tag:blogger.com,1999:blog-17232605628016569162024-03-08T14:02:13.019-08:00Kathleen's Costochondritis Updateskathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-1723260562801656916.post-2942448257344803232017-06-06T10:13:00.000-07:002017-06-06T10:13:44.846-07:00Status 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 <a href="https://en.wikipedia.org/wiki/Low-dose_naltrexone" target="_blank">Wikipedia page</a> for non-science people like me who want more info, and there's also an <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/" target="_blank">article on the NIH website</a> about it for those who want more details about the science behind it.<br />
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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.<br />
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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.<br />
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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: <a href="https://www.youtube.com/watch?v=pgCfkA9RLrM" target="_blank">https://www.youtube.com/watch?v=pgCfkA9RLrM </a><br />
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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.<br />
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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.<br />
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).<br />
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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.<br />
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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!kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com3tag:blogger.com,1999:blog-1723260562801656916.post-17776588622154473952016-06-03T12:42:00.001-07:002016-06-03T12:42:03.721-07:00Status Update June 3, 2016Alright, 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.<br />
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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.<br />
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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.<br />
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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 <a href="http://www.novelswim.com/" target="_blank">Novel Swim</a> <----) 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.<br />
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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!<br />
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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 :)<br />
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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!<br />
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kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com7tag:blogger.com,1999:blog-1723260562801656916.post-9672262561886676322016-03-30T13:53:00.000-07:002016-03-30T13:53:46.764-07:00Status Update March 30, 2016I 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.<br />
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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.<br />
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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.<br />
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<br />kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-72345678118566489922016-03-03T11:24:00.001-08:002016-03-30T13:32:21.530-07:00Status Update March 3, 2016Just 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.<br />
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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.<br />
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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.<br />
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I'll post again after the hearing, hopefully with good news. Fingers crossed.kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-47601656879202166872015-11-19T16:26:00.000-08:002015-11-19T16:26:10.080-08:00Status Update November 19, 2015Well, 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.<br />
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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:<br />
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Flexeril (muscle relaxer)</div>
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Lorzone (muscle relaxer)</div>
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Venlafaxine (SNRI)</div>
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Marinol (the legal prescription type of weed that's been around for decades)</div>
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CoQ10 (supplement)</div>
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Alpha Lipoic Acid (supplement)</div>
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Turmeric (supplement)</div>
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Dextromethorphan (main ingredient in cough syrup)</div>
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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.</div>
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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. </div>
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I recently <a href="https://www.youtube.com/channel/UCVW6P_HaOWl217UbqnWSXCQ" target="_blank">started a YouTube Channel</a> 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.</div>
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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!</div>
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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.</div>
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Here's a video that represents my relationship with doctors:</div>
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<iframe frameborder="0" height="288" src="http://media.mtvnservices.com/embed/mgid:uma:video:mtv.com:469115/cp~series%3D1148%26id%3D1668855%26vid%3D469115%26instance%3Dmtv%26uri%3Dmgid%3Auma%3Avideo%3Amtv.com%3A469115" width="512"></iframe><br />
<div style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 12px; margin-bottom: 0px; margin-top: 4px; padding: 4px; text-align: left;">
Get More:
<a href="http://www.mtv.com/artists/jay-z/" style="color: #439cd8;" target="_blank">Jay Z</a>, <a href="http://www.mtv.com/videos/jay-z/469115/on-to-the-next-one.jhtml#id=1668855&vid=469115" style="color: #439cd8;" target="_blank">On To The Next One</a>, <a href="http://www.mtv.com/music/" style="color: #439cd8;" target="_blank">Music</a>, <a href="http://www.mtv.com/music/video/" style="color: #439cd8;" target="_blank">More Music Videos</a></div>
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kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com1tag:blogger.com,1999:blog-1723260562801656916.post-47004776140665718892015-03-03T19:08:00.003-08:002015-03-03T19:08:34.190-08:00Status 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.<br />
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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.<br />
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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.<br />
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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!kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-69464811918228874722015-01-05T11:53:00.000-08:002015-01-05T11:53:03.072-08:00Status Update January 5, 2015This 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.<br />
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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.<br />
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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.<br />
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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 <a href="http://kathruss.com/" target="_blank">website</a> and <a href="http://www.linkedin.com/in/kathruss" target="_blank">LinkedIn profile</a>.kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-82555895439653577382014-09-17T10:27:00.000-07:002014-09-17T10:27:42.796-07:00Status Update September 17, 2014Not 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?<br />
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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!kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-38995869460822511922014-07-16T07:43:00.001-07:002014-09-17T10:07:56.187-07:00CHRONIC painSo, 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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Song for today:<br />
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<br />kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com1tag:blogger.com,1999:blog-1723260562801656916.post-80008957998870836612014-06-27T08:11:00.001-07:002014-06-27T08:11:45.044-07:00Status Update June 27, 2014Well...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.<br />
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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.<br />
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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.<br />
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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 <a href="http://kathleencosto.blogspot.com/2014/05/treatments-medications-ive-tried.html" target="_blank">have tried dozens of different types of treatments</a>, 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.<br />
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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.kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com1tag:blogger.com,1999:blog-1723260562801656916.post-16061849466440109572014-06-07T05:44:00.000-07:002014-06-07T05:44:20.545-07:00Shots!Today's theme song:<br />
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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 :)<br />
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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.kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-63463448976663642692014-05-30T11:42:00.001-07:002014-06-02T05:59:26.709-07:00Status Update May 30, 2014I spent the day yesterday in the ER at NY Methodist (which may be the worst place in the world) because of some bad side effects from one of the meds I'm taking. I laid on a gurney in a busy hallway for an hour, then got put in a bay and waited another hour and a half before I was seen by a nurse, which is par for the course at this hospital. The woman I was sharing a bay with was there for a heart issue and wasn't seen for 2 hours. The ER is filled with the noises of people constantly yelling and screaming, and the only reason I was finally seen by a nurse was because I screamed out I NEED A NURSE at the top of my lungs. Good times. I'm feeling a lot better today though, and so happy to be home and not there. Much love and thanks to Pete, Alice and Rachel for coming and taking care of me and being my advocates.<br />
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On Wednesday I had an appointment with my pain specialist, where we reviewed an MRI of my thoracic spine that she had ordered. Previously I've had an MRI of my chest, where inflammation was found at one of my costochondral junctions, which my doctor says is where the rib connects to the spine. This MRI showed facet arthrosis in my mid/lower spine, most pronounced in T10-T11, which is where the inflammation was seen in my other MRI. My doctor says facet arthrosis is fluid buildup along the spine, which is something that happens in younger people as a result of inflammation. So she wants to try doing another shot of steroids directly into the spine where that fluid is, with the hope being that it is the source of the pain that radiates all the way around my ribs. Previously I got injections in the front left side of my ribs, and on each side along my back, but I haven't gotten any along the spine yet. So, it's promising, but I am still skeptical because every injection I've gotten up until now has caused me nothing but extreme pain. Now all I have to do is pick a day that I want to be in a lot of pain and make an appointment! I'll post an update once I've gotten the injections.<br />
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In the mean time, I'm still slowly building up to the full dosage of Cymbalta. It's taking me awhile because I'm really prone to nausea, but hopefully I'll be up to the full dose in 2-3 weeks. As of now, no change in my pain, but that's to be expected because I'm not at the full dose yet, and it can take a month to take full effect.kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-60686097450982441332014-05-24T12:40:00.001-07:002014-05-24T12:51:36.369-07:00Status Update May 24, 2014Right now the main doctor I'm seeing is a pain specialist, who I've been seeing since the beginning of April 2014. In April she gave me two rounds of intercostal nerve blocks, which are 6 injections in my back of a steroid and anesthesia meant to kill the nerves that go between my ribs, from the back to the front. Anyway, they didn't work, just caused me a lot of pain on the day I got them.<br />
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At my follow up appointment she suggested I get an implant - a spinal cord stimulator, which would have to be implanted surgically and would involve a week of having it attached to me by wires in my back with open wounds prone to infection while I try it out. I wasn't too keen on the idea, so instead I asked to try some of the meds that I've had suggested to me but haven't tried yet.</div>
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So now I'm trying a higher dose of Cymbalta, because apparently the dosage I tried before isn't typically what is used for pain management. The Cymbalta has made me really nauseous so I'm having to build up to the high dosage slowly over the process of a couple weeks, which is what I'm doing now. Also when I'm not too nauseous I'm doing some postural restoration exercises given to me by a great physical therapist in Portland OR (let me know if you're ever there and need a recommendation). I just got custom orthotics for my shoes as well and they're awesome. I'm very normcore these days.</div>
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I also have a prescription for a TENS unit, I just need to do some more research on where to get it then I'll pick one up. Once I'm used to Cymbalta my doctor wants to try adding Lyrica, a fibromyalgia medication, and see how the two drugs work together. My next appointment is on Wednesday. </div>
kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-87179558016257186332014-05-24T08:29:00.000-07:002014-09-03T09:41:28.962-07:00Treatments & Medications I've tried<div>
These are all things that I've tried that have not worked:</div>
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Treatments:<br />
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<ul>
<li>Physical Therapy</li>
<li><a href="http://en.wikipedia.org/wiki/Graston_Technique" target="_blank">Graston Technique</a> (I do not recommend this. So painful.)</li>
<li>Acupuncture</li>
<li>Six Food Elimination Diet (to rule out food allergies)</li>
<li>Cortisone injections</li>
<li>Intercostal nerve blocks</li>
<li>Spinal injections</li>
<li>TENS unit</li>
</ul>
Medications:</div>
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<ul>
<li>Ibuprofen</li>
<li>Omeprazole</li>
<li>Naproxen</li>
<li>Celebrex</li>
<li>Celexa</li>
<li>Cymbalta</li>
<li>Voltaren gel</li>
<li>Lidocaine 5% patches</li>
<li>Gabapentin</li>
<li>Xanax</li>
<li>Tylenol #3 with Codeine</li>
<li>Zorvolex</li>
</ul>
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I've seen 3 General Practitioners, 2 GI Specialists, a Physiatrist, 2 Physical Therapists, a Chiropractor, a Rheumatologist, and 2 Pain Specialists. I've had 2 normal x-rays, numerous normal blood tests, a normal endoscopy, a normal ultrasound, and an MRI that showed inflammation at one of my pain points, diagnosed as costochondritis.</div>
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kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com0tag:blogger.com,1999:blog-1723260562801656916.post-9894909696117509332014-05-24T07:48:00.000-07:002014-05-24T07:48:45.847-07:00What's wrong with Kathleen? What is costochondritis?In early April of 2013, I started getting sharp pain in my lower ribs, on both sides of my ribcage, in the front and the back. After having a normal ultrasound and endoscopy, I was diagnosed with costochondritis.<br />
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What is costochondritis, you may ask? It's an inflammation of the rib or the cartilage that connects the rib to the breastbone. You can learn more about it at the <a href="http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454" target="_blank">Mayo Clinic's website</a>. Luckily costochondritis isn't life-threatening, but there is no known cause, and no known cure or treatment for it. It mostly affects women, and there has never been a controlled medical study for it. Usually it goes away on its own after a few weeks or months, but it can also be chronic. I've seen posts on forums from people who have had it for over a decade.<br />
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<br />kathleenhttp://www.blogger.com/profile/14551520505122978293noreply@blogger.com2