. To tell you the truth, we don't really know why either. Besides the two diagnoses of Endometriosis and Fibromyalgia, we don't really know what's going on. I am in constant pain- more pain than most patients afflicted with Endometriosis or Fibromyalgia are ever treated for and I am constantly showing new symptoms, like tachycardia and a random skin rash that kinda just shows up whenever it feels like it. In short, I'm a clusterfuck. For nearly 4 years, my doctors raised their hands in defeat after test after test came back negative, and no signs of improvement came about. I have never been so frustrated in my life. You'd think that knowing you didn't have cancer, Acute Intermittent Porphyria, or Lupus would be enough, but the very fact that I am still in chronic pain all the time with no answer is getting a bit annoying. At least, if we knew that I had Porphyria, for instance, I'd be able to prepare myself for the madness and paralysis that would soon follow. Instead, I play guessing games. When I was arriving back on campus this past August, I thought the pain would be somewhat manageable. I thought I'd be able to handle my tougher-than-average course load. I thought I'd be active in musical theatre, as I had been since I was 4 years old.

But, things don't always work out the way we planned.

I hope this blog becomes more than just a 19-year-old girl complaining about her life on the internet (although, be warned. I do complain a lot!). I hope that by following my journey to a better diagnosis, other frustrated patients can know that they are not the only ones suffering or wondering why their tests never show the answers they were hoping for. All-in-all, this blog is for me as a way to vent about some of the idiots in the medical industry, so shut up and have a terrific day.

<3 Mouse