More on Izzy's horrors that lead to a death wish....

[Izzy_*now*]

hi PR

I appreciate yout interest in this tricky situation.

I had physiatrists before for my spinal injury in 1969, so knew that is what I wanted. I asked my GP for a referral. He sent me to a Neurologist, who just took notes as I explained what had happened and was happening. He never touched me except to test my arm strength. I received a requested copy of his report 2 weeks later, and knew my GP had one, only to learn he (neurologist) thought I was lying.

I went back to my GP, asked for a referral to a Physiatrist and he said I was over-doctoring: that no one would ever be able to diagnose what was happening to me. I asked for that in writing, and we had words when I used the word 'incompentency' when mentioning my adventures (all of them) to date.

I then notified my lawyer, with a scan of the Drs note and he, my lawyer, arranged for an appointment, which is not a referral, so cost$. That is the one for Nov 23/11. Previous was just time wasted, as I waited 4 months between GP and Neurologist.

I have though of alternative sources, but want to go all the medical routes first, AND I always ask my lawyer what is permissible.

I realized when I 'teased' about electrical that there was that in our bodies, so checked it out but it's over my head, but is about the nerves.

I have no doubt something weird happened when i blacked out before i hit the ground-- Like "Oh no not me and a car again help!" (FEAR sets in and I block this out--almost a lifelong thing with some details "out of reach" )

You must realize how good it is to hear your thoughts after what I have encountered, knowing I am not lying, and your offer to think on this.

Last night i awakened with my nose jumping up and down but left it alone in case i never got back to sleep....it's like sniffing with both nostrils rising and lowering but it keeps going--up and down and up and down--"Bewitched".... or a bunny rabbit? Imagine doing that at the check-out counter!

xx
Izzy
EDIT--it is the slight pain in my thigh that sets off my nose---yes, true--so there was no need to invesigate, but this can happen sitting up when i might want to shift that leg.

[sKePTiKal]

Ah Iz... I wish....

that I hadn't been told to stop playing with my chemisty set... that I ust made a mess... (Liked making solids from liquids - magic!)
that I hadn't been told I was bad at math, but that's OK since I was "just a girl"... (it's not true anyway)
or that I hadn't been told it was too tough for girls to get jobs in science or medicine, unless I wanted to be a nurse. (Funny how I've worked in traditionally male job fields a lot of my life...)

I absolutely adore challenges and was one of those kids who'd knock herself out and SUCCEED if someone told me I couldn't do something. It woulda been nice, if anyone noticed other than me... but HEY, none of that BS is in my way now.

And hey - you're welcome too!   

I just had the weirdest, most wacky-mous idea that doesn't seem to have any rational reason behind it ... so if you don't wanna try this, you won't hurt my feelings! But I wonder if you found a way to "swaddle" yourself, if that kind of light compression or overall, consistent "touch"... if that wouldn't calm down some of the nerve issues and over time, "reset" the nerve programming? I'm thinking of maybe cotton knit leggings and a tight fitting long sleeve cotton t-shirt? It wouldn't restrict your necessary moving... but would provide that constant touch on the skin... which has the most nerves of any other place on your body.

Back in my "black hole" days, recovering from all that trauma, I used to wrap myself in a cocoon with a very, very heavy old quilt because the weight of it seemed to provide some elemental "comfort"...

[Izzy_*now*]

hi PR

Thanks for that idea, as it does make sense, in its own way and, in a bit, reminds me how pleasurabe it is to be tired go to bed, curl up in the fetal position, warmly covered and drift off to sleep, peacefully, with no rude awakenings. The fetal position came to me with my first accident 42 years ago, and I am not the only one. I have talked to others. (I've also read that adults doing that signifies a 'death wish'.)

But both are connectd to babyhood!

I have been testing many things in 2 years, food/liquid intake/output, when, how much. My journal is filled with all these details of pain, twitching, gnashing, (k)gnocking, outrageous dreams, medications/take/failure to take, incompetent treatment, therapy progression, re-learning the car, the tub, shopping, laundry, cleaning, cooking, dressing  ...differences 'before' and 'after'.  How I thought, for days and days, about a new way to make my bed from scratch.

Since I have been inventing things, why not try someone else's idea?

(switch "cotton knit leggings and a tight fitting long sleeve cotton t-shirt" for soft, close-fitting long-johns with a trap-door <tee-hee>)

thanks
xx
Izzy

[sKePTiKal]

LOL! Yeah, long johns were there in the original inspiration! But you don't see them much these days - maybe you do in Canada. We get a couple of catalogs (my hubs is a great "purchasing agent" and total shopaholic) - and the ones for lumberjacks, or hunting in the north woods still have them.

[Hopalong]

Morning, Miz ((((((((((Izz))))))))))),

Thinking of you this morning and hoping you have a peaceful, non-clattery day...and that if early spring is showing up where you are, it will hurry up for you.

I was just thinking about nerve issues, and wonder if you've thought about visiting the best-reputed acupuncturist in your area? There's something amazing about that science. Do you remember it began in this country because a doctor sent to China by the Nixon administration had an emergency appendectomy there, with no anesthesia other than the acupuncture? And felt no pain.

I think it should actually be called acu-poreture. Because "puncture" is far too intense a word for it. The needles are more like cilia...so very thin they kind of slip inside the pores. Anyway, I did it some years back and found it not painful, just a weird sensation. A little brisk at moments.

I was just thinking how much they know about the nervous system and pathways of pain. Perhaps a good acupuncturist would be able to calm this connection.

When/if you're ready to explore that.

love,
Hops

[lighter]

Hops, the acupuncture idea is good.... also a competent neuromuscular T might help.

lighter

[sKePTiKal]

And western medicine now officially recognizes (and therefore some insurance companies too) acupuncture as an effective "complimentary" treatment for some things - so there's a good chance it might for you, Iz.

You might even find your new doc will refer you for this kind of treatment.

[Izzy_*now*]

(from my Reply 15) I have though(t) of alternative sources, but want to go all the medical routes first, AND I always ask my lawyer what is permissible. (I just emailed him last night.)

So what I did in the meantime, ladies, is that I have been taking 1 more neurological pain pill at evening time =100mg morning noon night all along =300 mg and now 400 mg. The 'cap' is 1800 mg, and all I can say if I have that much to play around with I would be in a coma. I awakened yesterday at 4:16 PM with Karla due at 4:30 for therapy. I ran to the bathroom, came back for underwear and shorts, brushed my hair and clipped it back, made the bed for my level surface and she buzzed up!

We discussed this for ½ hr. while I woke up with a coffee, then did the therapy. All the tremors and tics had been gone since I started this, this past Saturday. Now I expect my lawyer to reply as to whether or not we still need an actual diagnosis, from a physiatrist, or what, because officially, as much as that has bothered me, loosened my teeth etc., it is still on the records as something I 'made up'.

I can now roll over on my tummy without a stabbing pain between my shoulder blades, but if it means 12 hrs/24 sleeping, hmmmmmmmmmmmmm !!

More adjustments to make!

Our health care covers the first 10 visits for a small fee and then full charge for the rest of the calendar year, then repeat the next year, etc.

Still hanging in and appreciating all ideas.

xx
izzy

[Izzy_*now*]

The tremors and gnashing still gone, but pain is there between shoulder blades (with the wrong moves just one 'stab',) and in my leg but only sharper at....ahem...times of pressure on the groin from a full bowel passing through. Those are the pains that would gnash my teeth, bunny my nose and make me sneer like Dick Cheney, at first, then worsened to daily everything flying around, and although they lessened, i still wanted an answer. Now they are gone and I still do.

I asked my lawyer, noting that my doctor had said I was "over-doctoring" and he said to go ahead anyway without the Dr.'s endorsement and that it wouldn't hurt my claim.

I am thinking that the more I do help myself the better it is for my claim.

I read of one guy who hurt his claim by just sitting around gaining weight and in not looking after himself and trying to do the best he could, he neglected himself, and his claim was less than expected under the other circumstances.

I can be cantankerous when tired, and I haven't slept since 12 noon yesterday. It is 1:45 pm now so that seems to be the 12 hour schedule for now, as I am going in to lie down. Karla was here for therapy at 9:00 then I went to the Library, wine store, mailed letters, to the bank, the drug store then $91.00 of groceries and back by 12:30. All is put away and expenses sorted etc, but I just know that I will fall asleep and there goes the rest of the day, but at least I accomplished a lot in a couple of hours, although ready to cry but couldn't--just soooooooo tired.

The acupuncturist I know is one for whom I built his website.....

Well it's 2:00 and just 10 hours until midnight.

[Hopalong]

Hour and a half to go to midnight, Izz....hoping you have a peaceful night, deep sleep, no pain if that is possible.

I feel very hopeful, about you knowing an acupuncturist.

Very.

Hope is the thing with feathers...

love,
Hops

[Izzy_*now*]

Karla and I went out to celebrate my 4 months today, and went to my Grateful Fed restaurant. The owner has been away since the snow disappeared  and when I came in the door he started to yell at me about "How many times are you going to keep coming back after I've had to throw you out twice?"...something about a wheelchair, so I knew it was me, but couldn't see who was yelling, just coming in out of the sunlight, but knew I was OK, as I hadn't been thrown out of anywhere. The other patrons were staring, not at me, but at HIM! and then he came to our table and we laughed about it.

Everybody went back to their own business and I realized I have learned something, ...to trust myself and what I know about me and not take anyody else's word (which I would do in spite of myself, before). This guy doesn't know me well but just well enough, I learned today, that I can take a joke.

Whew! The more I live the more I learn, and talking about learning....I can learn from Karla, being that she is a generation younger than I. That's that saying that we can always learn from others, and others can learn from us.

So this is one week now that all tremors and tics, shaking and clacking have stopped and now I have to rethink what is next.....while always being at the ready for other changes. My "pain journal" is close to 90 pages long!

Nap time
xx
Izzy

[Hopalong]

Musta been some other real wild-hair-in-a-chair in there one night, huh, Izz.
That's funny! Neat that you were taken aback but not offended.

(I'm still not entirely clear whether he was being, the way some do -- sort of exaggeratedly fake-UNfriendly because he was really wanting to jokingly welcome you -- or whether you're saying he really DID have to bounce a misbehavin' chair-wearin' patron prior to you?) Not that it matters.

Such a happy thing to hear you enjoying an excursion to the Grateful Fed. (Great bar name, btw...)

And this is just extraordinary news:

week now that all tremors and tics, shaking and clacking have stopped

Made my day! 

love,
Hops

[Izzy_*now*]

hi Hops,

Yes, I didn't make it clear. We 'know' each other, and he was teasing me; all the patrons just seem to turn out to be nice.

Yesterday I slightly bumped the chair behind me at that table, as I was slipping into my jacket. I said "I'm sorry. Please feel free to slap me if I ever do that again" and we both laughed. Total strangers.

Another guy who works there came to our table to welcome us---he and I have chatted-- plus they all might have recognized Karla too, as I told her about the place and that is where she took her sister when she came to town for the weekend. As happens, there is always a chair removed for me and sometimes, as happened yesterday, the gal was looking for a place to put it, all 3 got into it, and laughter ensued as it ended up being moved 3 times. Meanwhile I had easy access to our table. somtimes I drop in for a glass of wine--sometimes for take home food---sometimes eat there--- it has an outdoor patio and is where I've taken any friends who come to town and we meet for lunch.

"Don't speak too soon!" is an expression I often follow, because then the opposite happens. I mentioned all my tics, tremors etc. that I've had for almost 2 years, and how annoying and that I have to wait yet another 9 months for a Dr. and 'Hidy-Ho Bob's yer uncle' they all disappear before a week has gone by!  Are they suddenly healed? or making a liar out of me-- Just monitoring now, but slee...No, Don't Say That, Iz, You Almost Fool!

[lighter]

I think you're ornery, Iz, and the restaurant owner responded to it, with the "HOW many times I gotta throw you outa'here?"

But you already know that; )

I wish you didn't have to figure so much out on your own, with regard to your healing and symptoms, etc.

If I were speaking to those docs, and they said they didn't believe me, I'd remind them that they let me sit in agony, while my bone was grinding against steel and bone, and they did nothing for a very long time.  It seems their failures are always in your head, until it's impossible for them to blame and dismiss you.

Glad to hear the tics are better. 

[Izzy_*now*]

Hey lighter

You do know/understand that the restaurant owner and I were kidding, right?

Edit--Mar 22-- Whatever, what he said and I did was all in fun---- are you saying 'ornery' as a fact or just in fun
Please answer me, as I am not upset. Are you?

Love
izzy