I really need to talk tonight (very long)

[Guest guest]

Hello my dear friends, and newer members. Its me Dawn in Littleton. I have

had an extremely difficult year, and today was the topper. As you know I have

been dealing with this Molar/Rootcanal extraction for the last week, my pain

has been unbelievable even for me(high tolerance level). I did develop " Dry

Socket " to describe the pain, well I cant. By last night late the pain was so

severe I was in my chair in tears with heating pad on my face on Narcotics

with no relief whatsoever. Nick finally called early this AM and yet off to a

3rd Oral Surgeon for help since mine was not available.

The 2nd one I went to yesterday, man I cant tell you how awful it was, and we

are considering writing to the Board of Oral Surgeons about this. This man

came in, laid me straight back, as you know I cannot breath on my own this

way, he refused to help me, then whipped the chair up and said OK, now put

your head into the slot here, I said " I cannot move my body from this

position and I need a towel under my neck, he refused, I said sir I am

disabled can you not see this, so I rolled onto my side I have to IM

partially paralyzed on entire left side, I said fine is that better?, he said

let me look in there and proceeded to poke my gums in the Dry Socket, well I

naturally screamed, he got mad at me, yes mad and took some water in a

syringe and cleaned the socket, then said, OK you can swallow the rest of

the water.

People, I have severe dysphasia, I said no sir I cannot swallow this or I

WILL choke, will you lift me up to swallow it?, he would not, so I again had

to roll to my side and hoist my own body up in sheer pain. I swallowed and

he said " well I don't know if its dry socket call Monday if its still bad.

Well you know me. I was at tear level and said, OK " YOU SIT IN THIS

CHAIR " !!!!!, " I wouldn't come back here if you paid me to, and told the

nurse who looked about 15 that this guy was a total JERK! and I was reporting

him to someone for Obvious Discrimination, he sincerely would not lift a

finger to help me.

I came home in severe pain, I got my mail I saw a letter that was from my

Internal medicine Doctors office. This is the Doctor who has been with me

for 5 years, knows all my drug allergies, stood by me when her quack

Neurologist friend told me I was having all my symptoms because my brother

died of ALS. This is the Doctor who made sure I could see anyone I needed

to, any where and anytime. She never doubted I was severely ill , She never

was abrupt or rude, she loved and appreciated ALL the years I have spent

doing research on my disorders and disease's, and praised me so much as to

say " SHE WOULD HAVE ME!!!!, yes ME talk at a Neurological Conference because

I knew so much, what more respect could I have.

SHE IS GONE!!!!, I was devastated, staring at this letter in massive pain

after the horrible dentist, and she is leaving in two days this week, no more

medicine, my Dr. MARY IS GONE. I cared so much about this Doctor. She saved

my life, she has Always been the ONE Doctor I knew I could count on to help

me, and to respect me and all my efforts as a " GOOD Patient/Docotr

Relationship, losing her is like losing everything right now. I don't know

what I will do, I do not trust anyone else to take such good care of me.

Well, after sobbing about that and my pain and going to my 3rd Oral Surgeon

today, I cant even believe it, but of all the places at the Dentists office I

went into a Major Seizure, yes right there in the chiar it happened.

Fortunately this man was so kind and caring. He and nick gently held me so I

wouldn't hurt myself, I don't remember a lot of it, but I remember I couldn't

talk and when I looked at Nick and said " Oh no honey I gonna have one " !!.

This is about the 20th seizure Ive had in 7 years, I was just finally!! Given

the name of mine last year, they are Petit Mal Epileptic Seizures. My sister

has Grand Mal Seizures, total loss of conscious.

To say I was petrified is putting it mildly, I had swung my arms and legs so

hard that not only did my tooth hurt massively but my seizure was so violent

they said I had exhausted all my bodies functions. Of course IM still not on

any Seizure meds, IM allergic to just about EVERYTHING under the sun. My

nurse friend Sue told me today I needed a new EEG to see just how active they

are right now, and I needed Meds pronto or I would die possibly. Well, what

in the hell am I going to take? I cant take anything, I mean I am that 1% you

never hear about who has a severe enough Central Nervous system Allergy that

I require all my friends to have my info, I wear a necklace.

Well, just to add to my day I weighed myself, huge mistake huge! I lost a few

pounds, I have no few pounds to lose, if I lost now I will have nothing I can

lose after more surgery I will wither away.

You know Ive been reading a lot of the posts tonight, a lot of new people who

are undiagnosed, can I just tell you right now, " YOU DON'T WANT TO HAVE THIS

ACM, " you should not have ACM surgery to correct spine problems in my

opinion. If you are lucky enough to be " healed " with these surgeries that

were really designed for Chiari surgeries(Brain) then God Speed and God be

with you " , but Chiari is and can be extremely serious stuff, some of us have

some terribly complicated, illness such as SM. or SC or ACM AND Stenosis, or

BI, Squashed pituitary's, RSD, MS, Lupus, I mean nasty stuff that not only

can cause Fibro or Fatigue, but deadly stuff that will do more than you can

imagine. No one person can have ALL the things listed on the Lists of

symptoms, yet I see it over and over . I think beascue they want and need an

answer so badly and its wierd but " I HONESTLY KNOW HOW THAT FEELS, " but if

you without a doubt do not! Have ACM, be thankful, be grateful because it can

be scary for a lot of us. I personally have never once been diagnosed with

these other disorders, but I doubt they would know because I have so much

other shit in my body its ABSOLUTEY TERRIFYING " what they have told me in

going on inside my brain, my spine, my lungs, my eyes, its all bad.

I have received a lot of personal email that I haven't been able to respond

to, and many of those needing help this week. Now whether you have ACM or

not, I PROMISE I will try to help you in any way I can, because not knowing

is worse than it all sometimes, I will NEVER refuse to help anyone I really

mean that, I just need a few days here to mellow out, keep away from my

Oxygen tanks and get some pain management going here, and hopefuly no more

seizures for a while, I would like to make it to surgery without being on a

Slab first. IM counting on God whom IM quite upset and angry with right now,

and he knows it, but still loves me despite I am praying. Church

tomorrow.*** Please if you don't like anything Ive said, just leave me alone,

I cant and wont fight over words, and it probably just means you don't know

me and that's all, but IM a very caring person.

Dawn: married to wonderful husband , 2 daughters I adore, doggy Merlin

getting old and Dying before our eyes (love him)

my list: ACM / Syringomyelia/ Scoliosis/Asthma/ Reflex Sympathetic

Dystrophy/Pernicious Anemia/ Bilateral Partial Diaphragm Paralysis/ Genetic

Inherited Lung Disease/Hiatal Hernia/Partial Blindness right eye.

*awaiting more surgery April 10th

*awaiting to see if oldest child has ACM

*spent almost 2 years in Rehab to walk again

*own wheechiar//Forarm crutches/4 canes

* now use canes and trying to keep it that way

*dont want to live on Oxygen tanks rest of life

*counting on God to Heal Me FINALLY!!