Status Update June 6, 2016 - Good News!

Hi everyone, it's been almost a year since I've posted an update, and I finally have some GOOD NEWS! I started a medication a month ago that is actually helping me. It's called Low-Dose Naltrexone (LDN). It's usually used at much higher doses to treat opioid addiction and alcoholism, but recent studies have revealed that at low doses it does something completely different - namely helping people with MS, Fibromyalgia, and Crohn's Disease. I get it from a compounding pharmacy, it costs my insurance less than $1/day and me nothing because it's 100% covered. It has a Wikipedia page for non-science people like me who want more info, and there's also an article on the NIH website about it for those who want more details about the science behind it.

It's hard to describe just how much this drug helps me and the changes it will make to my life moving forward. It's also really weird to have something actually work after trying so many things with no results. Before LDN, my pain was so intense that it made me physically ill and I had to spend most of my days in bed. I had sharp pains when I breathed. I couldn't get through the day without having to take a nap to recover from the nausea and allover illness that doing basic things like showering, preparing a meal or running an errand would cause. I found CBD a couple years ago (see previous posts for more info on that) and it has helped me be able to escape those symptoms for a short period of time by making my pain go away, but it always just masked the pain and I would be punished by my body later for any physical activity I did while taking CBD. For example, I would take CBD to be able to go on a short overnight trip somewhere, but I'd be sick in bed for at least 2 weeks after. Or I'd take it to go out with friends on a certain day or night, but I'd be sick and in severe pain for 3-4 days after.

With the LDN, my pain is dulled significantly. It doesn't make me physically ill all day anymore. My extreme fatigue is gone. I don't feel like I'm going to puke all the time. My pain isn't completely gone, but it's manageable now and I have learned lots of techniques to manage it over the last 4 years that actually work now that my pain is at a lower level than it was. And importantly, my pain isn't just masked like it is with CBD - I can do something and not feel sick for days after. I'm still using CBD for breakthrough pain, but only need to use one pill every few days as opposed to multiple pills a day, plus a bunch for breakthrough pain whenever I wanted to leave the house. Yesterday I worked at my desk in the morning, then ran an errand, went to the doctor, went grocery shopping, went for a long walk/hike in the woods, and cooked a fancy dinner for my parents, with no nap. And today I feel fine. Before, I would have only been able to do one, maybe two of those things per day.

It's still sinking in that I'll actually be able to live a somewhat normal life again, and it's a huge understatement to say that I'm really happy to have gotten to this point in my treatment. I almost didn't get here, and have my mom to thank for the fact that I'm now on LDN. When I first moved to Seattle, I started going to the UW Pain Clinic, reputed to be one of the best in the country. The first doctor I saw there essentially told me I had reached the end of the road when it came to treatment options and left me crying in the exam room. She sent me to another doctor in the pain clinic who mostly does dietary stuff, and she put me on all sorts of supplements and a new diet, apparently the same thing she does for every patient, and it did nothing for me. I also was part of a study done by the Pain Clinic for 6 months, done by the psychologists there to try to improve the lives of people with pain through self-guided educational modules. I didn't find it very helpful because I was already doing a lot of the things they suggested and felt my pain was too severe for mind tricks to help it. There was a really interesting video as part of the modules that I did find helpful in terms of explaining why I have this pain and the genetics behind it. If you're someone with chronic pain or know someone with it I'd highly recommend watching it. It's a lecture by Dr. Daniel Clauw at the University of Michigan: https://www.youtube.com/watch?v=pgCfkA9RLrM 

So aside from that one video I was feeling pretty dejected about my treatment and the UW Pain Clinic, then my mom (who is a nurse practitioner) went to a women's health conference in Seattle, where the head of the pain clinic happened to be speaking. She went up to talk to him after and asked if he'd see me, and he agreed to. In my first appointment with him, he told me about 3 different types of medication to try that I hadn't tried yet, and suggested I try starting with LDN because it's the most different from anything I'd tried thus far. Its usage as treatment for pain is also quite new - all the studies I've seen published about it happened in the last 6 years, which is likely why this is the first time I'm hearing about it.

So let this be a lesson to everyone to NEVER GIVE UP and ALWAYS GET A SECOND (or 12th) OPINION because IT GETS BETTER and sometimes science just needs to catch up to you.
I'm starting physical therapy again this week to help assist my body in transitioning from a sedentary lifestyle to a slightly more active lifestyle. I feel like I have a new lease on life now, and am excited to finally get back to work! Now I'm going to start the daunting task of job hunting in Portland OR for a full-time staff job (any leads/introductions would be appreciated).

Also, I'm still waiting to hear if my 2nd appeal for Social Security will be accepted and if I'll be able to have another hearing. If it gets accepted and I win my hearing, I could get backpay for the time I was unable to work. If they don't accept my appeal, I just lose and get nothing. If they accept my appeal and the judge at my new hearing agrees with the judge from my first hearing, I lose and get nothing. I'm keeping my hopes up but am not counting on getting anything, especially with the current administration. This whole process has opened my eyes to just how messed up disability and Social Security is in this country, and once I get settled into my new life I hope to do some sort of advocacy or activism to help people with disabilities get work and live better lives. I have been disabled for 4 years but have not received a single disability payment, and the only reason I am not homeless is because I have parents who are willing and able to support me and let me live with them. Not everyone has this privilege, and a lot of people are one illness away from total financial ruin. I feel very lucky that things have turned out the way they have, and I don't take that for granted.

Thank you to all my friends and family who have stuck with me through this when it wasn't always the easiest. I see you, and I appreciate you more than you'll ever know!

Status Update June 3, 2016

Alright, this post is going to have a lot of updates, not really on my health, which hasn't changed since the last post, but more on other things going on in my life.

First, I got my Social Security hearing results and unfortunately the judge did not rule in my favor. So now I'm appealing that decision. My lawyer says it will take about 16 months to find out if I'll be getting a new hearing or if that decision will be deemed final. Oof.

Second, I'm leaving LA for good next week and am moving in with my parents in Seattle. This was something I was planning on doing whether I won the hearing or not. They're moving back to where I grew up in Oregon sometime next year, and I plan on moving to Oregon when they do, I'm just not sure where yet, likely with them for a bit in a Garden State/Lady Dynamite type of situation before I can save up enough money to live on my own again.

Third, I'm planning on spending my time in Seattle training myself to be a professional illustrator through a combination of online courses and in-person art classes. I've finally realized that my body and the film/video/tv production industry are no longer compatible, and I need to stop trying to find gigs that will accommodate me in an industry that's so physical and requires such long hours. Illustration is something that can be and often is done remotely, which is what I need. Until recently, I hadn't really drawn much since middle school - my mom says I stopped because I was sick of people asking me to draw things for them...?  I never considered it something I could actually do as a career until my friend Laura hooked me up with an illustration gig for Links of London that was totally legit! (----> check out Laura's awesome swimsuit line Novel Swim <----) But I've only taken a couple art classes since high school, and no art history classes, so I want to really get to know the medium (like I did with film in college) by studying the history and techniques, and also teach myself the software, so I can get real good and put together an impressive portfolio.

So, those are the updates. When I get to Seattle I'll find new doctors and start again on that front. Luckily it seems like Medicaid in Washington is a lot better than Medicaid in California. But we shall see!

On a final note, I just want to let everyone know that despite all this, I'm ok, and I'm going to be ok. I know that chronic pain often comes with depression, and a lot of people are worried about me, so I just want everyone to know that I'm not severely depressed or suicidal. Yes, I get sad and frustrated at times but I've learned not to dwell on the things I can't change. I often think of a nightmare I had once when I was younger when I became self-aware in the dream and screamed out "change the channel!" and it switched from a bad dream to a good dream. So I just try to do that in real life :)

I feel incredibly lucky that I have the support system that I have and that I'm able to move in with loving parents who would do anything for me. I know that a lot of people don't have that, and those are the people who fall through the cracks. Someday when I have my shit together, I hope to be able to help out people who don't have a support system like me. I also feel very lucky that I got to live the life I've lived thus far, going to college on the east coast, traveling around the world, living in New York and and working in TV. I feel like I've already lived one great life and am starting another, quieter life, as an artist, with a garden, back in the beautiful Pacific Northwest. So come visit!

Status Update March 30, 2016

I had my hearing for Social Security Disability yesterday. My mom came into town for it, which was really nice, and my lawyer flew in from New York for it. I testified at the hearing, answering questions from my lawyer and the judge, and they also had a vocational expert testify over the phone. The judge said he would take about 60 days to make a decision, so I won't know whether I'll be approved or denied until late May. My lawyer thinks it went well, so fingers crossed.

I also had my appointment with a neurologist that I've been waiting on for months. We met for about an hour and he examined me and looked over all my records and MRIs and concluded that I don't have a neurological issue. Which is good news, because neurological issues can be bad, and also bad news, because we still don't know what's causing my pain. The neurologist told me to go back to the pain specialist I've been seeing, who told me she was stumped at our last visit. I'm on Medicaid now, which Cedars-Sinai doesn't take, so I need to decide whether to go back to her and pay out of pocket, or try to find someone new through Medicaid.

So that's where I'm at. I'll post again in 60 days once I know whether I'm approved or denied for disability.

Status Update March 3, 2016

Just a quick update that I finally got a court date for my Social Security Disability appeal hearing - March 29. I won't say too much about it here, just that I really hope I win because I don't know what I'm gonna do if I lose.

Now that the trial is a real thing that's happening I've been worrying about it nonstop, so much that I sliced the tip of my pinky finger last week cutting mushrooms because I was distracted thinking about what I had to make sure to tell my lawyer. So now I'm trying to find the right balance between thinking about the trial so I'm fully prepared, and distracting myself with other things so I'm not constantly freaking out about it.

I also got a little bit of illustration work through a referral from a friend from college who liked my Barb Ross stuff, which was really awesome. It was just a few hours of work spaced out over a few weeks, but it was so great to be able to earn some money and especially to get paid to draw. I had to plan it out really carefully and spent a week resting before I did it and over a week recovering in a ton of pain after, but it was worth it.

I'll post again after the hearing, hopefully with good news. Fingers crossed.

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.