Aloha Family & Friends, thanks for visiting my fundraiser. I am hoping to raise some money for a new wheelchair accessible van.
I have been suffering from a Complete Spinal Cord Injury for the last 25 years and from severe neuropathic pain for the last 15. The level of my injury is T-3, meaning that I have no sensation or movement below my chest. The nerve pain started in about 2002 and it has consistently gotten worse over the years. It is to the point now that it is keeping me in bed for at least 90% of my life. My legs feel like they are burning, tingling, pins/needles feeling, throbbing and squeezing from the time I wake up until the time that I'm lucky enough to fall asleep. As I sit in my chair throughout the day, it just gets worse which is why I'm having to lay down all of the time.
I feel like I am a pretty tough guy, but when it never lets up, it is really taking a toll on me. Every day feels like a battle just to keep a positive attitude and not want to give up. A lot of times I don't want to even breathe because my insides are so sore and on fire that I feel like I'm doing serious damage to myself by moving at all. I lay curled up in bed with the blinds closed and earplugs in because any stimulation to my nervous system equals pain. Those times are becoming more often than not.
I have spent hours and hours researching, I have been through every type of treatment, medication, and surgery several times over and nothing seems to help. I have tried traditional methods as well as alternative supplements and therapy, but nothing seems to help. Because I refuse to give up, every few months or so I will call a new Dr. and send them my MRI's and medical history just to see if someone else has a different idea. At this point, I keep getting the same answer but I am still hoping for that miracle. I am finding that neuropathic pain is the hardest to treat and there really is no help other to grin and bear it.
I am a single Dad of twin, 11 year old girls and I am really struggling to keep up. If I had no responsibilities whatsoever, I would still be miserable and uncomfortable. But, when you add on taking care of myself, my house, my job and kids, I am a bit overwhelmed to say the least. I have repaired computers for a living for the past 15 years (which I still love doing), but that has slowed to a trickle. I am unable to sit for more than a few minutes at a time, so I slowed my business to just laptops where I could work on them in bed. Even that is becoming really difficult and then to add on ordering parts, keeping records and dealing with customers, I am unable to do hardly any work at all.
With that being said, I don't have the money to purchase a new van to keep me going. Like anything specialized, a van that is converted with a ramp and hand controls is pricey and costs about $50,000. I am not one who like asking for help, I hate it in fact, but I am learning that sometimes you have no choice. I am at that point now and I am asking for your help.
If this is all news to you, it's because I don't like sharing what's really going on with my health unless I have to. I know everyone has their own problems, I don't want to sound like a complainer and I certainly don't want you to feel sorry for me. Desperate times call for desperate measures I guess.
With the money, I plan on finding a van that has an automatic ramp, electric door & hand-controls so that I can drive it. I also hope to find one with a kneeling system which lowers the ramp side of the van so that you can enter and exit the van easier. 2 other things I would like the van to have is an adjustable driver's seat to make the transfers easier and a removable passenger seat so that I can lay down when someone else is driving.
My current van has been one problem after another and paying for the repairs in addition to getting the van back and forth to the mechanic (about 45min. away), is becoming nearly impossible. Since I don't drive very far anymore because of my pain, I have to hire someone to drive back and forth and then I am stuck at home for several days while it's being worked on. The last few years have cost me thousands of dollars in repairs and I foresee thousands more in the near future. No one on Kauai can work on the ramps themselves so it involves shipping it to Oahu to have it worked on. I know mine needs some work and a buddy of mine that had similar repairs done said it could be $4-5000 when all said and done
Having a van that is setup for someone in a chair is really a life changing thing that most people probably don't realize. I used to have a normal car and taking your chair apart and putting in the passenger seat and then getting the chair out and putting it together each time you need to get out becomes a huge burden. Then you add on a fully adjustable seat, built-in hand controls and room to move around inside while sitting in your chair and it is a beautiful thing. Not to mention, I have an off-road, power wheelchair that I use outdoors and a van is the only way for me to transport that around.
So, thanks for taking the time to read this and I appreciate your generosity. You have no idea what this means to my family & I. If I can ever help you with computer problems or anything technology related, I would be more than happy to assist. I can work remotely or over the phone. Thank you so much and I hope life is treating you well!