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:

Get More: Jay Z, On To The Next One, Music, More Music Videos

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!

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.

Status Update September 17, 2014

Not much to update, except that I told both my primary care physician and my pain specialist about the CBD and my plans to move to California. My primary care doctor was happy for me and asked questions about it, but my pain specialist seemed, if anything, displeased. She didn't ask any me anything about it, which I thought was kind of weird because you'd think a pain specialist would be interested in knowing more about something that helped someone with chronic pain where other treatments failed. She asked if I still wanted to try Lyrica, and I told her I want to hold off on it because it seems to have a lot of side effects, which I'm sure I'd get because I usually get them, and didn't think it was worth going through that for the 2 months it would take me to go on and off the medication, when I'd found something that helps my pain and gives me no side effects. I asked her to give me a better pain reliever than Tylenol with Codeine that I could take on days when I have really bad pain until I get to California, so she gave me a Percocet prescription. I asked for a refill on my Zofran prescription as well, because I'm still always nauseous. She thought this was a new symptom and asked if I had seen a GI doctor about it, which was a bit frustrating because I've said I'm nauseous at every doctor's appointment I've had, and if she'd looked at my chart she'd know that, and that I'd already seen two GI doctors. Anyway, kind of a frustrating visit but I got what I needed and it wasn't painful, so whatever. I think she was maybe upset that she couldn't successfully treat me?

Anyway, I'm excited to get to California and find a pain specialist who knows about CBD and can incorporate that into my treatment so I don't feel like I'm doing something my doctor disapproves of. It's looking like we're going to move in January of next year, which I'm very excited about. My mom and I are going out there at the beginning of November to find a place to live. Let me know if you know of any "420 friendly" apartments/houses in Oakland we could rent!

CHRONIC pain

So, I've got some good news that I've been reluctant to post for legal reasons, but I think it's really important that people know about it, so here we go.

I've found something that actually helps my pain, and that something is high-CBD medical marijuana. If you don't know much about the makeup of marijuana, which most don't, there's a few elements to it, one being Tetrahydrocannabinol (THC) and another being Cannabidiol (CBD). THC is what most people know about, and it's what makes you all giggly and high, helps nausea, and increases appetite. CBD is a lot less well known, and it's something that the medical community is just now discovering - none of my doctors in New York knew anything about it.

Right now the most well-known use for CBD is for childhood epilepsy, where kids will go from having hundreds or thousands of seizures in a day to only a handful once they take high-CBD oil. There's currently a pharmaceutical company in the UK that's doing medical trials with a drug derived from CBD for this purpose. Because CBD doesn't get you high like THC, most of the marijuana in the United States has been bred to have a high THC content but little to no CBD content. It's just now starting to be cultivated with high CBD levels in states with medical marijuana laws.

I first found out about CBD when I was home for Christmas in Washington state, and tried a tincture made of cannabis oil mixed with agave. You could take it orally or topically, and I tried both. It wasn't high-CBD, and didn't really do anything for me when I took it orally, but topically it worked better than other types of topical treatment I'd tried - Lidocaine patches and Voltaren gel (which didn't do anything). I was told there was a high-CBD tincture but didn't try it then because I didn't really know what it was.

Last weekend I went to California for my aunt's wedding, and was finally able to try capsules filled with high-CBD cannabis oil. I spent the day of the wedding in less pain than I'd been in since this whole ordeal started. I was able to sit with my family for 3 full meals, I swam in a pool with my little cousins, and I danced at the wedding. If you'd have seen me any time in the last year, then saw me on that day, you would have been shocked. I was shocked. My whole family was shocked. Then I got angry.

Angry because I've spent the last year and a half going to a dozen doctors, trying countless medications with crazy side effects, having painful procedures, spending thousands of dollars, and I ENDED UP CURING MY DAMN SELF. Ok, I didn't cure myself, but I found a treatment that works for me that can hopefully help me live a somewhat normal life again. And if it works for me, who else could it work for? There are people on costochondritis forums who have suffered for decades with no relief. There are people suffering from fibromyalgia, arthritis, and countless other conditions who are being given medications and painkillers with dangerous side effects (including death) that don't even work as well as CBD. And our federal government considers it illegal, so unless someone lives in a state with medical marijuana, they can't have access to it. This is what made me angry.

So, now I'm deciding where to go from here, and the best option right now seems to be moving to a state that has a medical marijuana program. Yes, New York just passed a medical marijuana program, but it doesn't take effect for 18 months, and it only covers a handful of conditions that doesn't include costochondritis or chronic pain. I would have to hire a lobbyist to try to get costochondritis added to the list of conditions, and it's unlikely that it would be added because it's a rare condition that usually goes away on its own and is benign. So I'd have to wait 18 months and still probably wouldn't even have access to NY's medical marijuana program.

Pete's work has an office in San Francisco, so we're looking into the possibility of getting him transferred there and moving out to the Bay Area. Not sure when exactly it will happen yet, but hopefully by the time our lease is up in May. I'm really excited about the prospect of living a mostly pain-free life, and am now putting together a bucket list of things I need to do in NYC before I leave. I'll miss you New York, but you kicked my ass and now I gotta go.

Song for today:

Status Update June 27, 2014

Well...the shots didn't work, again. At least this time I wasn't in agonizing pain on one side of my body (which my pain specialist couldn't explain) afterwards, just a little bit of pain at the injection sites and my regular rib pain. I think I'm done trying shots now.

Last week I went to fill my prescription for Cymbalta but was denied. This had happened a couple weeks ago when I first tried to fill it because my insurance wouldn't cover the full dosage my pain specialist prescribed. The pharmacy gave me half the dosage for the time being to take at full dosage, and told me to tell my doctor to call the insurance to get approval on the full dose, which I did when I got the shots. She told me she sorted it out then, but apparently she didn't. Anyway, I couldn't fill my prescription, and I'd run out of Cymbalta, so I had to go from taking 120mg/day - a high dose - to none (you're supposed to taper down the dosage as you stop taking it). My doctor was going to give me some samples while I waited to get approval for the full dosage, but I got a call from my insurance on Friday that her request for the full dosage was denied. This happens to me a lot because since there's no known treatment for costochondritis, it's never on the insurance company's list of approved conditions.

I had my follow up with my pain specialist on Saturday, and told her about the shots not working and the insurance denying her request. I also told her that I want to stop taking Cymbalta. I've been taking it for over a month and it's done nothing for my pain and has just made me extremely nauseous and tired all the time. It's also expensive. So she said alright, and suggested trying Lyrica next, a medication for fibromyalgia.

I'm not going to try Lyrica yet though, and told her I want to take a break from trying anything new for awhile, at least for the summer. I've had this condition for over a year now, and have tried dozens of different types of treatments, and nothing has worked at all. Most of the more invasive/physical treatments have just increased my pain, and the medicines don't work and give me miserable side effects. The only med that has ever had any effect in minimizing my pain is Tylenol with codeine, and that put me in the emergency room a few weeks ago.

So I'm going to spend the summer not trying anything new. I'm going to get back into the routine that taking Cymbalta wacked me out of, of doing postural restoration physical therapy exercises and going on walks every day. I'll still be taking Tylenol with codeine, and will hopefully figure out a replacement for that somewhere down the line, just not right now. I've been off Cymbalta for a week now and already feel a lot better, nausea and energy-wise. I might try to see a new physical therapist but right now I'm so sick of going to appointments that I'm not in any rush.

Shots!

Today's theme song:

I'm getting shots of steroids at noon today in my spine in the places where there was facet arthrosis. I'll go under anesthesia for it.  If they work, I'll start feeling it in a few days once the steroids kick in. Based on previous shots, I expect to be in a lot of pain starting from about an hour after getting the shots until I wake up tomorrow morning. Luckily, I only got through 3 episodes of Orange is the New Black yesterday so I'm not sad about having to lay on the couch all day :)

I'll post again after my next follow up with my pain specialist, which will probably be in a week or two. Thanks to Alice for being my chaperone/caretaker today.