Saturday, December 19, 2009

Home for the here is always interesting.

I've come home for the month worth of winter break from college. Though I have another final on Monday, it's in the evening, so I didn't see the point in having to stay in the dorm for another few days.

It's quite funny, I came home on Thursday, expecting to spend Friday with my mother getting ready for Christmas. However, even the best laid plans can fall apart.

Thursday night my 9 year old sister became ill. Now, vomit is something no one likes, but as an emetophobic, I do get quite irrational when someone in our house is ill. I would normally sleep in my sister's bed, as there aren't really enough beds here since I've moved out, but seeing as she'd vomited and the room had that lingering smell, well, it wasn't going to happen. I, therefore, spent a good bit of time trying to sleep on the linoleum floor of our laundry room, which also happens to be my dog's room. Needless to say my body and the floor were not making very good friends, and my little mini Dachshund kept snuggling into the sleeping bag where I thought I would squish him. I finally gave up at about 3am and moved into my little brother's lofted bed, which is like sleeping on a slightly softer floor.

Today? Did a whole lot of nothing. Went to the store to pick up electrolyte drinks, broth, and Jello for my sister, napped, and that's about all. Happy Holidays indeed.

Thursday, December 17, 2009

Finals week is evil

It's 4:30am here in the frigid Midwest, and I'm still awake.

Because I have finals tomorrow. Two of them. One is bad enough, but two in one day is torture. One is comprehensive, the other only covers the past 7 lectures. I'm not sure at this point whether I should stay up, my first final is at 10am, or attempt to get an hour or two of sleep.

Either way, I'm gonna hurt later.
Gotta love college

Monday, December 14, 2009

Tragedy Poetic

I sit for a moment, taking in the staccato signals from my body to my brain. The pain weighs heavy on me tonight, one of those rare nights where it crosses the threshold from tolerable to torment. I know I'll not sleep unless I find a way to keep the neurons at bay.

I stand from my perch, coccooned in blankets at my desk. My body drags and I limp the mere feet to possible salvation. I clasp the keys in my hand and bend like the skeleton of a tree to reach the box under the chair. A small, black, unassuming case and its lock are all that stands between myself and possible freedom, at least for an hour or two.

I return to my hideaway, box in hand. Once seated I carefully meet key to lock, turning just enough to free the lid and gain access to sweet relief. I rifle through my stash - the medications I've saved for nights like this, knowing that callus, tired physicians are none too willing to prescribe some of the contents, their profession having hardened, jaded them. The labels cry out to me, familiar names, as I count the remaining pills in each bottle. A single Vicodin sits lonely in its spacious keep. A smaller bottle bares but one Valium. I spy a pair of Flexeril milling about in yet another container. These are just some of the residents in my box. The bottles all nestle together, all saviors, regardless. The rare with the readily provided, the mundane with the magnificent.

I weigh my options. The list narrows as I remove a contender due to difficulty to acquire. You'd have better chance getting a refill from the dealer on the street than a legitimate prescription. Another ticked off, not quite up to the task. I continue to weigh my options, my fields ever narrowing. At long last I decide, a contender I'd previously dismissed due to difficulty to procure.

It's nights like these that I loathe the physicians who have put down blanket rules for all patients, people they could help but won't, due to the illegal actions of the despicable souls who use the real illnesses of others as a ruse to get what they think they need.

Thursday, December 10, 2009

Happy Birthday...To me.

21 years ago today I made my entrance into this world.
21 years later I've lived, I've learned, and I'm still here.
I'm looking forward to the rest of my life, day by day.

Wednesday, December 9, 2009

Let It Snow

It's snowing tonight in Minnesota.
Actually, it's been snowing all day, and it shows no signs of letting up. Schools and businesses are closing left and right. Unfortunately, college rarely gets canceled. This means I'm going to have to get my arthritic butt up at 9am and attempt to hobble to my classes without falling, hurting myself, or dislocating anything. Joy.

My whole body rebels a bit more with every degree drop in temperature.
But, that's life I guess.

Friday, November 27, 2009

Getting to do something crazy

Today I got to do something amazing.

Seeing as it's "fall", the weather changes have had me exhausted and sore, but I still try to get out every once in a while. Tonight I got to go snorkeling. I live in Minnesota, so snorkeling in November doesn't exactly seem like it would happen. I do, however, live somewhat near the Mall of America.

Underwater Adventure, the aquarium tunnel thing, has recently begun offering the chance to snorkel in their Rainbow Reef tank. Tonight that is what I did. It was amazing. Being that close to so many amazing tropical fish, getting to visit their world, the exhaustion and soreness was well worth it.

Happy holidays!

Friday, September 11, 2009

30 Things About My Invisible Illness You May Not Know

Figured I'd do this, to give a little more info about myself.

1. The illness I live with is: Ehlers-Danlos Syndrome, Hypermobility Type
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: I can remember.
4. The biggest adjustment I’ve had to make is: Accepting the fact that there isn't a real treatment for this.
5. Most people assume: Nothing is wrong with me, and I complain too much.
6. The hardest part about mornings are: Just getting out of bed.
7. My favorite medical TV show is: House M.D.
8. A gadget I couldn’t live without is: My iPod. Nothing makes me happier than music.
9. The hardest part about nights are: Trying to fall asleep when I'm in so much pain.
10. Each day I take 7-11 pills & vitamins.
11. Regarding alternative treatments I:
Will try anything to ease the pain.
12. If I had to choose between an invisible illness or visible I would choose: Invisible.
13. Regarding working and career: College is very difficult, what with getting up early and all the walking/stairs.
14. People would be surprised to know: I was told I would never succeed in college, but so far I'm doing great.
15. The hardest thing to accept about my new reality has been: There are things I love that I can no longer do.
16. Something I never thought I could do with my illness that I did was: Ski.
17. The commercials about my illness: Don't exist.
18. Something I really miss doing since I was diagnosed is: Being able to run.
19. It was really hard to have to give up: My dreams of being a chef.
20. A new hobby I have taken up since my diagnosis is: Horseback riding.
21. If I could have one day of feeling normal again I would: Run around, go downhill skiing, spend all day enjoying life.
22. My illness has taught me: Not to judge people so quickly.
23. Want to know a secret? One thing people say that gets under my skin is: "Did you know you parked in a handicapped space?"
24. But I love it when people: Know what my illness is, and understand.
25. My favorite motto, scripture, quote that gets me through tough times is: I am not afraid to keep on living.
26. When someone is diagnosed I’d like to tell them: Keep your head up, don't let this stop you from taking on the world.
27. Something that has surprised me about living with an illness is: How ignorant people are.
28. The nicest thing someone did for me when I wasn’t feeling well was: Let me sleep in.
29. I’m involved with Invisible Illness Week because: I'm sick of hearing, "You don't look sick!"
30. The fact that you read this list makes me feel: Grateful.

Thursday, September 3, 2009

Having an okay time, until...

So far college has been okay. I moved in, got unpacked, and have been doing Welcome Week activities. Today, however, I managed to piss off the gods of chance, and paid for it.

I was participating in a competition of sorts, and I was to imitate a Jaguar. This entailed crawling around on all fours and growling. I figured, it's been a good day, so I did it. Right as I finished my imitation, I simultaneously put my knee down on my hand and yanked my hand forward.

Dislocated my index, middle, and ring fingers on my left hand all at the same time.

Well shit. I popped 'em back in, got an icepack from the student center, and kept going.

Tuesday, September 1, 2009

Moving day is coming...

That it is.

This Wednesday (also known as tomorrow) I will be moving into the place I will call home this school year - my dorm room. I've been packing for the past couple of days, finally went shopping today, and have been all-around neurotic. I'm not sure how I'm going to handle it, but I have to push forward.

It hasn't helped that my back and fingers have been acting up, making packing and getting everything done rather difficult. I've been downright exhausted. I have to say goodbye to my beloved doxie, Oscar, and my cats. The whole idea of going away for school, the money it's going to cost, the effect it's going to have on everything, just drives me crazy.

It definitely doesn't help that I now have to transfer all of my healthcare to a new city. I have to find new doctors, explain my condition a million times, answer the same questions and hope that they listen to me. I have to register with Disability Services, which I'm doing on move-in day, so they know what's up and I can get help from them. This whole thing is a gigantic pain in the arse...but I'll live.

I know that the first few weeks are going to be a mess, but hopefully it will mellow out after that.

Who knows, maybe, under all the stress and panic, I'm just a little excited.

Saturday, August 29, 2009

Welcome to my little alcove somewhere in a corner of the vast internet

I've avoided creating a blog detailing my life with Ehlers, because I didn't want it to define me.
However, I now understand that there is no denying such a huge part of my life. I believe an introduction is at hand.

My name is Jessica, and I was born some 20 years ago in South Dakota.
From the time I was young, my mother noticed some things about me that didn't seem quite right. I was late to walk, often sick, and complained of pain. At that time, we were poor, and had no insurance. The doctors, for years, said there was nothing wrong with me.

As time went on and I got older, school started becoming more and more difficult. The school insisted I had a learning disability, however the reality was that I was in pain. Seeing as I had no medical diagnosis, I was labeled as having behavior issues. The pain continued, some of my joints would spontaneously dislocate, and I continued to see doctors about it. They were rather arrogant, uncaring, telling me it was all in my head. I was quite sure it wasn't.

Finally, when I was 15 years old, an orthopedist noticed something odd as he examined me, and referred me to a geneticist. That gave me hope, that maybe someone would finally figure out what was wrong with me. At age sixteen, I saw that geneticist. She examined me, had me perform several tasks and movements. When she was finished, she gave me the answer I'd been waiting for; it wasn't all in my head. I had Ehlers-Danlos Syndrome, type 3. She explained to me that the collagen in my body was defective, and that's what was causing my pain and dislocations.

In the years after my diagnosis, I saw many more doctors. Some understanding, some still ignorant. I've been "fired" by doctors, because they had exhausted treatment options and could not help me. I've been diagnosed with other secondary conditions as well. Aside from the Ehlers, I have scoliosis, a flared ribcage, arthritis, TMJ, tibial torsion, planovalgus foot deformity, the last two corrected through surgery, however, this isn't a full list.

My day to day life is painful, but I keep going, because I'm not going to let this take me down.
This is me, take it or leave it.