Primal Feet First: In Search of Lost Time or Remembrance of Things Past page 14

[drssgchic]

(Her name is Betty, after the song Black Betty by Ram Jam. Feel free to laugh)

My car is also Bettie, but for Bettie Page, and also Bete Noire (both because she needs so much work, and all my "American muscle car" loving friends make fun of her. I simply love her. She has a little bit of bad girl in her, but is mostly a good girl at heart.
I'm not giving up my car yet. I'm really hoping to drive again even if it means they have to drill holes in my head or something. Even if all I'm able to do is have her bumble and purr me to the grocery store independently instead of having to have husband drive me everywhere ALL the time it will be nice.

The first time I heard that song (Spiderbait's version) I loved it- then I wondered if I'd imagined it because I went months without hearing it again. It's a good one I'm sorry you have to give up one of your Betties, but I'm glad you're hanging on to the other one. In one of the earlier posts you were kvetching about how much you hurt after yard work- and you reminded yourself that at least you CAN do yard work. It's slow, but it sounds like the general trend (excepting the last four days) is an improvement.

I'm sorry your brain/tongue is still misbehaving

[drssgchic]

Cori- I was just thinking- since you need a buddy when you leave the house, have you thought about a service dog? Would that be something helpful? Kill two birds with one stone- training your GSD would give you something to think about/work on when you're having a good day and it'll give you more freedom.

Just an idea

[canio6]

Cori- I was just thinking- since you need a buddy when you leave the house, have you thought about a service dog? Would that be something helpful? Kill two birds with one stone- training your GSD would give you something to think about/work on when you're having a good day and it'll give you more freedom.

Just an idea

This is a great idea.

[cori93437]

We have considered training my GSD for service.
Unfortunately we found that the guy local to us who did all the major training and training help is out of the business now.
My sweet GSD boy has some issues that make him not ideal.
He is afraid of thunderstorms for a start... and here in FL... well. We are working on it.

Also he is a bit naturally protective of me.
He's a rescue, and I had to force feed him for a couple of weeks just to get him to live.
He is bonded to me in the way that protective breeds often can be.
He follows me around the house, he's not neurotic and needy, but he wants to see me and checks on me regularly. (When I take longs baths he won't lay in the bathroom... he lays out in the hallway... but pokes his head in every so often to make sure I'm there and OK.)
When my brain decides to have one of it's special moments it's a lot like I have epilepsy. Not tonic-clonic seizures, but completely zone out, I can't respond to my surroundings, I can't speek/communicate, I can't really move. This lasts from a minute or two to maybe 5-6. If I stay in range of whatever stimulus is causing the "special moment" (sounds, lights, too much physical activity) I will come and go in waves until I am removed from the area. Afterward I'm extremely tired and weak. Basically in need of being put into bed to sleep it off for a while. It's like brain OVERLOAD.

If I were to have one of my slumps and someone approached me, he is 95 lbs of solid muscle and I would have zero control over him. If he was protective he'd be doing the right thing, and the wrong thing.
Plus... I don't know if I could make it home on my own with just him.

That said... since I no longer have access to a dog trainer (the one were were going to go to specialized in working dogs), can anyone recommend a good BOOK on specialty service training?
My guy is already pretty polite. He sits, stays, lays down, goes to bed (his pillow), shakes, backs up, fetches until your arm falls off (he is NOT food driven), and we take him out to places like Petco where he meets other dogs and people and behaves.
Small furry things like cats are still a bit iffy, gotta watch him. They run away, and chasing is FUN!!!
Inside my house he is a bit less polite... as he wants to lay his head in laps for pets and scratches, and not everyone wants to cuddle with 95lbs of shedding white beast.
Completely MY fault. We don't have people over often because when I feel well enough I really want to get OUT of the house, so he doesn't get to practice leaving people alone much.

[drssgchic]

Ah, gotcha. I was thinking something along the lines of if he knew you were having one of your moments, he could walk you home or something- but I hear you about not being sure of the reaction if you're vulnerable and he knows it.

My Dad loves to tell the story of Uncle John (Dad's best friend) and Casey, my parent's dog. Dad warned Uncle John not to sit on the floor because of the dog, but with two little kids in the house, of course he wanted to sit on the floor to play with us. 10 seconds after his butt hit the floor, his back hit the floor too since Casey was sitting on him. Bear in mind that at that point, Casey looked like a perfect German Shephard, but the Saint Bernard size choke-chain Dad had bought him only just fit over his head . . .

[cori93437]

So, come tomorrow will make a week of FAIL for me.
Fail that is getting to be even worse fail.
Feeling weaker/more disoriented when I stand and move around, speech is constantly affected and more affected, noises/sounds are starting to be a problem again and I'll probably be back on a hearing hiatus soon via my Bose QC15's.
This comes after about 4 good months on meds... Not perfect the whole time, but good.
I had random rough days here and there, but I also had HOPE because it was working so well for me, and I was tolerating the med so well. (It is a difficult med.)
Adjusting to the rise in medication twice as my levels were increased was a bit rough in itself.
BUT... how much higher can I go???

The meds already have side effects. It causes tiredness and fatigue, nausea and lack of appetite (good and bad I guess?), and mineral imbalances that I have to supplement for. Other symptoms it's hard to know if they are side effects of the med or just effects of the disease that aren't being helped, because there is a lot of overlap. I fight urinary acidosis daily to try and prevent kidney stones and kidney damage. Metabolic acidosis hangs over my head on the heels of the urinary acidosis, and would cause major problems.

I'm at about half the MAX. and got a couple of good months out of it. If docs increase dosage how much harder is that acidosis going to be to control to keep the kidney damage at bay. And how much good will it really do? How much time will I get out of it before it stops working again?
Are they going to cocktail me by adding a second drug? I know what the second drug is... no horrible physical side effects except even LESS desire to eat, but my cognitive clarity is going right out the window! Weee!
If the rugs don't work are they going to drill a whole in my head. SHUNT! Shunts is where this whole things starts to get really dangerous. The three ladies in my group who have died have all died seeking relief via shunts, or revision for shunts, shunt/brain surgery "complications".
But... what choice does one ever really have. Live in pain, and like a stroke victim, losing the vast majority of the quality of life that I have LEFT... or take that chance. Most people survive brain shunt surgeries just fine. You just have to sigh that waiver first.

What if, what if what if...
I'm just having a suck week.
It's hard to make progress and feel better, even if you aren't really well, and then watch yourself regress.
In this case it's listen... I open my mouth, in the shower after I'm really awake, and the voice is not mine. Again.
I really fucking HATE 'Ben Roethlisberger'... and 'Listerine'... and 'Dr. Teal's Lavender Epsom Salts' ... and the rest of the things I test my tongue with every day. Because they all sound wrong.

Delete "Sail" insert "Fail"... that's me!


Such a whiny post. But it's nice to have somewhere to 'put' it.
I've cried this week. I've pounded the tile in the shower with my fists.
I've been a bit 'touchy' on occasion with husband.
And it's not even PMS time!
It's just "Hey Universe, go be unfair to someone else for a fucking change!" time.
Yeah. That's SO not how it works. FML.

[Finnegans Wake]

So sorry to hear, Cori. Just... will keep your health in my thoughts and prayers.

[drssgchic]

*Sending you unsalted beef-broth-flavored quiet hugs*

I wish I could send something more constructive

[Finnegans Wake]

So... my attention to detail amongs favorite MDA journals has been scattershot at best, due to torrential waves of end of fiscal year shit hitting me in the face at work. And somehow I missed the CRPS and other issues discussed in detail on p. 13. Also never read the earliest posts, so now I'm up on the Dad saga.

And, just wow. You've been through a lot. Don't even know what to say except to agree that you have a pretty amazing attitude through it all, and I really hope you get some medical relief. *Hugs*

[Crabbcakes]

Hi Cori!

I just finished reading all 14 current pages of your thread. I kind of noticed you from other places on this forum by how lots of folks seemed to know the motorcycle story and that made me curious. I'm sitting here smiling and tearing up all at the same time. Smiling because you haven't given up, and tearing up that you had / have to go through all this.

If someone can really like someone by reading the Internet, I like you. There is a lot that I believe I really get about you through personal experience - the evil, abusive childhood. Trying to sort it all out once you get out of the house. Finding a great man anyway, even though you really tried to warn him off. And the neuro thing. I don't have it, but a daughter has multiple neuro issues so I understand the brain overload and the speech thing and the stumbly thing and a few other thingies, albeit from a caregiver standpoint.

There has been one little "positive" (whatever you want to call it) I managed to squeeze from my own experiences: sometimes I met others going through their own personal hell and swapping stories helped both of us. You are still one brave chick for being as blunt as you are.

Do you know that I actually googled "Ben Roethlisberger test" to find out what that was (before I got to the post about it)?

But you sooo have me on the music! I listen to music for 100-year-old-arch-conservative-great-grandmothers... my next concert is Barry Manilow (but I actually want to see him!) in August...