Relieving the Pressure: I Need a Spinal Tap

$5,950raised of $5,950 goal
100%

Organizer: Neoma Lindley Beneficiary: Neoma Lindley

This fundraiser is closed

Hello. My name is Neoma Lindley, and I live with a condition called 'pseudo-tumor cerebri', or IIH. This condition causes severe migraines, vision problems, and at times leaves me in such pain that I can't function.

Treatment for this condition is a lumbar puncture and tap, to remove excess cerebral-spinal fluid. However, this procedure is expensive, and since my mother's death last April, I have not been able to afford a tap, meaning my inter-cranial pressure is very high, and I am struggling to function.

I need this tap, and I need it as soon as possible, but without aid there is no way way for me to get it.
Updates

Updates

05/16/2013
by Neoma Lindley
So much has happened since last I was able to make an update.

Basically, the doctor I had been seeing finally told me that he was not liscensed to prescribe a spinal tap, evenafter assuring me back March that he could. And further more, despite not being a neurologist, and even after seeing  the history of tests that led to my diagnosis, he didn't fully believe that I had IIH. He was worried about my having a brain tumor or latent head injury.

Long story short, after having to spend nearly 1,800$ of the money I haveraised thus far on doctor visits and new tests, I finally have a prescription for my spinal tap!

There is only one hangup left, and that is the cost of my recovery. I cannot recover at home, because of the pet dander and risk of infection and spinal meningitis, and after the cost of those tests and doctor visits, I just have enough with some private savings for the tap itself. So I come to you guys for one last push -- help me get the last bit of money I need together to make this work!
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04/21/2013
by Neoma Lindley
I've been really tired lately, but I'm starting to come back. I'm putting my job search on hold right now, because at the level of functioning I'm at now, I wouldn't be able to really do anything at a job anyway. I can barely string a full sentence together outloud the last few days.

But with the weather starting to warm up, I'm feeling a little more energy, if no less pain. So that's pretty nice.
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04/17/2013
by Neoma Lindley
<img src="https://www.youcaring.com/uploads/fundraiser/45035/headache.jpg" alt="" width="1000" height="750">
This is a picture I did a little while ago trying to visualize how I hurt. And maybe vent a little. It's kind of depressing that people don't seem to understand that a migraine -- especially a PTC migraine, is a lot more than just a headache.

Some times, I really do just feel broken, hollowed out and shattered, but I keep pushing on because the alternative is to give up.

I won't give up.
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04/13/2013
by Neoma Lindley
Oh I am so tired. I can't seem to sleep, an it's still hard looking at the monitor of my desktop. Getting an update to go up from the Nook is really not working, I see. I tried to make one a few nights ago, but alas -- nothing happened.

Anyway, WOW! I'm almost halfway to the goal! I can't believe how amazing you all are.

I spent the last few days getting ready to take my dad to Kalamazoo for this rehabilitation thing the Council for the Blind does. They're going to re-teach him to read braille and get him some new canes and stuff. Now some people there are trying to talk me into attending classes for a few years to become a mobility instructor. That's kind of exciting, but I know I wouldn't be able to handle going to school right now. I can't even handle going to the store half the time.

Things really are looking up though!
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04/13/2013
by Neoma Lindley
Oh I am so tired. I can't seem to sleep, an it's still hard looking at the monitor of my desktop. Getting an update to go up from the Nook is really not working, I see. I tried to make one a few nights ago, but alas -- nothing happened.

Anyway, WOW! I'm almost halfway to the goal! I can't believe how amazing you all are.

I spent the last few days getting ready to take my dad to Kalamazoo for this rehabilitation thing the Council for the Blind does. They're going to re-teach him to read braille and get him some new canes and stuff. Now some people there are trying to talk me into attending classes for a few years to become a mobility instructor. That's kind of exciting, but I know I wouldn't be able to handle going to school right now. I can't even handle going to the store half the time.

Things really are looking up though!
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04/02/2013
by Neoma Lindley
It's been a while again since I updated, and I feel bad about that. I got super sick over the Easter holiday and it was pretty hard just getting out of bed, much less on a computer. For some reason YouCaring is super janky on my Nook, which is what i use when I'm feelign sick because the screen is a little gentler on the eyes.

I'm feeling a little better today, and holy wow am I astounded by the change in funds. Officially over a thousand dollars today. You guys are amazing. There's three months left on the fundraiser, and I really think I'm going to make it. I've been in contact with some doctors who would be willing to make a payment plan with me, letting me get the tap before the fundraiser is even finished and pay it off over the next few months.
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03/17/2013
by Neoma Lindley
I've started working on an idea to spread word for this fundraiser offline. The last few days have been really up and down for me healthwise, but I'm doing my best to stay positive.
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03/15/2013
by Neoma Lindley
Hey, sorry about the lengthy pause again in updates. I've been feeling really sick lately, my head hurting bad enough that it's painful to sit up, much less sit in front of a computer.

I am blown away guys! Less than two weeks in (only ten days!) and you've gotten me well over ten percent toward the goal! You are amazing!

Please, please keep helping me out by spreading the word. I'm so scared of going blind again -- scared that this time it will be perminent. I need to have this procedure done as soon as possible.
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03/11/2013
by Neoma Lindley

Sorry I haven't updated in a  few days, guys. I was super busy trying to score a job, but that didn't pan out. I'm still trying, but I have to admit, the failure over the last few days was kind of bumming me out.

Here are some things I thought I should share about my condition:

I have IIH (idiopathic inter-cranial hypertension), specifically pseudo-tumor cerebri. Basically, from what I've gotten out of my doctors and research I've done on my own, that means my body doesn't process the cerebral spinal fluid that cushions my brain from my skull.

That means that pressure builds inside of my head, causing pain, and in many cases, symptoms very similar to having a tumor in the brain (hence 'pseudo-tumor').

For me this causes chronic migraines, dizziness, poor motor control, and several speech/language issues including:

  • nounal aphasia (misusing or losing nouns in a phrase)
  • dyslexia (scrambling of letters or, at times, whole words in a phrase)
  • lethogica (forgetting or losing words, names, places, and entire phrases while trying to articulate thoughts)

There are a lot of medications that have side-effects used to help this condition, but I haven't seen anything about a medication specifically tailored to help people living with IIH or pseudo-tumor. The treatment advised for me is regular spinal taps, to physically remove excess fluid from my body.

This process is a quick enough procedure, though I admit is is pretty painful. But it's candy next to the constant migraine and back pain.
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03/08/2013
by Neoma Lindley
<img title="Big Smile" src="http://www.youcaring.com/uploads/fundraiser/45035/012.jpg" alt="Big Smile" width="755" height="603">


Trying to lay low today to get this migraine cut down to size, so I'm not struggling through tomorrow's interview, so again today, I'll be brief.

I'm really excited by the possibility of going back to work, especially considering that I've been told by a few people that with my migraines and light sensitivity I couldn't/can't work.

Excuse you, I can do anything. I am Neoma.

And holy wow! We're up a whole 'nother percent! 6% in now
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03/07/2013
by Neoma Lindley
Phew. Today has been super draining, and my head is killing me. My internet keeps dying, so I'll keep today's update short.

I had another job interview today, and it went much better, I have a second interview for the company on Saturday morning. Things are looking great in that aspect.

On the fundraising front, wow! three days in and we've made it to 5%! I have a really good feeling that this might actually work, and thank you guys so much for checking my fundraiser out, spreading the words and donating. You're all amazing.
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03/06/2013
by Neoma Lindley
Today was a big day, and I'm closing out not feeling so great. I've been job hunting since last August, and I finally got some interviews lined up. Today was the first one, but... well, it didn't go well. The interviewer cmmented that i didn't look well, which was disheartening from the first. She also didn't like my hair -- I wore it mostly down, with just the front pulled back out of my eyes, but you could still tell that the sides are shaved.

It was supposed to be a sort of 'first impression' interview, and I couldn't exactly say "Well, I'm six months overdue for a spinal tap and I shave my hair off to help reduce the weight pulling at my scalp" as part of our introductory conversation.

Ahh well. I have another interview tomorrow. Maybe I'll just leave my hair down entirely this time.
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03/05/2013
by Neoma Lindley
<img title="Old Photo, New Smiles" src="http://www.youcaring.com/uploads/fundraiser/45035/DSCI0513.jpg" alt="My Smiling Happy Face" width="800" height="600">

Wow guys! Just wow. I'm slow getting on the computer these days because the screen really hurts my eyes, but I was shocked when I logged on today and saw all the emails and so many donations! I can't tell you how much this means to me. We're 4% in, and that's after only a day. Thank you guys so much!
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