Thursday, November 19, 2015

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:

Tuesday, March 3, 2015

Status Update March 3, 2015 - California!

Hello from my new bungalow in LA! I've been in California for a month and a half now, and have had a chance to visit some doctors, so I figured it was time for an update. First of all, let's address the main reason I came out here, high-CBD medical marijuana. I have my California medical marijuana card and have basically been trying CBD in every form I can find, and there's a lot - pills, bud, edibles, tinctures, vape oils, topical lotions, transdermal gels, sublingual strips, etc. It's all awesome, but a lot is really expensive (and obviously not covered by insurance) so right now I'm trying to find the most cost-effective way to ingest it. I think the pills might be the best deal, but some of the other things work more quickly, so I'm doing a lot of experimenting with what works, how long it takes, how long it lasts, etc. I'm not being very scientific about it right now because I'm just excited about trying everything, but that will come. As of now, I can say that I feel like I haven't had pain as bad as I'd had pre-CBD, mostly because I can now actually treat it when I feel it coming.

Anyway, onto the non-weed doctors - the bigger hospitals/research facilities want nothing to do with weed here, even though it's legal in the state. I could go off on a tangent here about the need to legalize weed federally but I will not. I visited two pain specialists, one at UCLA and one at Cedars-Sinai. I was unimpressed with the doctor at UCLA - she didn't examine me, and she asked me what I wanted them to do for me, as opposed to offering ideas of her own. She also told me that I couldn't treat myself with medical marijuana and be treated by her at the same time because they don't know how weed reacts with other drugs. Then she gave me a coupon and prescription for Nucynta, a new opioid that's also supposed to help nerve pain. I'm not interested in being on opioids now that I've found CBD, so I didn't fill the prescription and decided to get a second opinion.

So today I went and saw a doctor at the pain center at Cedars-Sinai, and she was really great. She didn't say I couldn't use medical marijuana, did a thorough examination of my ribs, and had a lot of suggestions. She determined that the source of my pain was my cartilage, so she prescribed a few things to try to help it. One is calcitonin, a nasal spray used by people with osteoporosis, and a couple OTC things - Dona glucosamine and SAM-e. She also prescribed me some muscle relaxers to try for the pain, and gave me a prescription for physical therapy using an ultrasound. So I'm excited to try all these things because they're mostly new ideas to me, and they aren't going to get me addicted to opioids! I'm following up with the doctor in a month to see how everything is working. I'll update more then.

Also, not to gloat, but the weather in LA is AWESOME and I don't know why everyone doesn't live here. It's been really helpful for my pain to not have constant snowstorms, hurricanes and extreme temperature fluctuations - the sunshine does me good!

Monday, January 5, 2015

Status Update January 5, 2015

This is more of a personal update than a medical one, but I figured I'd post it here because I've posted previously about moving to California.

So, I'm not moving to the Bay Area now, I'm moving to Los Angeles instead, and Pete is staying in New York and we're breaking up. I won't go into details here, but the two of us are going to remain friends and yes, you can still be friends with both of us. Nero is coming with me to LA, and I'm moving next week.

I'm excited to live by the beach in the warm weather, find new doctors, and to have access to all the CBD I want.

I'm also looking for work in LA, so if you know anyone out there in the film/tv/video/advertising industry who is hiring, please kindly send them my way. Here's my website and LinkedIn profile.