The Pain in My Brain is Mainly...

... down the drain. Goneish. Yay.

I called my regular pain clinic last Monday because I just couldn't handle the pain and the puking anymore. Surprisingly, they said "Is Friday good?" FUCK yeah! The doc even wrote me another pain med scrip to hold me out till then.

Friday: HUGE storm rolls in. Tornado watch, Severe Thunderstorm Warning, Flash Flood Warning. Panic wonders what will happen if I'm on the table and they're shoving the needles into my skull and the power goes out. Like any normal person, I'm terminally afraid of hearing a doctor say "Oooops."

But the storm cell passed, leaving a few hour period between it and the next one, and things went off without a hitch.

Feeling pretty good, considering. I can actually open my eyes without light causing stabbing pain, and the uber headaches are absent. The back of my head aches a bit, but when you think about how many needles got poked around in there, that makes sense. Next 48 hours will be touch and go with pain as my body reacts to the intrusion there, but I've got ice packs and pain drugs, so I should be all right.

It's nice, to not feel like my brain is going to ooze out through my eye sockets.

Got another scrip for pain meds that I haven't even bothered to fill. Awesome!

Saturday: Watched some J-Horror, and slept a lot. YAWNING a lot. Now that was cool. Tired. Tired because my body is recovering and trying to heal and make up for lost sleep, instead of just being overall exhausted. Took it easy most of the day, did a little shopping with a kidlet to get some entertainment, got food -- and was actually HUNGRY -- then snoozed. A lot.

Sunday: Tired. So tired. But it's tired in a good way, it's the healing kind of tired, instead of overall exhaustion. The kind of tired where I actually YAWN. My body is trying to heal itself, and make up for the lack of quality sleep. Another day or two, and hopefully I'll be caught up and back on track.

Running a low-grade fever, which is nothing to be concerned about with me. It's just how my body reacts to 'abuse' like having multiple needles shoved into my skull. Nothing serious, nothing high-grade or over 100, just enough to feel a bit under the weather.

But I'm down to just one prescription pain med, instead of several drugs in combination, and my stomach is already much happier. Reflux is behaving to the point that I've only had to take Prilosec once since Friday, and that was because I got a little carried away with the "OMFG I'm HUNGRY!!!" and ate things that irritated my stomach. Yes, I'm actually hungry again, and keeping food down without massive nausea.

Haven't had to use the icepack for tenderness on the back of my skull since Friday, which is great. I'm sleeping in any position I want without owies there. And other than the fact that the sun was out yesterday for the first time in days withou any cloudcover, light isn't bothering me. THAT kind of bright bothers me even when I don't hurt, since my eyes are over-photosensitive and always have been.

I should even be able to endure the noise and light of a movie theater next weekend if DG comes home.

Still haven't filled the pain meds. I don't really need them, and I had some left over from earlier in the week. I <3 my nerve blocks.

Right now, I just want to snuggle up in bed with someone that appreciates J-Horror and watch a few movies so I don't feel as bad about dozing off in the middle of the day for a well-earned nap.

Yawn. Night night.

Is it April Yet?

And make a wish.

Oh god, what a week.

First off, the brain spikes are back in full force, leaving me clumsy, disoriented, and in constant pain. The new neurologist that I was recommended to won't be back in the office till Monday so I can't even get an appointment yet -- grr. I need another occipital nerve block BAD.

So of course, that can't POSSIBLY be enough stress. Noooooo, never.

Yesterday, I get a call from Thing 2's school. She's in the vice-principal's office, and in trouble. Big trouble. Great. It's a long story, and I'm not even going to get into it because my blood pressure is already through the roof from TODAY, much less going back and reminding myself about yesterday. Let's just say that she's seriously grounded, and leave it at that.

TODAY, I walk outside to get the mail, to find an ambulance and fire truck across the street. Fuck.

See, the neighbors there are literally adoptive grandparents for the Things. Their own grandkids are far away, and they know that the Things grandparents are a distance away, so it was a mutual adoption all the way around. These are the people that saved my ass on Halloween when I fucked up my ankle. The wife is the one that drove me to the ER, and stayed with me the entire time, holding my hand and generally being wonderful, while the husband watched the Things for me till we got home. They go to almost all of Thing 1's band concerts. The husband is the cop that helps watch out for us when DG is out in the field. In short, they're fantastic people.

And I walk out to see her being loaded into an ambulance. Right. Cue panic attack. I race over there, to realize that she's so out of it she doesn't even notice I'm there. ACK! I ask if the husband is there, to make sure she has someone to go up with her, despite the fact that I needed to pick Thing 2 up soon. Luckily, he is -- along with the other neighbor that takes Thing 2 to school. Yes, this neighborhood is that tight. We take care of each other.

They THINK she just got really dehydrated, and I'm all too familiar with how bad that can mess you up.

So I go pick up Thing 2, and then Thing 1 and her Rukia-clone buddy (and I swear I want to adopt both her and her older sister, those kids are great), get Pooka's Taxi Service all sorted out and the kids where they all need to be, and go up to the ER.

She was doing much better when I got there, not as pale, and actually made a joke that the tables had turned and it was her turn, and wasn't I supposed to be the one flat on my back on a gurney? Good sign. They expect her to go home later, after the blood work comes back and she gets another bag or two in her IV, but they too think it's just dehydration.

It then becomes my job to make the update phone calls, to take some of the burden off him. Neighbor is updated, Thing 1 is updated (and starts sobbing with relief, she REALLY adores these people), and Thing 2 is now busy working on a Get Well card.

All this, on top of the brain spikes and the resulting clumsies and crankies, and me being too damn exhausted from constant pain to really be functional and do anything, plus DG of course being off in OKC, and the whole 'single mom' thing, and, oh yes, my MOMSTER deciding at 8:30 on Sunday night to SHOW UP AT MY HOUSE because they were in town for a train show.

I had to figure out how to get the energy to a softball game, since half of Thing 1's friends were in the game, and ALL have adopted me as the Coolest Mom Evah and want me to be there to help cheer em on. They lost both games. I doubt I qualify as a good luck charm. And of course, I got sunburned, first scorch of the year.

There ain't enough anti-anxiety meds in the world to deal with this week. I think I may drive out to the Temple later and inhale some zen.

And now for something completely similar

I'm sure I'm starting to sound like a broken record, but at least for now the playback is without all the nasty scratchy sounds.

Had my follow-up appointment with the pain clinic. Unfortunately, my COBRA'd insurance won't pay for PT with that clinic, but they will pay for it elsewhere, so as soon as things settle down a bit with DG's new job, I'll be starting 'occupational therapy' instead of straight old boring PT.

They're also setting me up for biofeedback and meditation to try and help control my response to pain surges, so that I can THINK my way to lower blood pressure and less agony. Taking into account what I've seen about Buddhist monks being able to totally control their bodies through thought -- even body temperature -- it's certainly possible to do it.

Considering the pain psychologist's commentary about me, I believe that to be entirely possible in my case. He said that I was already in the proper mindset for pain management, at a point that he said he usually doesn't see in patients until they've been coming to the clinic for months, so I'm already ahead of the game. Impressed him several times, the weight loss totally blew his mind, and convinced him even more that I was going to be a successful patient. Shiny.

The horrible brain spikes are still absent. This is just amazing, I feel like a totally different person at this point. Sure, I still have normal pain, and the burning throbbing from the RSD, but it's all tolerable pain that I'm used to by now. So long as my head isn't exploding, I can handle just about anything. Still get the dull headaches from the Chiari, but they're tolerable.

And I'm FUNCTIONAL again. I've been out of the house more often since the nerve block than I had in the year before that point. I've totally torn apart and reorganized my office space. Ditto to the bedroom, and not just my side of it, but have most of the rest of it under something resembling control.

It helps the mindset, with everything going on, to see at least SOME sign of organization and control. I may not be able to control everything, but I can control my personal space and sometimes, that's all that matters.

I have a curling iron now for my hair, which has actually been used. My way-too-old makeup has been tossed out, the remainder reorganized, and I actually wear it from time to time. I wear nailpolish again, even though I have to keep my nails ridiculously short because of the way they curve under.

Been reading like a fiend as well. Lots of quantum physics, forensic science (pathology, psychology, crime scene), epidemiology. While my mind still isn't as reliable as it was years ago, without the intense pain it's easier to concentrate and pay attention.

The Things have finally gone back to school, which is an inordinate amount of relief to stress. Kids were starting to drive me screaming up the walls bugnuts insane this summer. They seem to be adjusting pretty well, with few dramatic angsty moments (so far, but you know how teens can be).

"It's life, Jim, but not as we know it."

Objects at Rest

Do you know what it's like to wake up, get out of bed, move around, get your morning caffeine, check mail, and take a shower without effort or pain?

I had forgotten what that was like.

Oh, sure, my body still aches, but I'm used to that, been living with it for so many years that it's nothing for me. It was the headaches that really got to me, and made me almost completely unable to function. Never have dealt well with pain above the neck; earaches, headaches, toothache, etc. Over 300 days of headache, well, you forget what "normal life" feels like.

The injection sites are still tender, but only really ache when touched -- like taking a shower. But it wasn't bad, just caused a few winces.

Got a party to go to tonight, and I'm actually looking forward to being social for a change. It's different, when your brain isn't trying to explode and ooze out your ears and eyes.

I have another appointment at the pain clinic August 4th, to start the actual pain management program, total profile, complete workup, and they're getting all my MRI results. I really liked the doc, too. I'm finally getting real help with conditions that are never going to go away.

Shiny!

Post-Op Update

I'm home.

The initial local has worn off, and the sites are a little sore, not bad. Got an icepack on it now, lounging in bed.

BUT ....

My head doesn't hurt.

I mean Does Not Hurt. I can turn my head without turning my entire body, and pain doesn't explode. I can look up. I can look down. I can COUGH without my head detonating. For the first time in a year (without the one day where I had benefits of morphine), my head DOESN'T HURT.

Still a little fuzzy from the Versed, but otherwise, things are looking pretty shiny.