Alex's CRPS Treatment Fund
Donation protected
My name is Alex…
In 2016 everything in my life changed after a routine bunionectomy. Everything. Shortly after the surgery I started experiencing constant, extreme burning and crippling, ineffable pain at my left foot. I had developed a rare and progressive autonomic nervous system disease called Complex Regional Pain Syndrome. CRPS causes extreme, disabling pain at the affected limb and the central nervous system, mainly the sympathetic nervous system (body’s flight or fight response) to go haywire. In addition to that, it also causes a myriad of symptoms affecting the body, emotions, and nerves. Due to the progressive nature of the disease, it has also spread to the rest of my left leg, my left arm and hand, among other areas in between. Wherever the CRPS goes the agonizing constant symptoms follow with it. I’m on numerous medications and have had many treatments to combat the CRPS. None have brought much relief, except for physical therapy. Unfortunately, the physical symptoms aren’t all. Both the condition and the medication I have been prescribed to cope with it make it extremely difficult to form thoughts, regulate my emotions, or keep focus on much of anything. It's been nearly three years and still I cannot walk unassisted, drive long distances, or stand for more than 10 minutes at a time.
That’s why I’m reaching out to you, in your generosity and empathy, to help me take back some of what I’ve lost....
This is the first of many experimental treatments I am pursuing, but it’s easily the highest up-front cost I've incurred so far. I will be getting in deeper, because I really no choice. These treatments aren’t covered by insurance. Insurance really only covers pain management, and management is not what I want. I don’t want more opioids. They make me irritable, self-harm, and anorexic. I am doggedly pursuing a remission, and that remission is going to cost me more than I could possibly have anytime in the near future. It’s been a struggle and I’ve had to ask for help, which I’ve been extremely fortunate to receive from my loving and supportive partner’s family. They've picked up where my own family has abandoned me. One of the first treatments I'm pursuing, and the first I'm going to have to do on my own, are ketamine infusions, a decidedly recent development in the treatment of CRPS. Unbelievably, the cheapest way to get the first round of this treatment is to fly to Denver, where it is the lowest price even accounting for travel and lodging. All costs included, it’s around $5000.
Unfortunately, fighting for healthcare with no relief and without help is nothing new to me. I’ve had to fight tooth and nail through medical bureaucracy since I was a kid, uninsured and on my own. I didn’t think that after all these years, when I finally grew up and out of that situation, worked hard to earn a position in my dream career (with insurance!), that I would I lose it all over again and end up back on Medi-Cal as a result of this disability.
CRPS Medications:
Duloxetine
Wellbutrin
Topamax
Lidocaine Patch 5%
Buprenorphine Patch
Buprenorphine Sublingual
Tramadol
Oxycodone
CRPS Treatments:
4 Ankle Blocks
2 Thigh Blocks
8 Sympathetic Lumbar Injections
2 Lidocaine Infusions
#AlexBeatsTheHeat
#AlexBeatsTheHeat
In 2016 everything in my life changed after a routine bunionectomy. Everything. Shortly after the surgery I started experiencing constant, extreme burning and crippling, ineffable pain at my left foot. I had developed a rare and progressive autonomic nervous system disease called Complex Regional Pain Syndrome. CRPS causes extreme, disabling pain at the affected limb and the central nervous system, mainly the sympathetic nervous system (body’s flight or fight response) to go haywire. In addition to that, it also causes a myriad of symptoms affecting the body, emotions, and nerves. Due to the progressive nature of the disease, it has also spread to the rest of my left leg, my left arm and hand, among other areas in between. Wherever the CRPS goes the agonizing constant symptoms follow with it. I’m on numerous medications and have had many treatments to combat the CRPS. None have brought much relief, except for physical therapy. Unfortunately, the physical symptoms aren’t all. Both the condition and the medication I have been prescribed to cope with it make it extremely difficult to form thoughts, regulate my emotions, or keep focus on much of anything. It's been nearly three years and still I cannot walk unassisted, drive long distances, or stand for more than 10 minutes at a time.
That’s why I’m reaching out to you, in your generosity and empathy, to help me take back some of what I’ve lost....
This is the first of many experimental treatments I am pursuing, but it’s easily the highest up-front cost I've incurred so far. I will be getting in deeper, because I really no choice. These treatments aren’t covered by insurance. Insurance really only covers pain management, and management is not what I want. I don’t want more opioids. They make me irritable, self-harm, and anorexic. I am doggedly pursuing a remission, and that remission is going to cost me more than I could possibly have anytime in the near future. It’s been a struggle and I’ve had to ask for help, which I’ve been extremely fortunate to receive from my loving and supportive partner’s family. They've picked up where my own family has abandoned me. One of the first treatments I'm pursuing, and the first I'm going to have to do on my own, are ketamine infusions, a decidedly recent development in the treatment of CRPS. Unbelievably, the cheapest way to get the first round of this treatment is to fly to Denver, where it is the lowest price even accounting for travel and lodging. All costs included, it’s around $5000.
Unfortunately, fighting for healthcare with no relief and without help is nothing new to me. I’ve had to fight tooth and nail through medical bureaucracy since I was a kid, uninsured and on my own. I didn’t think that after all these years, when I finally grew up and out of that situation, worked hard to earn a position in my dream career (with insurance!), that I would I lose it all over again and end up back on Medi-Cal as a result of this disability.
CRPS Medications:
Duloxetine
Wellbutrin
Topamax
Lidocaine Patch 5%
Buprenorphine Patch
Buprenorphine Sublingual
Tramadol
Oxycodone
CRPS Treatments:
4 Ankle Blocks
2 Thigh Blocks
8 Sympathetic Lumbar Injections
2 Lidocaine Infusions
#AlexBeatsTheHeat
#AlexBeatsTheHeat
Organizer
Alex Crumpette
Organizer
Oakland, CA