Status Update November 19, 2015

Well, it's been a long time since I've posted, and unfortunately this post won't be as optimistic as the last one because now I've stumped another doctor. I've been seeing the same pain specialist at Cedars-Sinai that I mentioned in my last post, and I really like her and the thought she's put in to treating me, but she admitted to me that she's stumped the last time I met with her.

In addition to what I listed in the last post, here's all the medications and supplements she had me try that had zero effect on my pain:

Flexeril (muscle relaxer)

Lorzone (muscle relaxer)

Venlafaxine (SNRI)

Marinol (the legal prescription type of weed that's been around for decades)

CoQ10 (supplement)

Alpha Lipoic Acid (supplement)

Turmeric (supplement)

Dextromethorphan (main ingredient in cough syrup)

Under her orders I also tried another few months of physical therapy and a few months doing gyrokinesis, Feldenkrais technique, and light pilates, all of which either caused me more pain or did nothing. She also gave me a prescription for topical Ketamine, a drug my dad used to tranquilize animals with back when he was a zoologist. It's the first topical thing I've tried outside of topical CBD that's helped my pain, and it works better than topical CBD. However, I can only use it on a small spot or else I could fall into a k-hole. So it's helpful in that I can put it on the spot that is hurting me the most, but it doesn't help the rest of my ribcage that's also in pain.

In terms of high-CBD medical marijuana, I'm very thankful for it because I can take it and am able to do more things, but the downside is that when I do things, it causes more pain. So I'll take CBD to drive somewhere and do something but when I get back and for the next few days I'm in more pain and am so exhausted that I have to spend whole days lying down, and there's nothing that will get rid of that exhaustion except resting, sleeping, and waiting it out. I'm trying to find the right balance where I space out the days I do things so that I don't over-exert myself and end up couch-bound for days. I still avoid doing most things, but sometimes an experience is worth it so I'll load up on CBD and do it and then just suffer through the following days. 

I recently started a YouTube Channel where I make art and show the inspiration behind it, partly to bring some joy to my life and structure to my day, and partly to try to start to carve out a way to be able to make a living while having chronic pain. I was hoping that medical marijuana would allow me to be able to work again, but for the reasons I outlined above, it hasn't. Even a CBD-loaded half day at work at a job outside my home would wreck me for the next few days, and often my pain is too strong for CBD or topical ketamine to get me to a level where I could work. For the YouTube channel, I can plan my shoots around days when my pain is on the lower spectrum, and I can take breaks to lie down with a heating pad whenever I need to, and can edit lying down with my laptop. I'd love to be able to do some actual work I get paid for from home, but that's something I've been trying to find for over 2 years to no avail. I'm still looking though.

On that note, I want to issue a little public service announcement. Have an emergency fund. Have a big emergency fund. And if you can, have disability insurance. When my pain started, I was a freelancer with health insurance through my then-domestic parter, but I wasn't eligible for disability insurance through his company as a non-employee, so I didn't get it. I had the recommended 6 months worth of expenses in savings as an emergency fund for one of the first times in my life and was pretty proud of myself for being so responsible. But when you can't work, and you have lots of medical bills, that money dries up real fast. I applied for Social Security Disability after I had been disabled for one year, which is their requirement for eligibility, assuming everyone will have emergency funds to last them that first year. However, like 70% of applicants, I was denied. Since my condition is so rare and isn't even a real diagnosis, I understand why. I appealed the decision, and have now been waiting over 14 months since the appeal to find out when my court date will be. So it's been two and a half years since I've been able to have any income, and the only reason I'm not homeless right now is because my parents are supporting me, which isn't sustainable. I have no idea when my court date will be, or if I'll win, so I'm in limbo. Even if I win, I won't be getting much, just enough to barely keep me above the poverty line. So, PSA, don't get disabled and if you do, be rich!

Anyway, to bring it back to my doctor, she told me that I still don't have a diagnosis (my chart just says "chest wall pain") so she wants me to see a neurologist to see if they have any ideas. She gave me referrals to one at UCLA and one at Cedars-Sinai. The UCLA doctor turned out to be semi-retired and not taking new patients, and the Cedars one isn't taking appointments for new patients until March 2016. So I made my appointment for next March, and now I wait.

Here's a video that represents my relationship with doctors:

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