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!
Wednesday, September 17, 2014
Wednesday, July 16, 2014
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:
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:
Friday, June 27, 2014
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.
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.
Saturday, June 7, 2014
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.
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.
Friday, May 30, 2014
Status Update May 30, 2014
I 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.
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.
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.
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.
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.
Saturday, May 24, 2014
Status Update May 24, 2014
Right 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.
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.
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.
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.
Treatments & Medications I've tried
These are all things that I've tried that have not worked:
- Physical Therapy
- Graston Technique (I do not recommend this. So painful.)
- Acupuncture
- Six Food Elimination Diet (to rule out food allergies)
- Cortisone injections
- Intercostal nerve blocks
- Spinal injections
- TENS unit
- Ibuprofen
- Omeprazole
- Naproxen
- Celebrex
- Celexa
- Cymbalta
- Voltaren gel
- Lidocaine 5% patches
- Gabapentin
- Xanax
- Tylenol #3 with Codeine
- Zorvolex
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.
What'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.
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 Mayo Clinic's website. 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.
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 Mayo Clinic's website. 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.
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