"Enjoy Your Book. Folks Will Be in to Abuse You in a Minute" OR My Day at Baptist

Yes, it was a day. I started with PT at 11:30, then grabbed lunch at Five Guys and went to work to get my paycheck. Then I went to the bank and bested Skank of America with my persuasive logic and tears. Then I went to the doctor, who came into the room long enough to insist I go to the ER about my chest pain.

They wheeled me through the labyrinth of Baptist to the ER, where they immediately did an EKG that was normal, as I suspected it would be. Then they drew some blood to rule out a clot. Blood did not do that. It was abnormal. Apparently something that sounded like "D-Dimers" was high, and that has to do with clotting. They did a CT and that was normal (hooray for my lungs), and they sent me home. But that was around 10 p.m.

I was asked three times if I had taken blood thinners or if I had a blood disorder. Now, with all those steroids, I wasn't allowed blood thinners or alcohol for six weeks. There is no reason my blood shouldn't clot. I have suspected for a while I may have a vitamin K deficiency, but I've been unable to find a supplement. The nurse, Rhonda, who was really cool, said that was because it can make blood too thick. So I ate a salad. It was nasty. I will probably not do that again for a while.

My doctor was cool. He said, "Enjoy your book. Folks will be in to abuse you in a minute."

Back at the Summit ER

Yesterday was very bad. Friday was shockingly good, but yesterday was very bad. Had to go to the ER, got some morphine, more pills, normal scans, normal blood, normal urine. Pretty much a normal ER visit for me. Then I got home and had some pretty pain sharp pains in the left side of my chest. I'm also quite certain I stopped breathing twice - not for long, just long enough for me to gasp for air. But it happened twice in a row and I was so freaked out I couldn't sleep until after 4 a.m. because everyone is camping and there's no one to find me if something happens. Still having chest pains today. Called my doctor, but no one called back. Sigh.

Billie Jean Is Not My Doctor

I had more injections today. First off, the woman who did my IV gave me a shot to numb my arm first. HA! I was all, "That really isn't necessary." Naturally, it didn't numb my arm, but I'm so used to needles at this point that I'm not phased regardless.

I woke up from the procedure AWAKE - I was wide the hell awake. After I told the nurse that all three of her had nice skin, I then said, "I'm way too cognizant." Also, I didn't slur the word "cognizant" - weird. I asked the doctor about it later, and he said they gave me some fentanyl, but the also gave me propofol, or as he called it, "the Michael Jackson drug." Apparently, this drug is sometimes called "milk of amnesia," which is funny because I usually forget the first hour or so after waking up, but not this.

The last two times I woke up after the procedure without my usual pain until about 6-8 hours later. Not this time. This time I felt it immediately. This freaks me out. They gave me more fentanyl in my IV before I left the hospital, but it didn't work. It's about 100 times stronger than morphine, so this is disturbing. I told them not to bother with morphine because it doesn't work.

So what happens now? The doctor wants to see me again in three weeks. If this doesn't work, they can try different injections or platelet enriched plasma. Oh good. I can't wait to be tortured some more. Oh, and my pain meds are WEAKER than last time. WTF, doctor?! I already have to chew them to get them to work fast enough, and, you know, that's disgusting, but when I'm at work and the pain gets worse, I don't have an hour or so to kill to wait for stuff to kick in, and I sure as hell can't go sit down. EVER.

Side note: I talked to my dad afterward. Laura's daughter is an NP, and she and Laura had been talking and said that at some point they won't be able to put me under anymore. Dr. Wasudev said they used the different drug this time because last time they had to keep giving me so much that if they used it again I could stop breathing, and they don't intubate for this procedure. But I've dealt with this so long that if surgery would actually help me, I'd let them do it even if they couldn't put me under. Which I know is really messed up but I just want this to be over already.

Something Is Horribly Wrong

I am lying in bed under an excruciating pain I can't even describe, but I'll try to. I worked a double today. On the way, I had to get hamburger meat, so I was lifting 20 pounds. Worked seemed to go OK, but I didn't really get a lot of breaks. Around 9 I started feeling really bad, and I couldn't stop crying. I almost called my psychiatrist - I probably should have. I took half of a pain pill. When I got home, I put an ice pack on, but after about 30 minutes I could feel the pain pill starting to wear off. Now I'm in bed with heat, and I had to take a Dilaudid. It feels like an epic battle is happening in my insides. It's a sharp, intense pain, but it feels some fucked up combination of cramping and getting stabbed. And it won't stop hurting. I also had some bleeding. This isn't going to end well.

POPSS Goes the Weasel

I had my second POPSS procedure Thursday, and I somehow made it through work tonight. Seriously, I was on so many drugs I'm impressed I was able to function. Late last night I started getting deep stabbing sensations at some of the injection sites.

Oh, here's some fun news: I WOKE UP DURING THE PROCEDURE! HOLY SHIT! I thought I had, but I wasn't sure. I asked, and Jeff confirmed that they said I did wake up. It hurt like a bitch, too. I remember feeling intense pain that must have been some of the injections. Yikes. I hope that doesn't happen again.

Pain Level 1

Pain level 1! Just got home from my POPSS procedure, and I'm at a 1! WOOT! Also, the concussion yesterday didn't interfere with the anesthesia, so that's good. They had a lot more places to inject because of the accident aggravating everything, but the fentanyl is still in my system, so I'm not really in pain. I'm expecting tomorrow to be a form of torture beyond words, but for now, I'm good. Until it wears off.

Pain, Pain, Go Away

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.

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.

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'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.

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.

"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.

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.

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.

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.

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.

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.

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.

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.

Ouch

Today I've been in a funk. I think the upcoming craptastic Memorial Day/Painiversary combo is getting to me. Pain is pretty bad again. I've been icing it most of the time if I'm not at work. In between I use heat, but the ice seems to help the most.

Today I didn't want to do anything. I went to work because I had to, but I would have much rather stayed on the couch. I think I need a vacation from work, pain, and my doctors. But that will have to wait. Forever.

Friday Nights, Saturday Mornings

Last night things started to get bad toward the end of the night. This morning I woke up at a 7. I'm still at a 7. I'm using heat now - last night I fell asleep with an ice pack on. Nothing exciting to update now - just going to lie around and hope it passes before work tonight.

Shocking

Today started out OK. I saw Dr. Williams, who agreed my recent anxiety is justified considering the circumstances. I took a nap and spent the better part of the day in bed. Then I went to get my prescription only to discover that I was short one pill, which is only alarming because it's a controlled substance. The pharmacy, WALGREENS IN HERMITAGE, of course offered no help in trying to track down the missing pill. My theory is someone is either incapable of counting to 20 (unlikely), someone made a mistake (somewhat likely), or someone is pocketing one or two pills from each narcotic prescription and reaping the benefits (I think relatively likely). At any rate, I have 19 pills for the month instead of 20. But it's an integrity issue.

I had more disorientation tonight. This first happened exactly a week ago. Must be a Thursday thing. On Thursdays, I have trouble forming sentences late in the evening (post 10 p.m.), have difficulty concentrating, and other neurological symptoms are still present (insensitivity to heat/cold). My grandfather has Parkinson's - he's always more confused at night. I hope that's not related, but it's worth looking into I suppose.

I should note that there were no medications involved in either disorientation episode. I'm still a little dizzy now. I think it's time to consult another neurologist (this will be the fourth I think, maybe third - it's hard to keep track).

I'm wearing the electrodes now. Apparently, turning them up so high that it causes involuntary muscle twitching releases endorphins and blocks the pain pathway for several hours after removing the electrodes. Of course, I have to wear them for about an hour for that to work, all the while twitching. This sounds not at all normal or reasonable, but at this point, I don't care.

If You're Going to Hell and Back, I Can Give You Directions

I haven't posted in a while because it's been a crazy few days in my personal life. I found out Saturday that my ASM in Chattanooga lost her 8-week-old niece and 19-year-old sister on the same day. Then Michael was hospitalized. Needless to say, I was stressed. But this didn't have the usual effect that stress has on my pain. I guess that's good.

I started feeling bad immediately after I moved after my injections on Tuesday. I went from 3.5/4 to an 8 instantaneously. I don't know why that happens, but I think it may be time to stop injections for a while. Today it started flaring up again on the left and rights sides - the stabbing, twisting pain that usually precedes hospital visits. But I've been at the hospital every day since Michael went in, and I don't want to go back. I'm putting heat on now, and I'm supposed to stay off my feet, which is what I'm going to do tomorrow.

I'm hoping to see Dr. Williams in the morning (my psychiatrist). My anxiety/stress level is ridiculous now. I'm not sleeping well, and I'm having trouble focusing when doing things like driving. Today, on the way to work, I realized I was half in the left shoulder, half on the road. Definitely time to fix that.

Overall, the weekend was tough on my body (I am physically and emotionally exhausted), but it could have been worse.

Tuesday is the two-year painiversary. Today I realized the gravity of that - I have been in constant pain for two years, and it has completely controlled my life. The year before that was full of psychological/emotional pain. I've been hurting for a long time. I'd like some relief now. And if my medical providers can't make me better, they should at least try to make me feel better.

Crazy Eights

Today started out OK. I went to work (back brace and all) for four hours, helping during lunch rush and putting the truck away (with no heavy lifting, just putting some things in the freezer). Tonight I had a glass of riesling with dinner and some chocolate cake for dessert, but it was very dense, dark chocolate, which, in theory, is OK for me to have.

I was fine until about 11. My pain increased suddenly, and I've been at an 8 ever since. I was driving home and became disoriented. I could tell my reactions were slower, and I was having trouble forming sentences. This happened before in 2008 for a while. The strangest thing is, while these are some side effects for medication, I wasn't on anything. I'm out of pain meds, and I hadn't taken my evening dose of muscle relaxer yet (I save that until before bed, which decreases the chance of me careening into something on my way home on account of side effects that I never feel, but I like to be safe anyway).

Now I'm home and applying lots of heat. LOTS. My leg is starting to feel tight and crampy again, but it isn't nearly the severity as before. I'm stretching my hamstring, though, just in case. Also, my upper left thigh had a brief sharp, stabbing pain, but it quickly subsided.

So let's recap: Thursday was bad, and I can't think of anything that stands out except that damn back brace that my doctor insisted I get. I got it, and what has it done? IT HAS MADE ME WORSE. But apparently it's something I need and the worseness is temporary. It better be.

Oh, and when I was disoriented, before that happened, the back of my head (where my head meets my neck) was really tingly. This seems to be the progression of things: intense pain; intense pain followed by paresthesia in the extremities and head (which I guess counts as an extremity as well); intense pain, paresthesia, and other neurological symptoms (disorientation, insensitivity to heat and cold, etc.). As an example, I can flip a quesadilla on the flat top using my hands instead of utensils and it doesn't hurt.

Let's take bets on what pain level I'll wake up at tomorrow. My guess is 7 or 8.

Chronic Pain in the Ass

Welcome to my pain diary! Medical professionals have suggested I keep a pain diary, and while I'm quite certain their goal wasn't for me to put it online, I'm hoping this will reach people who are in a similar situation. If not, it'll make you feel pretty good about your life!

Let's get a quick background: pain was sudden onset June 1, 2008. So, yeah, it's been a while. Pain and I are well acquainted. Really. I've seen it naked.

I'll skip all the boring tests I've had, but they've pretty much run the gamut on me. Surgeries, scans, scopes in orifices, the whole nine. Nothing showed up, which means I'm not pregnant, and I don't have cancer. Duh. If I'd been pregnant I'd have a walking kid right now, and if I'd had cancer, I'd be dead.

Today's pain actually wasn't that bad. Woke up at about a 6, which is completly normal for me. I accidentally left my back brace at home, but I made it through work OK. As an experiment, I didn't wear it to my night job either. Final result: nothing traumatic. No hospital visits, no screaming agony. Which is great because I have no pain meds should things flare up. Inevitably, they will flare up, and we'll worry about that when it happens.

I did some Pilates last night before bed - nothing too strenuous, just working on the core with some leg work. It felt good to sort of work out again, and I know it was good for my leg muscles, which have been seriously effed since sudden calf pain woke me up a few Fridays ago and put me in the ER...again. Seriously, I should get a punch card for Vanderbilt. Nine visits and your tenth is free!

Yesterday I got muscle injections, and I think that contributed to not feeling like death today, although last night that was not the case. After my injections, my pain was at a 9 by the time I got to work. Luckily, the Pill Fairy (this is not an actual person in my pain saga) left me half a pain pill, so I took that and managed to make it through work. Then I went to PT, had some pool therapy, and went home for some pajama vegging.

I don't know why it gets worse after injections sometimes, but it was unbearable. I'm afraid it's going to happen again, and I really don't want to end up in the hospital every 2-3 months because it flares up. I've been told when it flares up that I need to sit and stretch, but I don't see how this will help. I've tried that; it doesn't work. My flare-ups don't last minutes, they last about 36 hours, and I sure as hell can't stretch that long.

Stay tuned for our next episode.