It just started a torrential downfall of epic proportions. If it floods again, I'm going to spaz.
Last night at work I started having chest pains, shortness of breath, all that jazz. I think it was the onset of a panic attack, which I managed to avoid with some deep breathing.
I'm not as sore from injections today, but I still have pain. It's a little more crampy than usual, but it's there. Ugh.
Saturday, June 26, 2010
Thursday, June 24, 2010
POPPS Procedure - I Miss Fentanyl Already
I had my POPPS procedure today. First, yesterday they called me to move me up an hour, so I had to be there at 8 instead of 9. They were running late, though, and I napped in my gown with my IV started until they came to get me for the procedure at 10:45. Ugh. Erin was there (my physical therapist). I think that was good for both of us. I know she wanted to meet Dr. Wasudev (pronounced woss-uh-day), and it was helpful to have someone in the room who sees me weekly and knows where my trigger points are.
When they first started my IV in the room-before-the-room, I asked what they were going to give me. The nurse told me two things, and I said, "Can I have fentanyl?" She said I could ask them. AND THEY GAVE IT TO ME! Who knew - all you have to do is ask for the good stuff. Fentanyl is the drug that lasts the longest for me. I had it for my colonoscopy in July 2008 (fun fact: Blogger doesn't recognize fentanyl or colonoscopy as words - really?). That was back when I was on Vicodin (doesn't recognize that word, either) every two hours, but I didn't need a pain pill for 12 hours after that.
When I got home from the procedure, I had a bit of soreness at the lower left quadrant injection site (close to my shingles scar and close to where the left ovary is), but that was it. No other pain. I was hoping it would last, but I can tell the fentanyl is wearing off and my old pain is coming back. Dr. Wasudev said it would take about 3 days to get the full effects of the injections, so I'm hopeful.
Oh, but I'm pretty sure some of those needles went up my ass. Yay. The injections were a mixture of lidocaine and epinephrine. OK, lidocaine is not recognized, but epinephrine is. Guess a lot more people blog about epinephrine.
When they first started my IV in the room-before-the-room, I asked what they were going to give me. The nurse told me two things, and I said, "Can I have fentanyl?" She said I could ask them. AND THEY GAVE IT TO ME! Who knew - all you have to do is ask for the good stuff. Fentanyl is the drug that lasts the longest for me. I had it for my colonoscopy in July 2008 (fun fact: Blogger doesn't recognize fentanyl or colonoscopy as words - really?). That was back when I was on Vicodin (doesn't recognize that word, either) every two hours, but I didn't need a pain pill for 12 hours after that.
When I got home from the procedure, I had a bit of soreness at the lower left quadrant injection site (close to my shingles scar and close to where the left ovary is), but that was it. No other pain. I was hoping it would last, but I can tell the fentanyl is wearing off and my old pain is coming back. Dr. Wasudev said it would take about 3 days to get the full effects of the injections, so I'm hopeful.
Oh, but I'm pretty sure some of those needles went up my ass. Yay. The injections were a mixture of lidocaine and epinephrine. OK, lidocaine is not recognized, but epinephrine is. Guess a lot more people blog about epinephrine.
Wednesday, June 23, 2010
PT Update
All this standing around in heels for the funeral and visitation really did a number on me. I took the morning after the funeral off to recuperate, but I probably should've taken longer.
I had a bad flare-up over the weekend and had to take one of my pills, but other than that I've just noticed a lot of tightness. My abs were a mess at PT, especially on the sides. We're doing pool work again next week. Hopefully that will help.
Friday I had another eye stinging incident, and I've had intermittent bad pressure headaches. Hopefully that's all done with.
I had a bad flare-up over the weekend and had to take one of my pills, but other than that I've just noticed a lot of tightness. My abs were a mess at PT, especially on the sides. We're doing pool work again next week. Hopefully that will help.
Friday I had another eye stinging incident, and I've had intermittent bad pressure headaches. Hopefully that's all done with.
Saturday, June 19, 2010
I'm Gonna Go All Gollum on This ER: IT BURNS US!
I had another incident of eye burning today, but this one occurred while I was driving on the interstate. I couldn't keep my eyes open and was crying frantically while trying to find a spot to pull over (it was where 65 and 40 meet). They said my eyes looked great, but of course I was in the waiting room for so long that the stinging had stopped by the time I saw the doctor - again it took about 2 1/2 hours. I'm supposed to follow up with an eye doctor, but I don't have vision insurance because I have perfect vision. Fuck a whole bunch of this. Ha. I typed "fuck" instead of "bunch" and had to backspace. At least I didn't type gibberish and have to backspace.
Thursday, June 17, 2010
I'm Dizzy, Must Be Thursday!
I'm dizzy again, just like last Thursday, and the Thursday before that, and the one before that...you get the idea. I'm going to go ahead and say I'll be dizzy next Thursday because I'm getting sedated. HELLS YEAH!
Not much going on in the pain department. Same as usual. A few pains a little higher up than usual, and some intermittent chest pain on the left side, but other than that, it's been the usual. Considering the family crisis, I'm impressed by stress hasn't screwed everything up to umpteen degrees like it usually does. I suppose we shall call that progress.
Not much going on in the pain department. Same as usual. A few pains a little higher up than usual, and some intermittent chest pain on the left side, but other than that, it's been the usual. Considering the family crisis, I'm impressed by stress hasn't screwed everything up to umpteen degrees like it usually does. I suppose we shall call that progress.
Tuesday, June 15, 2010
"She's a Cook, but She Talks Like a Nurse"
Yep, that's what my new doctor said about me today. He wants to start doing steroid injections next week. Well, he wants to start this week, but I have to work. They usually do 25-30 injections each sitting. I'll be sedated. I'm going to ask for fentanyl. No, I'm not kidding. If the injections don't work, at least I'll feel better from the sedation.
The physical exam was awful. WARNING: THE NEXT SENTENCE IS ABOUT MY ASS. I had an extreme amount of pain with the rectal exam, which is the first one I'd had in about a year and a half. I had the normal pain with the pelvic exam as well.
He calls it POPSS syndrome - pain over the pubis and surrounding structures. Yeah. I think that's just a way to come up with a cute acronym. I have an acronym, too: PAIN syndrome. Pain Always Indefinitely Now! See! I can be cute, too!
The exam made me cry. That's only significant because when I got home later and cried, my eyes felt like they were on fire. It was as though the burning/stinging pain from my hands on Sunday had moved up to my eyes. I still have the stinging sensations in my hands, forearms, and calves intermittently, but when my eyes were open, it felt like my eyeballs were being flushed with rubbing alcohol. I had to lie down with my eyes closed applying a cold compress for TWO AND A HALF HOURS before the pain was gone. That made calling to cancel PT loads of fun - glad Michael was there to dial for me.
The physical exam was awful. WARNING: THE NEXT SENTENCE IS ABOUT MY ASS. I had an extreme amount of pain with the rectal exam, which is the first one I'd had in about a year and a half. I had the normal pain with the pelvic exam as well.
He calls it POPSS syndrome - pain over the pubis and surrounding structures. Yeah. I think that's just a way to come up with a cute acronym. I have an acronym, too: PAIN syndrome. Pain Always Indefinitely Now! See! I can be cute, too!
The exam made me cry. That's only significant because when I got home later and cried, my eyes felt like they were on fire. It was as though the burning/stinging pain from my hands on Sunday had moved up to my eyes. I still have the stinging sensations in my hands, forearms, and calves intermittently, but when my eyes were open, it felt like my eyeballs were being flushed with rubbing alcohol. I had to lie down with my eyes closed applying a cold compress for TWO AND A HALF HOURS before the pain was gone. That made calling to cancel PT loads of fun - glad Michael was there to dial for me.
Bam Bam Bam Bam, Ba-Bam Bam Bam Bam, I Wanna Be Sedated
I looked up my new doctor online, and apparently he's a surgeon. This would've been useful to know at some point sooner than T minus 10 hours to appointment time. The good news is if he does injections, they come with IV sedation (according to the Web site). SCORE! If I could just be sedated all the time, I wouldn't be in pain. Sedation every two weeks...sounds like I'm going to need a designated driver.
Woke up at about a 7 today, got to work and took half a pain pill, and the rest of the day wasn't too bad. Had a few flare-ups but nothing major. Also, I'm not sleeping worth a damn. In theory, something is getting called in to the pharmacy. Hopefully something that works.
Woke up at about a 7 today, got to work and took half a pain pill, and the rest of the day wasn't too bad. Had a few flare-ups but nothing major. Also, I'm not sleeping worth a damn. In theory, something is getting called in to the pharmacy. Hopefully something that works.
Sunday, June 13, 2010
I'm on FIRE!
OK, I'm not actually on fire, but today at work my hands had this terrible burning sensation. It started on the backs of my fingers between the last knuckle and my palm. Then it spread to the outside of my palm, then the other side of my hand. Now I'm having mild burning in my forearms. WHAT THE HELL?! My skin is intermittently red and splotchy where the burning is. I think it must be some kind of reaction to a chemical or something, but we aren't using anything new in the kitchen. It happened to my hands once before after wearing powdered gloves for a long time, but we stopped using powdered gloves months ago.
The forearm thing happened literally right before I started typing this. I had to keep dunking my hands in a half pan of ice water at work to stop the burning. Heat made it way worse (going outside, warm water, etc.). I hope it's just a reaction or some nerve thing, because those are easy fixes.
This has been one of my best weeks in terms of pain. I haven't gotten above a 7. I think hot yoga is helping, and it's cheaper than my doctor, so I'm probably going to try to get a month unlimited and see if that helps.
Dear God, this burning needs to stop. That is all.
The forearm thing happened literally right before I started typing this. I had to keep dunking my hands in a half pan of ice water at work to stop the burning. Heat made it way worse (going outside, warm water, etc.). I hope it's just a reaction or some nerve thing, because those are easy fixes.
This has been one of my best weeks in terms of pain. I haven't gotten above a 7. I think hot yoga is helping, and it's cheaper than my doctor, so I'm probably going to try to get a month unlimited and see if that helps.
Dear God, this burning needs to stop. That is all.
Friday, June 11, 2010
A Stunning Realization
Had more dizziness and weird head feelings today, too, and I was reading my old posts and discovered this must indeed be a Thursday trend. Which makes no sense but neither does my pain so I'm just going to go with it.
California Called - They Want Your Pain Back
Got a call today from Dr. Cook's office in California. Check him out online here. He specializes in endometriosis and pelvic pain, and they want me to send them surgical records so they can review my case. THERE MAY BE HOPE FOR ME YET!
Pain update: Despite the complete falling apart of the infrastructure, I've had two good days in a row. Which proves that this is not caused by stress because my grandfather had a heart attack Wednesday night and I found out via Facebook because no one called me.
Pain update: Despite the complete falling apart of the infrastructure, I've had two good days in a row. Which proves that this is not caused by stress because my grandfather had a heart attack Wednesday night and I found out via Facebook because no one called me.
Wednesday, June 9, 2010
Not Making Progress
Yep, that's the reason my doctor won't see me anymore. Well, she'll see me in six weeks after I see some other guy who does some other injections that either will or won't work. Yay.
Also, I can't get the fentanyl patch or dilaudid unless I go to a pain clinic. Apparently, the fact that I've already been to a pain clinic who said they couldn't help me doesn't mean anything. And while the idea of crazy strong meds doesn't appeal to me, I have accepted that I do, in fact, need crazy strong meds because my pain is crazy strong and so is my threshold.
So, in conclusion, the medical community can bite me. That is all.
Oh, and obviously my pain has been worse lately. If it hadn't been, it would be progress, and I could still get treated. By the way, telling me that she can no longer help me cost me 70 fucking dollars. YOU COULD HAVE TOLD ME OVER THE PHONE FOR FREE.
Also, I can't get the fentanyl patch or dilaudid unless I go to a pain clinic. Apparently, the fact that I've already been to a pain clinic who said they couldn't help me doesn't mean anything. And while the idea of crazy strong meds doesn't appeal to me, I have accepted that I do, in fact, need crazy strong meds because my pain is crazy strong and so is my threshold.
So, in conclusion, the medical community can bite me. That is all.
Oh, and obviously my pain has been worse lately. If it hadn't been, it would be progress, and I could still get treated. By the way, telling me that she can no longer help me cost me 70 fucking dollars. YOU COULD HAVE TOLD ME OVER THE PHONE FOR FREE.
Saturday, June 5, 2010
A Long End to the Week
Wednesday was a bad day. I woke up at an 8, and it didn't let up. I tried to go to work, but they realized how sick I was and sent me home. I got my night shift covered and went to Summit.
After the usual questions and peeing in a cup, I got a shot of dilaudid and finigren (or however you spell it - generic name is promethazine) in my ass. I WAS HIGH AS A KITE! I was higher than a kite. I was high as a kite being flown by another kite. Then the nurse came back and asked my pain level, which had shot up to a 9 by the time they got around to giving me meds. "8" "Wow, you have a high pain threshold."
Actually, according to Michael, my pain threshold is "superhuman." After 2-3 hours the dilaudid kicked in fully and I was down to a 5, which is huge for me - nothing brings me down 4 pain levels. So we have a miracle drug!
They gave me some 2 mg pills of it, too, and they help a lot. I think if I took them on a normal day I could be completely pain free. However, I like to know and understand what I'm putting into my body, and this stuff works great, but it is incredibly potent and not something I want to take on a day I don't feel like I'm dying.
So, today, I didn't take one. I did my usual muscle relaxer with half a lortab and made it through work fine. The pain started to flare up again tonight. I took half a pill.
All of this has got me thinking about my pain and what it's come to. I get bad flare-ups about once every two months (so bad I end up in the hospital). I have 2-4 really bad days per month. During the bad times, they've given me percocet, lortab, pure oxycontin, morphine, and toradol - none of which got me below a 5, and I'm talking 2 full syringes of morphine on top of 20 mg pure oxycontin. Hell, before the toradol they gave me five 5 mg pills of oxycontin. WHAT THE HELL?! Strong stuff, and it did nothing.
So what does it take for me to call something a "miracle pill" - my new name for dilaudid. It doesn't make me pain free on the really bad days, but it does get me functional - down to a 5, which is great considering the best I get is a 4. And what is dilaudid? I looked it up. It's stronger than morphine (8-10 times) and stronger than heroin (3-5 times). STRONGER THAN HEROIN?! This really makes me laugh about that war on drugs thing. But it helps, and it's been used to treat chronic pain, along with morphine and fentanyl, which comes in a transdermal patch I'm just itching to ask my doctor about. Fentanyl is by far the strongest thing I was ever on (during my colonoscopy), and I didn't need a pain pill for 12 hours after that. This was when I was taking them every 2 hours and was completely bedridden.
So, in conclusion, I'm hoping to discuss transdermal patches and liquid pain killers at my appointment Tuesday. I know for most medicines in general, liquid forms are more effective for me than pills. My theory is I'd be able to take less of the medicine and that's better in the long run.
After the usual questions and peeing in a cup, I got a shot of dilaudid and finigren (or however you spell it - generic name is promethazine) in my ass. I WAS HIGH AS A KITE! I was higher than a kite. I was high as a kite being flown by another kite. Then the nurse came back and asked my pain level, which had shot up to a 9 by the time they got around to giving me meds. "8" "Wow, you have a high pain threshold."
Actually, according to Michael, my pain threshold is "superhuman." After 2-3 hours the dilaudid kicked in fully and I was down to a 5, which is huge for me - nothing brings me down 4 pain levels. So we have a miracle drug!
They gave me some 2 mg pills of it, too, and they help a lot. I think if I took them on a normal day I could be completely pain free. However, I like to know and understand what I'm putting into my body, and this stuff works great, but it is incredibly potent and not something I want to take on a day I don't feel like I'm dying.
So, today, I didn't take one. I did my usual muscle relaxer with half a lortab and made it through work fine. The pain started to flare up again tonight. I took half a pill.
All of this has got me thinking about my pain and what it's come to. I get bad flare-ups about once every two months (so bad I end up in the hospital). I have 2-4 really bad days per month. During the bad times, they've given me percocet, lortab, pure oxycontin, morphine, and toradol - none of which got me below a 5, and I'm talking 2 full syringes of morphine on top of 20 mg pure oxycontin. Hell, before the toradol they gave me five 5 mg pills of oxycontin. WHAT THE HELL?! Strong stuff, and it did nothing.
So what does it take for me to call something a "miracle pill" - my new name for dilaudid. It doesn't make me pain free on the really bad days, but it does get me functional - down to a 5, which is great considering the best I get is a 4. And what is dilaudid? I looked it up. It's stronger than morphine (8-10 times) and stronger than heroin (3-5 times). STRONGER THAN HEROIN?! This really makes me laugh about that war on drugs thing. But it helps, and it's been used to treat chronic pain, along with morphine and fentanyl, which comes in a transdermal patch I'm just itching to ask my doctor about. Fentanyl is by far the strongest thing I was ever on (during my colonoscopy), and I didn't need a pain pill for 12 hours after that. This was when I was taking them every 2 hours and was completely bedridden.
So, in conclusion, I'm hoping to discuss transdermal patches and liquid pain killers at my appointment Tuesday. I know for most medicines in general, liquid forms are more effective for me than pills. My theory is I'd be able to take less of the medicine and that's better in the long run.
Tuesday, June 1, 2010
Painiversary 2010
Well, today was surprisingly good. Woke up around a 5 or 6, which is great considering I went to bed at an 8. Got down to a...wait for it...3! 3! That's cause for celebration! It was at work. Then it started to climb up again but not that badly. PT went well - worked on my right side because my hips were CRAZY tight. Then Erin gave me a toasted bagel with hazelnut cream cheese from Panera - yum! Went home, watched Jeopardy, had dinner and ice cream, and just relaxed a bit. It was nice.
I think one of the keys to my pain are my endorphins - as in, I need lots of them. When I do something to release endorphins (i.e. get a tattoo, trivia games, video games, etc.), my pain levels are lower. When I'm stressed they're higher, but lately I've been under a lot of stress and the pain hasn't responded quite as drastically as usual. I suppose I'm managing my stress better, which is good, but I'm still in pain, which reiterates my theory that it's going to take more than a backbrace and stress management to fix me.
I've made it two years now - two years of everything being controlled by pain. I'm ready for a change. I'm ready to have a normal life again. I really hope I don't have another June 1 like this.
I think one of the keys to my pain are my endorphins - as in, I need lots of them. When I do something to release endorphins (i.e. get a tattoo, trivia games, video games, etc.), my pain levels are lower. When I'm stressed they're higher, but lately I've been under a lot of stress and the pain hasn't responded quite as drastically as usual. I suppose I'm managing my stress better, which is good, but I'm still in pain, which reiterates my theory that it's going to take more than a backbrace and stress management to fix me.
I've made it two years now - two years of everything being controlled by pain. I'm ready for a change. I'm ready to have a normal life again. I really hope I don't have another June 1 like this.
Happy Painiversary to me!
Well, it's my painiversary. Not much has changed. Woke up today at an 8, got down to about a 3.5 (huge deal) while floating in the pool. Now I'm in bed, after ice and now heat, and I'm back at an 8. Lather, rinse, repeat.
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