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Intersistial Cystitis Disabling Me!

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Here is my story, please help with my battle with IC, intersistial cystitis, every $1 means a lot. I am suffering and unable to work, and have to wait a tedious process to even see if I get approved for disability. This is an uncurable disease. My IC story and other conditions built up over the years is below. They also currently believe I have lupus and fibromyalgia but am waiting for tests and diagnosis to be returned.  I am currently trying to apply for disability but told it can take years.  As of 4/3/18 I just had a flare that lasted a month and a half, and I am still having pain, just tolerable pain sometimes. 

 

I will post pics of medical records when they arrive in the mail as updates. 


The video is a good description of IC created by IC angels, here: https://www.youtube.com/user/ICtheCure check out her channel! I would make a video myself, but i am not well enough and healthy enough to even do so. I’ve had a never ending horrible flare for weeks that will not go away and keeps getting worse. I couldn’t even consider putting makeup on, i would have to stop to try and use the bathroom, although lately t hurts too much to try. 

 

With symptoms of fibro and lupus on top of IC, if that's what it is, or something else, has left me even worse than before. With what little time I am okay some days, is short. I will no longer be doing art commissions, and disability said that I couldn't anyways, and it was putting in no income regardless and took every second of life I have. 

Most of you know I am suffering severe intersistial cystitis, have been unable to work, am seeing drs every other day, my pain keeps getting worse and worse, and Most medicines and treatments have given me horrible reactions. 

I spend most days crying and shouting and pain, but when I feel alright, I'd love to try to make money and do art commissions when I am able--I have been unable to work and my boyfriend has been suffering and trying to take care of me, I have a minimum of $500 each month to pay on my credit cards/medical debt that has built up with interest, for multiple times I've had to pay out of pocket when I had insurance taken away.

I am trying to sign up for disability but my appt is on the 20th, along with several drs appts, and i have an appt this thur, though i saw a dr 2 days ago. I am unable to live, see friends anymore, even play video games, or cosplay. I am selling all of my cosplays as well. 

If continue not being able to work, I fear I will become homeless or drag my boyfriend and his dad down, or debt collectors could come after me. People keep reccomending expensive physical therapy and acupuncture, and things I cannot even consider when my boyfriend has been trying to take care of me, and I tried to work in tears and was told "I can't" and I'm a "distraction." Even most of IC is bathroom frequency and GOOD days for ic patients are urinating 20-30 times a day, and walking around and moving makes me worse, I was told I will not get payed for my time in the bathroom, reasonable, but I am always in the bathroom, and now,m urinating is unbelievably painful, excruciating, and I can't pee for a few minutes on the toilet, I have to take deep breathes, position myself properly, be very careful and meditate and try to relax the agitated muscles, that scream when I try to pee, it constantly makes me horrified and scared, and has been causing me to shout in fear and pain altogether. 

For weeks now the pain is moderate to severe, and this never ending flare has never even taken a break. I would honestly prefer to die than live like this, but I would at least like some stress taken off by knowing I have a chance at survival.  Most IC patients say they would prefer cancer because the pain is the same but you get a relief of dying.

If I could at least get some of my debt chipped away, or at least have the minimum payments covered each month since I am not able to work, 

 

 

I will be posting photos of diagnosis sheets and medical records when i get them in as well, waiting for them to be mailed before I send them to disability 

 

MEDICAL CONDITION 1:  RECENT

I am making this page because I was already $10,000 in medical debt.

Recently, a lot of you know I was diagnosed with intersistial cystitis over the past month. It is an incurable disease and you can read about it here: https://www.webmd.com/urinary-incontinence-oab/interstitial-cystitis#1

For the past few years I've had insurance taken away twice during medical emergencies for making 10 cents more, and it took them months of losing my faxes and physical mail of proof of payment to get new insurance, Last year, I was diagnosed with chronic insomnia, which I had multiple hospital visits for and had multiple times of sleeping 3 hours on a 2-week scale, hallucinating, and having panic attacks and migraines daily, eyes hurting, unable to sleep whatsoever, with both prescribed and home remedies and over the counter. Within 5 months it subsided.

------- MEDICAL CONDITION 2

Before that, the year previous I was diagnosed with IBS, which was very severe, in a case it took them the entire year previous to figure out what it was, or figure out what medicine was for me, I still worked on the medicine, and had worse symptoms than most cases, and was constantly in the hospital.  You can read about it here: https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/symptoms-causes/syc-20360016

 

MEDICAL CONDITIONS 3 -----

The year before that, I was suffering panic attacks for no reason, every other week, and even have has seizures from these and multiple hospital visits, with therapists unable to help me, medicine that never helped, and only time was able to fix it. I have generalized panic disorder and generalized anxiety, Now recently this year have some social anxiety as well. A lot of this resulted from the year before, having to abruptly move out of my house with no money, my mom lost her house, my sister ran away, and I was to live with my dad and at the time had a very bad home life and situation with my step mother. 

 

-------

On top of this, I am missing several teeth and have jaw and dental work that need done, which i didn't even include in this price amount. I can take photos of all my missing teeth, and I had a lot of work done last year, however, I still have a couple grand worth of teeth work that needs done, and that isn't apart of this fund unfortunately, I can't even put it into consideration until all this debt is paid, I've been struggling for food as my mom was nice enough to buy me a lot of groceries ((she has no money either.)) 

And this is before I even get all my hospital bills from recent events, unfortunately, because of this past week, they tried to put a catheter in medicine in me to help my IC, it created a reverse effect that hasn't happened in apparently 10 years ((So they said)) but for the past week I've been to the hospital, urgent care, on pain meds and still in severe level 10 pain, on the toilet every 2-3 minutes, and sleeping the most I can on pain medication to try to recover trauma from the area to not worsen the pain. Any help means a lot, and help means you get art. Thank you so much for helping me. 

 

THIS is more of a COMMISSION page than asking for money:: THINK ABOUT IT

 

You are helping someone out and getting art in return!!

 

A few people have been suggested I make a gofund me. Maybe people will take my need seriously if i both work hard and give art back in return. 

 

It will really help me, and probably take a burden off of Jake, who is doing is absolute best, to help me, and I am trying to get better so I can work, but each day has been worse and worse and worse...

 

Organizer

Phoenix Sylph
Organizer
Hyannis, MA

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