Friday, November 7, 2008

ooh it's a tourettes day ! i could cuss and cuss and cuss

and maybe i will.
i tried to post yesterday, but got nowhere. a couple pics but no words came.. then i just gave up.
i'm pushin three weeks bein trapped in this house.. useless, and in pain.

yesterday , soulkid missed the bus for school.. hubby was working, and i was in no condition to drive. i can't turn my head, i can't hardly move from the shoulders up at all. i have been down to my last few pain pills for the last few days, and watching them dwindle makes me afraid to take them. seems nobody wants to rx any more. i've always found it to be sooo much crap-- and i know several of you can relate-- the way the damn doctors would rather let a person hurt than give them meds. i will never understand that. i mean i do-- i know junkies have ruined it for people who really need meds. but dammit, this is ridiculous.

i have been calling my neuro doc for the last two days for refills-- for like 5 months or so-- he has had no problem refilling pain meds. he has lowered the dose and amount-- but still, i can pretty much count on him to keep me as pain free as possible--without either of us lookin too bad.
but, i don't know which he is more afraid of lately-- since the clot--- addiction, or just not knowing what exactly is wrong. but he will not refill my meds. i know he has called my doc, and got my hospital records, and i know he knows how many meds he-and other docs have given me over the last few weeks. what he DOESN'T know- is that i puked everythig up for 2-3 days- or the extent of pain i am in.

i'm not kiddin when i say this is the worst pain i have ever felt in my life-- my husband and daughter both have cried -right along with me---watching me hurt so damn bad, and be brought to tears myself thru this. and neither can actually do anything about it. but they do try.

soulman finally understands my frustration i have been in all these years trying to get a dr who is not afraid of pain rx's. he hates to see me like this. he is as angry as i have ever been at ALL my docs i see now too. and he agrees that i am not drug seeking, nor do i get high off any of it.
(although i will admit, he too has been concerned at times-- but thru this-- he ses-- i just don't get stoned on it-- i'm lucky if it reduces the pain, much less gives me a feel good.)

i don't know what's up with this tolerance shit of mine-- but really-- motrin makes my hubbys "hair crawl" -- while even demerol, didn't gimmee a buzz-- or even touch the pain without taking 2-3 times the dose i was ordered. and even then it only brought it to a tolerable level. which i would pay at this moment illegally for--if only i were smart-- or dumb enough -- to know where to go for it.
i think anyone -- without a license would actually. i have even had a couploe offers-- but-- as y'all know-- all my peeps live in the puter--- and anyone else i may know-- well.. they just dont do that type of thing. or know where to get it.


i do have to drive today for the first time out of the hospital. before that actually. i really haven't driven much at all since the july seizure. none at all since the 18th or so. and i still wonder if the lack of oxygen had anything to do with those damned things. will anyone tell me? does anyone know? does anyone even friggin care? i just cannot fathom being a "doctor" and leaving anyone in such pain. it's ridiculous!

if i see the neuro today, (which only depends on my driving ability)- and he doesn't find anything-- or help me.. i will again go to the emergency room. it is truly my last resort. i hate the mere idea of sitting in an ER waiting room for hours-- or worse-- gettin "bad" news alone there. but something is going on with me. and it just cannot continue.

so-- IF i do end up admitted again.. soulman will let ya know-- and if anything else happens-- like an rx--or diagnosis..i will let ya know.

i told hubby last night-- how much i do not want to go to the hospital again-- but also i cannot remain in pain like this. he agrees. besides, it's not like i am of any damn use to anyone here anyhow, i can't do a damn thing. well except sit around and wait to clot again. and i can't help but to say it is a concern.. i am very limited as far as mobility goes. i try to get up and move around when i can-- put the dogs in and out-- walk around the house, etc. stuff to just be moving. but there's not a whole lot ya can do confined to home. remember i counted down days last time? that has now become like 19 to 20 days--? my gawd. it's awful.

i'm sorry, i really don't mean to be whining. maybe i'm just looking or waiting for someone to come across this page and tell me they have been here--and they KNOW what is wrong, and how to fix it-- cuz nobody else does.
a friend and i have been joking about how i need "House"-and his team.. to work on me-- i'd be healed in a week!

i have spent too much time on google again. and i swear it can be my worst enemy at times.
i look up swollen/enlarged thyroid with pain-- cancer comes up-- i look up neck pain with jaw and ear and thyroid swelling-plus frequent migraine- i find that hmmm perhaps its a clot headed to the brain. it is insane-- and should NOT be MY job to diagnose myself when i am sending out hundreds and thousands of dollars to find out wtf is wrong.

remember the guy from the band hanson? yes i should be embarrassed to admit i listen to them, but i like em. ok some of their stuff. but not long ago, the lead guy--and he's young..mid 20's if that-- he almost died from a clot in his arm.. same type of pain i am having now.arm, shoulder, neck etc. still, none of three or four docs i have seen for this shit seems to want to go further--they want to call me a drug seeker--and leave me in pain. and it sooo pisses me off.

yes, the amount of meds i have gone thru in a couple weeks is staggering-- but the thing is-- i really , honestly do not get high on it--and that is why i get so damn upset when i get treated like a damn junky. and get refused meds. instead i am left to cry in pain-- and not only that-- fear and shame-- of someone even thinkin such a thing.

but-- i will admit-- once again, i am an alcoholic-- (dry at this time)- and can't help but wonder if there's pain relief in a bottle of booze??? but then i realize-- not an option. dammit. it used to work on gunshot wounds, and even labor pains, back in the old days. surly i could get relief --at least physically-- that way. but obviously-- i have reached the point that the pain, and isolation etc, is affecting my friggin mind again. and it is just not right.

so-- i'm just pissed off and in pain today-- and soooo awfully afraid to drive today. but i have no choice. soulman has missed soooo much work due to me and soulkid and hospitals he is a blesed man to still have a job, otherwise he would drive me today. he always does or has when possible. just today-- it isn't possible.

i guess on the bright side-- there is no ice or snow on the road. maybe if i just stay on the far right lane and drive slow til i get there i wont have to turn my head or worry too much about a wreck. i spose we shall see.

if he doesn't help me with meds--or a diagnosis-- or better yet a cure or answers at neuro--- i have absolutely had it. i will be forced to do like yesterday-- for how-ever-long-- and remain knocked out on xanax and muscle relaxers. i slept the day away yesterday. it was all i could do. i was down to four pain pills-- this am, after a dose of two-- i have two left. i will need them for the drive to the dr. after that-- if he rx's nothing? i'll be living my life asleep. because i just cannot take this shit any-- f'n-- mo!!!

so anyhow--- i spose that's my whine, crybaby, rant for the moment. i wish i could be more positive. it's just so very hard to be in this situation. 80 percent of my stress would be less if i had less pain and someone to drive me to the doc today.
instead-- i am falling apart, thinkin the worst.. and just want it over.

so yep--- anyways-- that's all i got for now. and i'm sure you've heard enough anyhow.

i hope you all have good and happy days in your worlds today---
still thinkin of all of you lots-- just not gettin everywhere i want to in blogland lately.

if anybody's prayin.. you know me and my pal jamie -and her girl could use a few.
and i bet if i was gettin around more-- some more of my friends out there could use one too.--

so anways-- i am gone--as soul dad and soul kid are havin ww3 about chores undone.
and it makes me hurt--im gonna go hide in the shower.

bye bye.

15 comments:

Jamie said...

SOMEONE has to listen to you and find out what the hell the problem is. I will be waiting for a call to know what the neuro says. Hang in. Love ya. xo

Jamie said...

FIRST!! :)

Mary said...

I wish I were there to drive you to your appointment. I've had health problems and pain but I've never had to deal with the hell you're in. Your medical team (if you can call them that) doesn't seem to be able to find the problem or even address the pain.

(The following paragraph is about my experience with a bad medical team. Just don't read it if you don't feel like it. I won't be insulted.) Just remember that I'm praying for you and your family.

I know you need relief not suggestions but you know me - Have you and hubby considered contacting a hospital such as Duke? When I was in my 30's my then doctor told me I had lukemia and began treatment. That was a horror story in itself. As a last resort I called Duke, got an appointment, was in their hospital for 3 weeks, and came home weak but pain free. I didn't have lukemia - it was a wierd type of anemia having to do with my spleen. I didn't like the treatment but it did solve the problem.

The Real Mother Hen said...

Soul, if it doesn't get better, ditch the doctors and find another one in a different hospital - in fact go to ER in a different hospital. This has been going on for too long, and if they can't figure it out, ask them to go fly a kite.

You are in America, not in Africa. The way they treat you as if you are being left alone in Antarctica. It makes my blood boil.

Meanwhile, rest well. Spend the day resting. Don't do anything. Don't even TRY to think about it. Focus on getting better first.

ac said...

this post made me think of something Ed said to me when he was in pain. He was taking handfuls of pain meds and driving and I got up the nerve to ask him one day if he should be driving behind all that stuff. He said 'Babe, when a person has serious pain the meds go only to the pain. You can't get high if your pain level is off the charts. (who knew!) You only get high if you don't have pain for the meds to treat.' I will never forget that. Good luck at the neuro today! I'll be thinking about you and hoping you get some rx and some answers. xoxoxo ac

Brad said...

I think Mary and TRMH's advice is good - If they can't help it's time to move on. - I wish I was there to take you to the Dr's - I'll be thinking of you. If you can't post later would you ask Jamie to drop me a note on how today went?

Love you baby!

Anonymous said...

This has gone on far too long...not knowing how the med / ins system works over there anymore..is it not possible just to drop wherever you're presently going to and try a totally different place? The "team" you've got now is totally useless...I'd make the switch and quick! I know it's a lot of trouble..but well may be worth it in the end.

WaterLearner said...

You have been in this pain for so very long. Try seeking second opinion.

You would be in my prayers!!!

Fleur de Bee said...

Thanks for the referal of the "eye candy" you gave over on JLee's blog...giggling here!

xoxo (ballerinagurl)

Raine said...

Well they already said it, go to ER.There is no need for you to suffer that way. I'm sorry you are going thru this. ((((((Soul)))))

Summer said...

Mary just might be right. Time for a "new" opinion.

Smocha said...

Where are you???

I hate to burst your bubble even further, but I believe all the Er's have a link to "who has been given which narcotics"
Unfortunately , you have become immune to most pain meds and they are just NOT going to keep giving you heavier and heavier ones ,until something works.

As far as WHY are you still in this much pain ? Is this from the bloodclot? THAT you should go to the ER about .For answers though .

I would rather see you drinking a few drinks every night than suffering like this.

There's my 2 cents :)

Love me

Golden To Silver Val said...

Soul, this is an effin' crying shame. Personally, I think it may be time to contact the news media. The way you have been treated is absolutely inhuman. Up here, every one of our local TV stations have a section of their news programs dedicated to "trouble shooting" or as one stations calls it, "the hall of shame". They uncover injustices being done, usually by companies, to the average citizen. But I think your dilemma may fall into that category. At least it will make the general public aware of the downfalls of our medical society. You have slipped through the cracks...they treat genuine addicts better than you've been treated. They, at least, are given methadone to help with their pain of withdrawals. You have a legitimate illness that no one seems to want to isolate and treat. Get your local State representative involved if you have to. Don't take this laying down any longer. You have THE RIGHT to be treated so you aren't in constant pain. You have THE RIGHT to have the same medical attention as anyone else. Its time to start rattling the chains on the cages.
I'm praying for you....and also praying that you can find someone of power and authority to go to bat for you! Don't wait any longer!!Big hugs. Love Charlotte

desert dirt diva said...

I have know idea how to help with the pain, wish i did, but my sister who has R A and extreme back pain was getting the extra meds she needed from the internet, and yes they were the same things the dr.s give you, and i guess they deliver right to your door....just google online pharmcies...hope this helps ..
and then of course what everyone else said..
take care

Anonymous said...

as to the pain you are havin I think you should be tryin silver water and if you like you could write back to me at afapowell28@sympatico.ca and I shall try and stear you in the right direction as I am very open minded on this issue I make and use silver water myself and know of other cases I am in Canada also so mayb I can help
thanks Frank