Jill's moving and shaking meds

Ten years ago this month, Jill had a stroke during surgery. As a result, she has a condition called Nystagmus. It's where her optic nerves are damaged and cause her eyes to jump constantly. In the natural, this disease is progressive. There is no cure and her Neurologist (who is a specialist in this condition) has said that it will get worse as time goes on and she will have it until she dies. While it's been difficult on her, I know that it's been incredibly hard on her family. While we pray and believe that God can heal her completely, the only medicine that works is a very expensive one (about $9/pill & she takes 3 a day). If she doesn't take it, there are withdrawals that come like a vengeance and these symptoms are incredibly painful and alter her mood. Her family has and is making incredible sacrifices to ensure that she has this medicine so that she can see and function.    I believe Jillybean has the largest fan base of anyone I know and together, we can ensure she gets the meds she needs. Her doc wants to put her on disability but she can't afford to go to the appointment to get this started. With God and her friends, she WILL get there and get her meds covered!! Any money raised will go for her doctor appointments and medications (that cost 27.00 per day or 810.00 per month).  LET'S DO THIS FOR JILL!!

Jills own words:

Medical Journey
I had a stroke during surgery in 2006. I woke up from surgery only able to see silhouettes. Some tests were done in the hospital and I was told I developed a condition called Nystagmus due to a vitamin deficiency. Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements. These movements often result in reduced vision and depth perception and can affect balance and coordination. I was in the hospital for 2-3 weeks enduring all the tests and being loaded up with vitamins in my iv. Upon being discharged, the Neurologist prescribed a medication called Neurontin. Neurontin (gabapentin) is an anti-epileptic medication, also called an anticonvulsant. Gabapentin affects chemicals and nerves in the body that are involved in the cause of seizures and some types of pain. My Doctor thought it would help slow down the involuntary jumping of my optic nerves. However, this medication caused me to be completely lethargic. I didn’t leave my room very often and, in fact, have no memory of anything during the time I was taking it. Several other medications were attempted with no success. Several years of numerous Doctors, medications and tests went by. In November 2012 I was rushed to the ER and had emergency surgery for a complete bowel obstruction. They were rushing to prep me for the OR and one of the nurses was reviewing my chart and mentioned a stroke in 2006 during surgery. Mom & I looked at each other, then the nurse. He re-read the chart and it definitely said I had a stroke. While it was great news to finally know what happened, it was the beginning of yet another chapter in this journey. I couldn’t qualify for a malpractice suit (simply to help with the costs of medications & medical appointments) because the Virginia Statute of Limitations is 2 years. Since 2009, I have applied for Medicaid and Disability and was denied. I stopped working in 2007 because of the condition & all the symptoms, as well as the effects of the medications. I didn’t have the will to fight for help anymore. It alone was exhausting, but I was also enduring several surgeries because of repeated blockages. I have had 10 surgeries since 2005. Being unemployed because of, both, the effects of condition itself and the side effects of the medicine and uninsured has complicated things greatly. My parents have been amazing and have supported me above and beyond, and never complained. However, the financial aspect has become too great. This is why my friend, Patty, set up the donation site.
I am doing everything I can to pursue benefits to provide medical and financial resources so that I can live independently. I am praying and believing for complete and total healing. In the meantime, I have been blessed with a Neuro-Ophthalmologist from Georgetown University Hospital/Medical Center. He specializes in Nystagmus and, because of the donations that have already come in, I have an appointment with him this Tuesday, April 5th. He has helped me obtain free medication through the company that distributes it. However, there have been some issues in the last few months (out of my control) that have caused me to lapse several times. This Specialist is going to (in his own words) “do everything I can” to help me get Disability benefits. This is huge because he specializes in the condition. I have had to apply for Food Stamps as well.
This is the most difficult season I’ve faced in the last ten years. I don’t like to be vulnerable and ask for help, especially publicly. However, I’m desperate. All I know to do is keep working on things in the natural and believe God for the supernatural. I decided a few years ago that my life would be an “open book”. Little did I know it would be this open. It is humbling and is just for a season.
It is important for anyone who reads this to know that all of the funds received go solely to my medical expenses. I’m not a scammer hoping to get rich. I know that everybody’s got stuff going on in their world and don’t want anyone feeling pressured or obligated to give. However, if you can I am incredibly grateful. I ask that you join me and my family in praying for the miracle I so desperately need.

Much Love & Many Blessings,
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Patty Culpepper Downer
Chesapeake, VA

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