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!