I spend so much time desperately looking for things online related to my chronic pain that I thought I would start to do regular round-up of things I’ve found. While the round-up was inspired by Dooce, and Rachel Held Evans, I made it into a list because I’ve been reading way too much Buzzfeed.
I’d like to say something very official like, “This will appear every Sunday,” but I don’t want to agree to anything just yet. For now, let’s just go with, “It will appear today” and see what happens.
And of course, just like there’s more to me than my chronic pain, there’s more to this list than chronic pain as well. Enjoy.
The National Pain Report says the FDA changing the status of the drug Hydrocodone to a Schedule II substance, from its current status as a Schedule III substance.
As someone who relies on the opiate to help me maintain my job, this causes me to pause. Specifically, the idea that doctors may not be able to change the dosage of the drug, although I’m not exactly sure how that would work.
The National Pain Report says if the drug is rescheduled:
“Patients must present a written prescription to the pharmacist for a Schedule II drug and physicians are not allowed to call in a prescription to the pharmacy. Schedule II drugs are limited to a 90-day supply, after which patients must visit their doctor to get a new written prescription. Pharmacists are not allowed to change the dosage, formulation or quantity prescribed of Schedule II drugs.”
And I know there is a good reason why the FDA is looking at this drug. The same article says:
“”Overdoses from painkillers such as hydrocodone now take the lives of more than 15,000 Americans each year, more than heroin and cocaine combined.”
And while even one overdose death a year would be too many, it is important for patients with pain to stay educated about these issues and advocate for their rights as well. After all, I know firsthand how quickly your life can be ruined without proper pain management.
Everyone from my boss to my medical doctor’s has tried to get me to try acupuncture, but I’m just not very interested in it. I looked it up online and when I read on Wikipedia that it was basically rooted in the idea of fixing the qi energy in your body, I figured it was on the same level as saying a really good prayer — yes it could work, but it’s not an exact science.
This article should probably be read with a grain of salt itself, but I have to admit I printed it out. I recently gave in to my medical doctor and scheduled an appointment for an acupuncture consultation in November (pain makes you try crazy things, all right?) and I’m planning to bring it along.
“The second part of Mao’s project was to provide Westerners with sensational evidence of Chinese medicine’s efficacy, particularly of acupuncture analgesia. The watershed moment was in 1971, when New York Times editor James Reston wrote an article entitled “Now, Let Me Tell You About My Appendectomy in Peking.” In it, he recounted how Wu Weiran of the Anti-Imperialist Hospital had administered “a standard injection of Xylocain and Bensocain” before removing his appendix. Later, while Reston recovered, acupuncture was used to relieve pain from post-operative gas. Eager to believe in mystical Eastern miracle workers, credulous Westerners misreported the story, claiming that acupuncture had been used as an anesthetic during Reston’s appendectomy, a falsehood that still has currency.”
Something that’s really, really helped me during the longs days of laying in bed wishing I were dead has been the amazing chronic pain groups on Facebook.
I especially like Chronic Perseverance. The moderator is a woman named Jenn, who, according to the “About” section, is an attorney and holds a Ph.D. in United States history.
She also suffers from Ehlers-Danlos Syndrome (EDS), dysautonomia, Mitochondrial Disease, stroke-like episodes, migraines, GI dysmotility, pulmonary disease, a weakened chest wall, and Hashimoto’s Thyroiditis, and other issues.
The site is unique because Jenn only posts quotes and pictures. And while there is a time and place for those in chronic pain to get together and share their struggles and victories, sometimes it’s nice to just read a quote from someone that seems to perfectly capture your daily struggle.
In fact, I like her page so much that I’ve set Facebook to send me a notification every single time posts anything at all. It means I’m nearly always the first person to “Like,” so she probably thinks I’m stalking her, but you know what they say, “Stalking is the most sincere form of flattery.”
Some of the recent quotes she’s posted that I really like, include:
“So often we try to make other people feel better by minimizing their pain, by telling them that it will get better (which it will) or that there are worse things in the world (which there are). But that’s not what I actually needed. What I actually needed was for someone to tell me that it hurt because it mattered. I have found this very useful to think about over the years, and I find that it is a lot easier and more bearable to be sad when you aren’t constantly berating yourself for being sad.” – John Green
“Once you start recognizing the truth of your story, you will recognize your worth. Things happen, but you’re still here and you are still capable and powerful. You are not your circumstance. You’ve made it through this far and as you go through adversities in life, just remember that you are still fully equipped with every single tool you need to fulfill your purpose.” – Unknown
I actually saw a link to this letter on Chronic Perseverance, and I think I’ve seen it linked on Facebook before. It was written in 2009, but it perfectly applies to my life today. If you’re enduring chronic illness, or someone you love is, I beg you to read this letter.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
This Ted Talk is short, sweet and all about how the nervous system can get effed up. Wile Krane doesn’t really talk about how to fix chronic pain when nervous system misfires, he does do a good job explaining of how it happens.
“We think of pain as a symptom, but there are cases where the nervous system develops feedback loops and pain becomes a terrifying disease in itself. Starting with the story of a girl whose sprained wrist turned into a nightmare, Elliot Krane talks about the complex mystery of chronic pain, and reviews the facts we’re just learning about how it works and how to treat it.”
Also, please don’t turn me into a pillar of salt for saying this, but I think the rainbow at the end of the chapter is a bit, well, clichéd. I would either just lose it altogether or maybe come up with some other sign of your eternal covenant with Noah.
8. Of course, what list would be complete without a list of my 3 favorite Buzzfeedlists from the week?
Yesterday — partly because of my own stupidity and partly because the only pharmacy in Byron, Il closes at 7 p.m. — I had to go off hydrocodone cold turkey.
And it was hell.
I ran out on Wednesday evening and I immediately went over to the pharmacy to ask them to call in a refill. But, the doctor’s office was already closed. So they said they couldn’t refill it until the next day.
No big deal. I could make it through the night. And I didn’t want to make a big deal of it and come off like a crazy drug addict.
So, back home I went.
And normally going one night really wouldn’t be that bad, because I take a pretty strong drug to make me fall asleep every night.
But the thing is I had to go into the office the next day. On no pain drugs. And, because my office is two hours away, that meant I wouldn’t get home in time to pick up the prescription before the pharmacy closed for the night.
My mom ended up driving me into work because I have realized that the two-hour drive each way makes me suicidal.
Even with her help, going off the hydrocodone cold turkey was still enough to almost kill me.
When I got to work I headed right for the bathroom, because I had buckets of diarrhea shooting out of me.
My palms were sweating and my rib pain was intensifying.
I lived through that and went to a morning meeting.
After that, I had planned to go to lunch with my mom, but suddenly my boss decided she wanted to take our team out to lunch so all of a sudden I had to look professional for a two-hour business lunch while I was in opiate withdrawal.
I popped some Tylenol hoping they would help take the edge off.
After I got back from the lunch I told my editor that’d I be over to his office in a bit to talk after I finished up some work at my desk.
Then, I ran to the bathroom. More diarrhea.
I was so weak, and my muscles hurt so bad that I just sat on the toilet with my jeans around my ankles, leaned my head against the blue bathroom stall, and prayed to die.
I got myself together, pulled up my pants, washed my hands and made it back to my desk, where I laid on the floor, resting my head on my puffy pink coat, until I could find the will to stand up again.
When I finally walked over to my editor’s desk to talk about the newsletter, so much time had passed that he said, “Wow, you must have had a lot of work to do. I thought you might have left for the day.”
We chatted for a bit, and then I ran back to the bathroom. More diarrhea.
I wanted to go to the hospital so bad. My ribs hurt like hell. My body ached all over. And I just wanted to be dead.
I thought about laying on the floor by my desk in the fetal position and making my mom come up to the office to get me.
But I didn’t.
Instead, I gathered up all the strength inside me, and got my things together so I could go home for the day.
As I walked over to say goodbye to my boss, I thought maybe I had at least pulled off giving him the impression that everything was fine. But when I told him I was leaving, he said, “Wow, it looks like you barely made it through the day.”
I tried to sleep on the way home, while my mom drove, but I was in so much pain that I wouldn’t really call it sleeping. Needless to say we didn’t make it home in time to get to the stupid pharmacy before they closed at 7 p.m.
And so, I had a long night ahead of me.
I tried to go to sleep as soon as I walked in the door, but every single joint in my body hurt.
It felt like a knife was in my ribs, and pain was radiating through my bones. I kept having to run to the toilet because of the diarrhea, but there was nothing left inside of me to come out.
I prayed for relief.
I prayed with all my heart that God would let me die that night. That he would take my life. That I would finally get the true relief I’ve been seeking for months and I would get to go to heaven.
I begged God for this to end.
My ankles felt simultaneously swollen, sprained and twisted. It felt like I had full-on tendonitis in my wrists. My body felt broken — all over.
And I didn’t think I would make it through the night.
I tossed and turned all night.
I thought about suicide. I thought about how much I hate hydrocodone.
I thought that once it got out of my system I would never go back on it.
But even as I thought it, I immediately knew it was a lie.
I knew I would go back on it the very second I got a refill in the morning. I knew because while my whole body was attacking me, there were my right ribs, screeching at me, haunting me, reminding me that I needed the hydrocodone.
My amazing mom drove to the pharmacy this morning to get my refill, and when the new dosage kicked in, I finally felt like I could breathe again.
I don’t want to be on this stupid drug. I really, really don’t. I hate that half the doctors I see accuse me of being a drug addict. I hate the I have to constantly wonder if I am a drug addict.
But more than that, I hate living my life feeling like I’ve just been stabbed in the ribs.
Some people out there might choose to forego the hydrocodone so they could avoid being on an opiate. Some people out there might be strong enough to preserve through this horrible, horrible intercostal neuralgia pain without strong pain pills. And, some people out there might be able to live like that.
I am not one of those people.
Quality of life matters to me.
Having even a few hours a day when the pain is at a minimum is important to me. And if that means my body is physically dependent on a federally regulated opiate, then so be it.
All I can tell you is that the pain that stabs through my right ribs every single day of my life really is that bad.
Yesterday was awful. I was working from home and I managed to stay with my laptop until about 3:30 p.m., but then, after that, I just laid in bed and watched hours and hours of TV while I prayed for the Hydrocodone to work. But it never really did.
Today was sort of alright, so I took a shower. I know. Crazy, right? To be honest, I’m pretty much at a stage in my life where I only shower two or three times a week. All the effort and the moving my right arm to wash my hair just seems to make my ribs hurt more, and it’s just not worth it to put myself through that every single day. I used to at least put dry shampoo in my hair on the off days, but that stuff doesn’t really work that great, so I’ve pretty much given up on that now too. Instead, I just throw my hair up in a bun.
It’s called: Working from home.
I do shower the one day of the week I drive into the office, or when I’m traveling for business. Obviously. Gawd, people, I have some standards.
Speaking of work, I’m flying to Atlanta tomorrow to go to the National Convenience Store Show. It’s my third business trip in six weeks. After this though, I should be in Illinois for the rest of the year.
My boyfriend’s technically from Atlanta, although he only spent five years of his life there. I spent four years of my life in Macomb, Illinois going to WIU, but I barely even remember how to get there. He, however, still roots for the Atlanta Braves like they’re his hometown baseball team. I think it’s because the Cubs (his second favorite team) well, let’s just say they have problems winning and stuff.
Anyway, I miss my boyfriend. Lots. We are still managing to see each other at least once or twice a week, but the long distance thing sucks. Lots.
And my ribs still hurt. I think deep down he’s still hoping I’m going to get “cured” but that’s looking less and less likely.
I did get in to see a doctor at the University of Wisconsin-Madison recently.
It’s university-level care, so it should be top notch. He was pretty cool, and he didn’t seem overwhelmed by my case, so I’m going to stick with him for awhile.
He referred me to their pain specialty department, but they won’t even make an appointment to see me until they get all my medical records from Loyola. It’s been three weeks and Loyola still hasn’t sent the records though. So I’m basically in holding pattern.
And I’m spending my days trying to space out my hydrocodone waiting to see a pain doctor who hopefully won’t freak out about me being on opioids. The last two refills I got on that drug have been from primary care doctors and both of them have been super weary about giving it to me.
They’re all “You take four a day? EVERY day???!!” And I’m all, “Yes. When I said level 8 or 9 pain every day, I wasn’t joking.”
And let’s be honest. If only need four in a day, I’m having an AWESOME day.
On aside, my new doctor did say my symptoms were very severe for someone with intercostal neuralgia. He said he thought I might have Complex Regional Pain Syndrome (CRPS) in my ribs, although he followed that up by saying that CRPS is usually only in your arms or legs. And everything I read online seems to confirm that, so I’m not sure how correct that was.
He also added a new medication to my list of prescriptions, but it doesn’t seem to be helping much. Although it’s one of those long-term meds, so it takes at least a month before you know if it’s working.
And, as of right now, the pain is still horrible.
I was having a hard time eating yesterday because I was in so much pain, and I turned to my mom and I said, “Well, I guess I have good days and I have bad days.”
And she said, “What’s a good day look like? I don’t think I’ve seen one of those.”