I feel more naked than ever revealing all of this to you, but if you stuck with me you deserve to know.
Most of you know by now that I suffer from nerve injuries and have developed Complex Regional Pain Syndrome (CRPS) stemming from my car accident in January 2014.
Initially it seemed I only broke my right foot and bruised my shoulder. My foot healed well thanks to physical therapy and my doctors recommended and cleared me to return working out at the Gym in September 2015. How exciting! I missed working out a lot. While weight lifting, my shoulder (which was slightly sore since the accident) gave out with some popping and crunching to boot. I stopped that exercise, continued with cardio, and did not think much of it. The next morning, I woke up and my right arm was paralyzed. An Emergency Room visit with no answer and months of doctor referrals followed. The pain kept intensifying, my skin started peeling on my right hand, the circulation was terrible oftentimes it turned purple, and my hand was ice cold to touch but my nerves were burning constantly like nothing I had experienced. No doctor could give me a diagnosis. I became a test tube for the Pharma Industry but nothing seemed to help. Thankfully, I got approved for a referral to the National Consult at the Cleveland Clinic in Ohio, which I visited for 3 weeks in February 2015.
After doing multiple tests and seeing many specialists I was diagnosed with CRPS - Type II (aka Reflex Sympathetic Dystrophy - RSD) resulting from nerve damage to my ulnar and median nerve. Doctors said there’s only a slim chance I would regain full function of my hand again. That was one of the hardest things I’ve ever heard. Their words hit me like a ton of bricks, but I was determined to do everything in my power to beat the odds. CRPS is a deliberating condition, also called the suicide disease. The pain levels are at a 45 on the McGill Pain Index, which has Chronic Back Pain at a 25, Childbirth at 35, and Amputation at 42.
I have been doing aggressive treatments and therapy since I returned to Florida in March 2015.
Since then I have done an 8 week inpatient physical therapy program in Jacksonville, FL in March and April 2015 which helped me regain use of my right arm that had been paralyzed for almost 6 months prior to this treatment. After the Rehab Program I got Emmalou, my sweet Australian Shepherd/Cattle Dog to be my service dog. She has been my emotional rock ever since, and supported me through everything the past two years.
The nerve injury and the corresponding pain persisted and after many nerve blocks (I felt like a human pin cushion!), daily physical therapy, occupational therapy, yoga, meditation, and other conventional treatments my doctors recommended Ketamine Infusion Therapy. This is an experimental treatment and not covered by any insurance in the US. I finally found a clinic in Phoenix, AZ that was highly recommended and went for treatments in August 2015. I started out with a 10 day inpatient infusion. The treatment showed promise immediately, for the first time I had periods of minimal pain and I could tolerate light touch to my right hand again. I was able to cut my nails for the first time in months, I could tolerate water on my skin without crying, my circulation was coming back. It was an amazing success. I was warned that this would not be permanent and I would need frequent booster infusions. The first one was scheduled for mid September so I decided to rent a vacation home and stay in Phoenix for another month. The pain slowly returned during the 3 weeks before the booster but after the 2 day infusion I was almost pain free again. It became clear that this treatment is my rescue. I had to make a decision, my finances were in bad shape.
I had spent 80% all my savings at this point (I was saving buy a house before my accident happened) and my income did not even cover my rent anymore. I decided to move to Phoenix so I could continue my treatment and hopefully return to work (MFC) full time. The move was expensive, I had to hire help for everything as I was not allowed to lift anything nor could I drive a truck across country. My cats Tommy, Brian and my Ferret Lily were still in Florida at a Boarding Facility at this point and I had to pay a friend to transport them.
I managed to move 2300 miles across country! My pain was getting better and things were starting to look up.
I found a room mate in Phoenix and moved into my current place in November 2015.
Since I was no longer a resident of Florida at that point I had to switch health insurance. Being self employed I was paying for a gold plan from United Healthcare for the past 3 years in Florida. I switched to UHC Arizona and signed up for what I thought was the same plan. Unfortunately nothing stayed the same. Many of my medications were suddenly no longer covered, I had to fight for every specialist that I needed to see for my condition and more and more out of pocket costs accumulated. At this point I had to rely my credit cards to pay for most of my out of pocket medical expenses since the move ate up the remainder of my savings.
In April 2016 my pain was returning and I went in for another booster. Another 2-day infusion and I was on the mend again. Physical therapy and medications were enough to manage my CRPS symptoms along with the pain and I slowly could return to a partly active life.
Unfortunately the medications that I was taking were staring to take a toll on my body at this point. I was on Fentanyl patches 50mcg every 3 days, I was taking Percocet every 4 hours, Klonopin 3mg per day, Gabapentin, Clonodine, and multiple other pills mostly to combat side effects of those medications. I started having thyroid issues, my concentration was terrible and I could barely function anymore.
I asked my doctors about reducing the medicine. I started to reduce the pain medicine. First, I got off opiates, it was a horrible experience. I tapered both the patches and the pills, and finally was opiate free on 7/22/2016. Next were the benzodiazepines (Klonopin - similar to Xanax). This was even harder and my doctor was very hesitant about it. I was tapering them slowly and it was supposed to take 1.5 years to get rid of them. In December 2016 I was not able to pay for my health insurance anymore so I had to accelerate the taper and I took my last dose of Klonopin on 2/1/17. For the first time since January 2014 I was not taking any medications! It was amazing, but the benzodiazepines withdrawals would haunt me for months. I had nightmares, night terrors, migraines that wouldn’t go away for many many weeks, shaking, chills, couldn’t eat, and was severely depressed most of the time. I had anxiety and panic attacks frequently every day for months. It felt like a success to make it to the end of each day. Camming was so hard during this time. My room count was extremely low, we barely had anything to talk about since I felt horrible with hardly any sleep, and I was paranoid that I was boring you all. My camscore took a major hit and bottomed out at 2500.
In June things started to look up again. The depression faded, I could sleep again, and my days started out on a positive note again. I started taking film production classes, produced new content, and cammed semi regularly again. It felt amazing to begin getting my life back and feeling like “me” again. I was having so much fun during my shows, and you all made my birthday amazing. It felt as if things were starting to turn around and once again I felt a lot of optimism for the future which was really hard during the Klonopin withdrawals and the resulting depression. I worked out daily again (dropped to 21% body fat - the lowest in years), and my daily physical therapy was a breeze.
On 7/25/17 I had a flat tire, and changed it myself hitting the top of my hand in the process. My hand cramped up shortly after, it was a shock to my nervous system. I could feel the CRPS symptoms come back within hours, the pain knocked me off my feet. I knew I needed Ketamine Booster Infusions when the symptoms kept building over the next days. Thankfully my doctor could see me on short notice and she wanted me to come in for infusions immediately.
My financial situation is a disaster at this point. Thanks to my withdrawal symptoms, I made barely made any money in the past 6 months. I did a fundraiser on short notice on 8/7 and 8/8 and you all thankfully (and wonderfully, love you guys) chipped in $1172! I did a 4 day treatment starting on 8/9 which cost me $4000 including all the necessary blood work, the EKG, etc. all of which I had to pay cash since I don’t have insurance anymore. The treatments are helping short term but I need more to get more then temporary relief again. My doctor thinks I have waited too long since my last booster (April 2016) and I probably needed a 10-day course again.
This is where I am at now. I don’t have money to pay my rent. I maxed out my last credit card that I kept for animal emergencies to pay for the 2nd and 3rd day of the treatment.
In short: I am $50,000 in debt, my roommate moved out 3 months ago, I cannot pay my rent, and I am too sick to move. To keep any chance of going into remission again I need 8 more Infusions which will cost $750 per day = $6000.
As you can tell, I seriously need your help.
I’ve tried to be positive and entertaining even during hard times while keeping my financial situation to myself for the past 2 years but at this point I have to straight up ask for any help I can get. I figure it can’t hurt to ask. What do I have to lose at this point?
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