Amanda's Medical Fund forTreatment

Hi my name is Amanda! Many of you that are going to read this know me already. For those that don't, I am going to tell you my story. On May 15, 2012 is when my life changed. I thought I was going in for a third and final foot surgery in five years. I wasn't looking forward to this surgery because I knew it was going to be a harder recovery than the two prior surgeries. I also was never going to be able to wear my beloved high heels that I was known for.  I knew something was wrong the second I woke up in the recovery room. I woke up screaming in pain. I have never done that before. I woke up to my foot already in this bright yellow cast. The doctor had a huge needle and he was injecting pain medication in between each toe to lessen the pain. This was a pain that was unrelenting. My foot and leg up to my knee felt like it was in fire. This was the day that my life changed forever!

The pain never went away and in August of 2012 I was officially diagnosed with Chronic Regional Pain Syndrome (CRPS) Type 1 also known as Reflex Sympathetic Dystropy (RSD). CRPS is a progressive disease with no cure. CRPS is a chronic pain condition in which high levels of nerve impulses are sent incorrectly. It is believed that CRPS occurs as a result of a dysfunction in the central nervous system. In other word I am wired wrong! Since my diagnosis in August I have several nerve blocks, medication changes, and two very painful spine surgeries to have a spinal cord stimulator implanted to help lower my pain level and slow the progession of my disease. Unfortunately my disease has not only gotten worse. It has also spread to my other leg, so it now affects my whole lower half.

There is a silver lining. When I first got diagnosed I wanted to find out as much information about the rare disease I had so I went online and discovered The Power of Pain Foundation. Barby Ingle also suffers from CRPS and she founded the POPF to help people with pain to have information and resources about the diseases they were afflicted with. About a month ago I saw that she posted about a clincal trial for ketamine infusions being done at The Hospital for Special Surgery in New York City. You might recognize that name of that hospital. That is where Bill from the Little Couple on TLC had spine surgery this past season. I applied for the trial and just found out I have been selected to receive the ketamine infusions. The downside is the trial is 6 months and I am responsible for all the travel exspenses. I need to make 10 trips ranging from 2-7 days in length during the 6 month trial.  I am not able to travel alone so that is going to make everything doubled. My husband will need to take time off of work to accompany me on all of these trips.  That is where the gofundme fundraiser comes in. I need everyones help to make this possible. My doctor has tried to get me a small dose of ketamine in a lotion and my insurance will not even cover that. Ketamine Infusions are the only treatment for my disease that has shown to be able to put CRPS in remission.  With this trial all the medical exspenses are covered. I would not be able to get the ketamine infusions and boosters without being part of this trial because unfortunately most insurance companies will not cover it. Most people that do get ketamine have to pay for it out of pocket and it is very exspensive. Please consider donating to my medical fund to help me get these infusions. Any amount will be greatly appreaciated. Thank you!

Donations

  • leslie baker 
    • $50 
    • 62 mos
  • Anonymous 
    • $5 
    • 63 mos
  • Anonymous 
    • $20 
    • 63 mos
  • Jenny, Jimmie, and girls 
    • $35 
    • 63 mos
  • Michele & Gian Fojas 
    • $50 
    • 63 mos
See all

Organizer

Amanda Carney-Hansen 
Organizer
Kenosha, WI
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