Ack! I feel like a crummy person! I totally left my last post saying I have a surgery coming up, but I've been busy and feeling cruddy and just way too busy to find time to post and explain the surgery! I am so sorry to leave everyone hanging like that - a few people have messaged me to ask about it, so some of y'all know, but here's the scoop for everyone else.
(Here's the abridged version)
It's really not a big deal at all! I have a little tumor on my right index finger. The hand doctor/surgeon can't figure out for the life of him what the heck it is, so they are gonna take the whole dang thing out on May 3rd. They are taking very wide margins to make sure they get it all, so they will be grafting skin from the side of my hand. They'll first check if it's cancer, and then they'll send the tumor all over the country to different pathologists to see if anyone knows what it is. Once diagnosed, they'll go from there! (Oh and the doc definitely doesn't think it has anything to do with my EDS or other health stuff)
Crazy, huh? It's pretty bizarre looking. Very irregular edges, more looks like several lumps smooshed together - that's how abnormal edged it is. Kinda looks like Africa facing the opposite direction. And more short and fat. Haha now I'm getting all abstract with my description. (Oh- it's up by the surface of the skin and visible - that's how I know all this). It's not red or anything. It's not a rash or skin blemish. It's definitely a mass underneath the skin and all that jazz. And it hurts! So I can't wait to get it out and done and over with!
The only little teeny bummer thing is that I'll have to be in an ugly cast for as little as 3 weeks or as many as 6. And then a splint after that for who knows how long. The cast will definitely be on for my senior prom, and possibly be on for my graduation ceremony. But whatevs, right? I can bedazzle it or something for prom! hah :P
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Speakin of which, I might as well mention, prom is coming up! I'm going to two, possibly three proms! (1) the Starlight Prom (2) my Senior Prom, and (possibly 3) a church prom. (The Starlight Prom is held by the Starlight Children's Foundation, and is just for "medically eligible" teens, with chronic or terminal illnesses.)
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There was another whole shabang I was going to have to explain... but my brainpower is just about run out, and I'm exhausted. I'll have to write again tomorrow, and explain what happened yesterday. I want really badly to get some advice from the dysautonomia/POTS community, but I'm just too exhausted all of a sudden and the brain fog is setting in :( bleh. So sorry to run out of energy so fast, and I didn't even get to talk about the happy stuff yet either...
I'll come back to chat tomorrow, and I promise to explain my crazy day/emergency doc appt/stuff that happened yesterday!
-Jessica <3
To my friends and family who are here following me on this crazy part of my life, thank you for the support <3
To my zebra friends - stay strong, we'll get through this together, one day at a time!
If your lungs are as bad as you say they are, I hope you opt for a nerve block and no anesthia. I don't know any MD that would clear your for surgery with the trouble you describe. Be sure to get an H&P for both your PCP and Pulmonologist. I really think you should head to Mayo or Cleveland Clinic or another Health Center that works with patients with undiagnosed illnesses. Have you been tested for TB? Have you had INR and Protime testing to check for PE's in your lungs? Or a chest x-ray (also to rule out TB as the skin test could test normal and the x-ray could be positive and it's more reliable)? How about a bronchoscopy that can rule out many things including lung cancers. There are also sputum cultures as well; to diagnosis what sounds like quite serious issues. And if your under 18 it's your parents responsibility to advocate and get you the care you need and if they don't (I doubt that's the case) it's consider negligence on their part. If your MD's won't do any of these tests and things are as bad as you describe, you need to keep going until you find that doctor that will test you properly; hence the responsibility of your parents as someone underage (if you still are~can't remember if your 17 or 18)? It's very serious and a relative of mine was lucky enough to have a doctor catch PE's that others didn't and we almost lost her! At least things aren't keeping you sedentary and you are able to live your life. Good luck with the surgery! See if a nerve block is an option! I am not saying this too scare you but to aware you since it sounds like from what you say your doctors aren't taking you very seriously. If they haven't seen you having coughing fits or struggling to breathe; make sure someone video tapes an attack so that the doctors can take a look at it! You know how it goes, your sick and then you get to the doctor and your fine (it's like your car makes noise until you get to the mechanic). Good luck!
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