I grew up in the dawn of this new century when the dangers of
recreational drugs were starting to surface. You couldn't go a month in health
class without being shown diagrams and statistics of the horrible life you
would surely lead if you even sampled any of this illegal street fare.
I remember debating with a fellow 13 year old about marijuana. I
couldn't tell you a pot plant from a dandelion but I fought my case with conviction
that smoking the poison would surely ruin life as you knew it!
As we got older the drugs we were warned against suddenly got
equally deadlier and more accessible. We were signing pledges to not sniff
aerosol cans, overdose on cough medicine, or mix up a big ol' batch of meth
with household cleaners.
All the while I was at home popping narcotics to ease the pain
from my interstitial cystitis. I’m sure high school health classrooms everywhere
now have life size posters with giant red slashes warning this decade’s kid
against the very drugs I was regularly taking… I should point out, after taking heavy
narcotics for 10 years I still don’t get the allure of taking them just for fun…
My pain meds have always been closely monitored by my mom. (She
must have heard the thing about taking one pill and next thing you know you're
living on the street next to a hooker named Davenport.) We had long
discussions weighing the good and bad before every dose I took. She never let
me stay home alone when I was "under the influence" and she kept my
medicine bottles in her bathroom. It wasn't that she didn't trust me... It was
just that... Well I'm not sure... There was definitely a good reason.
Over the last 10 years and 20 surgeries I have been on Vicodin,
Percocet, Dilaudid, Fentanyl, Morphine, and even had an Opium suppository
before a DMSO treatment. Thanks to my Mom’s incessant lectures and
completely thought through decisions I learned to respect the drugs, not to
take advantage of them, to use them sparingly and only when absolutely
necessary.
Five years ago after an especially treacherous surgery, I
stopped taking pain meds suddenly when the pain seemed better and I had three
days of intense withdrawals. Hallucinations, vomiting, shivering, sweating, the
whole shebang. I have also learned to wean.
Through all the years of taking different pain medications I had
never found my perfect narcotic match. The drug that I could carry around and
take in case my pain appears out of nowhere and a shower is not accessible. The
pill that I could take without taking an antinausea pill or vomiting. The
medicine that takes the edge off but doesn't make me fell fuzzy and
drugged.
Until now! It’s called Nucynta… Of course it's pretty expensive
and so new that there isn’t a generic yet but it's magical and totally worth it!
It doesn't make me nauseous or constipated. It helps the pain without sending
me directly to sleep. It does make me feel a bit drugged but I can manage to
still do most things. (I haven't tried driving while on it yet, for the safety
of others!)
I had another cystoscopy with hydrodistention and Botox
procedure on Monday and it’s been an expected hard recovery. The pain in my
urethra from the catheter has been excruciating and my sad bladder just aches
from being poked, prodded and literally stretched beyond capacity! BUT,
thanks to my new wonder meds its actually been tolerable.
I am in no way advertising the glories of narcotics! I hate them.
I take them as seldom as possible. Unfortunately there are times in an IC
captured life that pain medication is a necessary evil. This particular blog is
really just for my fellow IC sufferers that struggle with pain as a main
symptom. Debating the merits of narcotics isn't an enjoyable topic for me but I
have to share the news about this drug in the hope that it will help others the
same way it has helped me.
Side note… I was telling my sister about this blog post and she
asked why I named it Crack is Whack. I replied smartly that it was about drugs.
She then informed me crack is a specific type of drug… who knew? I thought
crack was just a term for drugs… Apparently I didn’t pay that close of
attention in Health class… Anyway it’s still a fun title…
When we deal with so much pain, it is difficult. I'm glad you found something that works for you. Thanks for sharing!
ReplyDeleteI am just starting out with the pain meds. My IC dr will not perscribe me anything higher than IBprofin (which actually causes me to flare). My family dr has taken over my treatment and so far I am taking the Elmiron 3xd, Lortab 7.5 2xd, and since they diagnosed me with Fibro, they added Neurontin 2xd. And it isnt working. I am so tired of being in pain. It doesnt matter if I follow my diet to a T, the flare is there and my Fibro kicks my arse. I just wish that we could skip the lets see what works to something that they KNOW will work. I dont think that my family dr would perscribe me what you are on just because he is very old fashioned (I think). My question is how do I ask for something stronger without being looked at as a druggie?
ReplyDeletethank you for this blog I just found it by accident. I've suffered with ic for about 12 yrsbut dideny know it,it went misdignosed until febuary of 2010..mine is a severe case and my worst symtom is the pain. I've don't triiger point injections,internal injections along with internal physical therapy,the internal injections with pt,only.helped a little,only with urgency and fruence,not my pain,bfore my insurance stopped my treatments my old uro discussed internal botox,then had to switch uros,so he's sending me back to internal pt,found out when he did my internal exam I now have severe scarring adhesions down there and every surgery I've had other reason I got severe scarring inside and out. I'm on a muscle relaxer,elmiron,and amitripyline and then well see how that goes I got that med from pain clinic, I see him.again in 6 monthes,but it probally will be sooner. Then I might have the dsmo cocktail, and consider internal botox.
ReplyDeleteThanks for reading, I am so so sorry that your struggling with this horrible disease! I am totally here for you if you have any questions or even just need to vent! Please don't be shy! By the way... I would try the botox before the dmso, go to my treatment blog to read about my experience with dmso... pure misery! BUT, the weird thing about IC is what works for one person flares another and vise versa so it's always worth a try!
DeleteI also have pelvic floor disorder and myofasical sundrome. I go the bathroom up to 30 times a day,nothing so far has touched my pain. I can barely function. Trouble walking,sitting or standing.
ReplyDeleteI just found out I have IC last Monday...more upsetting than that is that I was going through my medical records and discovered that my dr (at that time) had referred me to a urologist and dictated that he thought I had IC back in 2006!!! and I have never been tested for it! My sickness started in 2003, abscess mass on my left ovary embedded in my colon, 10 day hospital stay, woke up after surgery with staples all the way across me, took my left tube, ovary, and appendix bc there was a tumor on it (which turned out to be endometriosis) I have also had approximately 15 UTI's in one year and 75 kidney stones, which 45 of them were removed at one time in a research study at Duke University in 2009, I have had 23 surgeries, 3 c sections diagnosed with adhesive disease... developed anxiety/panic disorder and very depressed. My pain is chronic, never goes away. In 2008 I told my mother I was going to the Emergency Room and was not going to leave until they found out what was wrong with me! The ER doctor gave me pain meds, did yet another CT Scan...ofcourse showed the stones but none obstructing so she told me I was a pain pill seeker and red flagged my record, told me to get out of the bed and go home so she could treat someone with real problems...Yes, true story, she had me convinced..since 2008 I have continued to suffer with lower right pelvic pain, cannot empty my bladder, uti, uti, uti...on and on...I then thought I was just crazy...I am on my heating pad as I type, on the elimination diet...starving and have had 3 bladder installations in the past week which has not even touched it...I am already educated on a lot with urology due to the kidney stones...btw which my disability went through in 2010 for but none the less still red flagged as a pill seeker! I have went through so many emotions over the past week or so..but mostly ANGER...you would think I would be relieved that I am not crazy, I have a name for it!~ No, I cry harder and am so angry that I trusted this ONE DUMB DOCTOR when my pain would keep me from taking my kids to the zoo! Thank you for your blog, I actually smiled at the one about "IT"....There absolutely needs to be more AWARENESS about this horrible disease, I have lived it for atleast 6 1/2 years unknown and treated wrong, I have known about it for a week...so much to process, we all need to stand strong and make blue awareness as big as pink awareness!
ReplyDeleteOh my goodness, I cannot even imagine going through the misery of IC without knowing what it is and unable to even attempt to treat it! Wow. I'm sure you are angry, scared, depressed, overwhelmed, stunned, ect....
DeleteI am totally here for you, even if you just need to vent or need advice or whatever! Feel free to find me on facebook. There are lots of support groups and pages for IC on there too!
Hope you're starting to feel better and maybe making headway trying to find the perfect treatment for you! :o)
I tried to post a comment earlier and it didn't seem to go through, so if this posts twice, please forgive. I just wanted to rant that it really makes me mad that they are allowing the criminals to dictate healthcare policy, and not the Dr.'s and patients needs. That is whacked imho. BTW, is this medicine still working for you? I am building up a tolerance to what I'm currently taking and I'm FREAKING out about what is going to happen once it stops working altogether. I can't function without it, the pain is so bad. The insides of my thighs are a permanent red/purple because I am under the heating pad so much....
ReplyDelete