I <3 my pain clinic!

SO, as a few of you know, the pain levels have been kicking my butt lately. I noticed that the nasty brain spikes started returning the day after I took my last prednisone and antibiotic, and wondered if it was related.

The pain doc said: "Absolutely." With a dental abcess, and my occipital neuralgia, the pain from the abcess, and the stress of infection and the prednisone, it aggravated the occipital nerve to the point that my last block wore off about a month or two too soon.

I'm scheduled to have needles shoved into my brain yet again on the 7th of September. That was the earliest they could get me in, and they APOLOGIZED for that. COOL!

I asked my pain doc about getting something to take at night, something that would last longer than 2-3 hours, because I'm sick of waking up and having to take more drugs. He did offer a stronger version of my current pain med, but darnit, I'm sick of pills. I have to take way too many on a daily basis as it is. So I asked about patches.

He said the Duralgesis patches aren't any good for acute pain, and they actually have to build up in your system. Then he stopped, and asked if I'd tried the Lidoderm patches. Why, no, no I hadn't.

..... Oh. My. God.

First off, they're huge, so I have to cut them down (which also means I get more usage out of each scrip), since I don't exactly have a big neck. I worried a bit, because I have some adhesive allergies, but the adhesive on these is really, really mild (in fact, it barely wants to stick on the back of my neck, darn hair).

.... And. They. WORK.

Not only do they work, they work directly on the area that HURTS, and doesn't affect the rest of the body. I can still take other pain meds without a problem at the same time. More importantly, they don't screw around with my brain or perception, so I don't feel all drugged up.

AND -- I can use them when my RSD sets off a joint or severe muscular pain elsewhere on my body, with direct to the pain relief.

My husband called earlier to check in after my appointment, and he said I sounded a hundred times better than I did yesterday.

Well, yeah, of course -- I can move my head without whimpering now, and my neck muscles are even loosening up a bit because they aren't clenching over the pain.

Wheeee!

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.

Objects in Motion

We're not in such a great place right now. Okay, a pretty bad place. Husband has lost his job, which means no money, no insurance -- well, you get the idea. Without insurance, my meds alone are 1200 a month. He's diabetic, which means he needs meds too. Which he's ignoring, but I'm used to that.

He COBRA'd my insurance so I'd have it through July, which actually enabled some real progress to finally be made with my last neurologist visit.

Bad News: Add Occipital Neuralgia to my list of Things Wrong With Pooka

Good News: It earned me a trip to (wait for it) ... A PAIN CLINIC!

My appointment at the pain clinic is this Thursday for a nerve block on my occiptal nerve, which -should-, theoretically, take care of the worst of the break-through and OMFGSBJ Can I Die? headaches.

I'm supposed to be there several hours. I already got the phone call, with the "no food after 8:30, clear liquids only" orders. So I know it's not just a background and history visit. People trying to HELP me. Whodda thunk it?

So it's going to be two days late to be a 'real' birthday present for me, but who counts when it's a GOOD present, right?

Pain relief. Better than freakin diamonds, as far as I'm concerned. Oh, who am I kidding, I don't really like diamonds anyway. Better than a new 260 gb hard drive and a 21" flatscreen monitor. Yeah, now THAT works!

Yep. I'm turning 38 tomorrow.

No fretting over aging at this point, I mean, I'm already poking 40 with a short stick, and my body is going about its unnatural business and aging faster than my years spent breathing anyway. Maybe it's a flux in quantum mechanics, or my body is going by "mileage" instead of "years". I suppose that would quantify out why my body is definitely trying to push the 65+ range instead of a nice perfectly normal 38.

So, the List:

--Reflex Sympathetic Dystrophy/Complex Regional Pain Syndome (RSD/CRPS)
--Fibromyalgia (which I argue with after the new findings)
--Thoracic Outlet Syndrome (same argument, just symptoms misread)
--Osteoarthritis
--Arnold Chiari Malformation I
--Cervical Spinal Stenosis
--Peripheral Neuropathy
--Occipital Neuralgia


Quite a doozy to look at, huh? And of course, I'm already wearing bifocals, which I knew I needed, but never realized how much till I had them, and suddenly I could read things again without doing the "find the right distance" dance.

The List sort of destroys the whole "aging gracefully" concept. There's very little graceful about me anymore. I stay bruised from stumbling, bouncing into things, and half the time not even feeling the impacts that leave the marks.

About the only part that IS aging gracefully is my face. Which is weird, since that's one of the places that usually shows signs first. But no, you can look at my hands and tell, but I am surprisingly free of most wrinkles and lines on my face. Granted, my face is now so gaunt that there's not much to help make wrinkles visible, but trust me, I've LOOKED for them, and I really don't have the things.

I guess you take what you got, and that has to be good enough.

Maxwell's Silver Hammer

Well ... no surgery for now. The Chiari hasn't changed in size, thus, no surgery. Okay, fine.

It gets better.

C4-C5 disc is ... uncooperative. Bulging, was the word used. Cervical Spinal Stenosis, for accuracy. "Avoid car wrecks and whiplash and you should be fine." Hah.

(Teri's comment was "...and you told them to avoid attempts at humor?")

There are lesions on my brain. I have RSD, which is degerative. I have a cervical disc hating on me. I have Chiari --- AND YET MY @#$#*& NEUROLOGIST CAN'T FIGURE OUT WHY I HAVE HAD A HEADACHE FOR 300 DAYS!

(Teri's addition: "Because your neurologist has never had a headache? and is a borderine moron?" I love her.)

He tells me it's just migraines -- cept, migraine drugs don't help. He tells me the Chiari isn't bad enough for all the symptoms -- cept, every Chiari patient and everyone on my Chiari list says that at ANY point it's enough to SHOW on an MRI, it's enough to be a problem.

Though his confusion boggles me after looking at the patient receipt with the ICD-9 codes and diagnoses on it. Compression of the brain. Cervical Spinal Stenosis. RSD. And yet he's confused. Uh huh.

Today, he decided to go for a dual attack -- an anti-depressant that also is used to treat headaches and neurological pain, particularly the peripheral neuropathy I have -bad-. And you know what?

AFTER 300 DAYS OF HEADACHE, DAMN STRAIGHT I'M DEPRESSED!

"Okay. I'm lost, I'm angry ... and I'm armed."

Yeah, I took the drugs.

I wonder what my GP has for rising homicidal mania.

Is it dead yet?

Well, I sure feel it.

The Chiari is kicking my ass with a vengeance. For a while, the meds the neuro gave me helped, but I can't even walk across the room without stumbling into things. My coordination is just gone. Visual disturbances totally blow goats for quarters, whether it's a sudden lack of depth perception, or halos, or an inability to focus at all. Memory? Forget it, I can't recall even simple things that I've known for years. I get frustrated over feeling so stupid.

And the headaches, oh god, the headaches. I've spent since last Thursday night crying. Drove DG crazy all weekend, because I was just hopeless. When I woke up crying today after only getting about 4 hours sleep, DG had enough.

Saw my GP today, filled her in a little more. Nice happy shot of Toradol to the way too scrawny ass cheek (mercifully, my sobbing at her during moments where I couldn't remember stuff distracted her from my weight -- yes, I've lost MORE weight, but that happens when the drugs stop working), and suddenly, I can move my neck again. It was a start.

Unlike my neuro, my lovely GP believes in pain meds. If you are in pain, you don't rest, you stress, pain gets worse. Some relief, and you can heal, or at least function. I have drugs. Life is improving already, just from the Toradol. Gotta bloody remind myself to just give in and stop being so stubborn and hit the ER for a Toradol and dialudid shot BEFORE it reaches the pain point that it did today.

Of course, as usual, gotta fight with insurance over them not wanting to pay for a med. GIVE ME MY DAMN ZYRTEC, YOU FREAKS. Stupid AETNA. I wanna BREATHE, people. Anyway.

I also see the neuro Friday.

At that point, we'll set up my next MRI, which will -hopefully- indicate the Chiari is bad enough for me to have my skull carved on as a birthday present. Ghoulish me, yes, I know, but frankly, getting the decompression surgery around my birthday WOULD be a present. I might finally see some real relief here.

I'm going to attempt to try to keep up a bit more here, it's just not always easy. Words are no longer my friend, they like taunting me from a distance. I will however, make sure I update when I know about the MRI, and the results, and if they're going to carve on my skull or not.

They damn well better. I can't handle another 6 months of this.

If it weren't for bad luck....

Well ... no surgery -- YET. Yet being the important phrase.

Adult Chiari Malformation, and five scattered lesions. Uncertain if the lesions are helping cause the pain, or are damage FROM the pain.

Adult Arnold Chiari I Malformation Fabulous link, pretty much explains -all- of the problems I've been having. I'm textbook on it.

The bizarre thing is, the Chiari was NOT on my last MRI. So it's growing.

Right now, the risks of surgery are greater than the risks of leaving it alone.

I get another MRI in 6 months or so, to check on the size, and see if surgical correction is required. In the meantime, a whole slew of new meds, including blood pressure (and the Chiari explains why my BP has gotten weird) medication to try to keep the worst of it down, and new anti-inflammatories specifically to help with this sort of thing.

Bleh.