RE: I passed frustration a long time ago

[Guest guest]

, you put into words what so many of us are thinking. research is the

only answer, and it is so slow in coming! Good luck with your new doctor.

Shari Ferbert

<<RE: wrote in part:>>

What frustrates me is there seems to be no help (other than groups

like this) for those of us who have been battling these medical

conditions for years. The only information I can find is stuff I have

been through so many times I am sick of it.

[Guest guest]

Hi , yes the frustration level can be astounding, and that they all

want to start from scratch when you know what doesn’t work, more so. My

particular problem is that the current batch of docs I am seeing do not want

to take ANY of my history (20+ years of ME) into account a all1 we have to

be pretty tough to wade through the BS to get care, if any is to be had at

all. Good on ya for knowing your own needs, and good luck with the new

rheumy. Aylwin xox

[Guest guest]

Hi :

I hear you!!!! Alot of us our walking in the same shoes

right with you!!!!! FRUSTRATION!!!

I also am very sensitive to medications. My biggest problem

which affects everything is sleep also!!! Ativan helps somewhat

[Guest guest]

Hi :

I hear you!!!! Alot of us our walking in the same shoes

right with you!!!!! FRUSTRATION!!!

I also am very sensitive to medications. My biggest problem

which affects everything is sleep also!!! Ativan helps somewhat

[Guest guest]

Hi ,

I can relate to the frustration. I hit the top of my enough meter on

Monday.

Take care of you. Big gentle huggles.

Di in Feasterville-Trevose, PA ) dimntd on AIM, IRC, ICQ & Yahoo! Messenger

Anxiety, Allergies & Sensitivities, Asthma, Bulging & Herniated Cervical Discs,

CAPD, Carpal Tunnel Syndrome, Cervical Spondylosis, Cervical Stenosis, CFS,

Chronic Lateral Instability & impinged nerve of the Left Ankle, CM, Depression,

Dyslexia, FM, Hypothyroidism, HS, LOCAH, MCS, Monocular Diplopia, OA, PCOS,

Post-Concussion Syndrome, Post-Traumatic Migraine, SAD, TBI and TMJ

wrote:

> I do not write often but always read the posts. I moved from far up

> north in the US to far south. I really needed the warm weather and

> the ability to swim more. The move has helped in that respect,

> however, I still continue to get steadily (although slowly) worse.

> What frustrates me is there seems to be no help (other than groups

> like this) for those of us who have been battling these medical

> conditions for years.

[Guest guest]

Hi ,

I can relate to the frustration. I hit the top of my enough meter on

Monday.

Take care of you. Big gentle huggles.

Di in Feasterville-Trevose, PA ) dimntd on AIM, IRC, ICQ & Yahoo! Messenger

Anxiety, Allergies & Sensitivities, Asthma, Bulging & Herniated Cervical Discs,

CAPD, Carpal Tunnel Syndrome, Cervical Spondylosis, Cervical Stenosis, CFS,

Chronic Lateral Instability & impinged nerve of the Left Ankle, CM, Depression,

Dyslexia, FM, Hypothyroidism, HS, LOCAH, MCS, Monocular Diplopia, OA, PCOS,

Post-Concussion Syndrome, Post-Traumatic Migraine, SAD, TBI and TMJ

wrote:

> I do not write often but always read the posts. I moved from far up

> north in the US to far south. I really needed the warm weather and

> the ability to swim more. The move has helped in that respect,

> however, I still continue to get steadily (although slowly) worse.

> What frustrates me is there seems to be no help (other than groups

> like this) for those of us who have been battling these medical

> conditions for years.

[Guest guest]

Aylwin

Perfect example of what I am talking about. I am sure everyone has a

point when they are so sick of battling doctors that they just quit

going. Of course you can only do that for so long when you really have

to go back. It is a doctors job to listen to 20 years of history. Isn't

that the first thing they do with new patients? I am in the mood to be

angry and will not have any patience with any new doctor that doesn't

listen to me. I know that may cause me to keep looking but I suppose

that is what I will do since I have to start over in a new place. There

are tons of doctors of all kinds out there and we shouldn't have to put

up with one that dismisses everything we have to report. I guess you

can all tell I am in a ranting mood. Thanks again for listening.

>

> Hi , yes the frustration level can be astounding, and that they

all

> want to start from scratch when you know what doesn't work, more so.

My

> particular problem is that the current batch of docs I am seeing do

not want

> to take ANY of my history (20+ years of ME) into account a all1 we

have to

> be pretty tough to wade through the BS to get care, if any is to be

had at

> all. Good on ya for knowing your own needs, and good luck with the new

> rheumy. Aylwin xox

>

[Guest guest]

Hi Di, I hope that enough meter has been reset at “low”! Hope you’re feeling

a little better. TC, Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Di )

Sent: Friday, October 26, 2007 11:14 PM

To: CFAlliance

Subject: Re: I passed frustration a long time ago

Hi ,

I can relate to the frustration. I hit the top of my enough meter on

Monday.

[Guest guest]

Actually , I did get so fed up with the docs that I did quit going

(except for routine) for about 10 years. It’s only since the megarelapse 18

mo’s ago that I have gone back into it. So far, no treatment…and it has

taken me this long to even get a neurologist appointment <sigh>. I’m pretty

well out of patience too! Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of

Sent: Saturday, October 27, 2007 7:32 AM

To: CFAlliance

Subject: Re: I passed frustration a long time ago

Aylwin

Perfect example of what I am talking about. I am sure everyone has a

point when they are so sick of battling doctors that they just quit

going.

[Guest guest]

The car accident Monday has put me at my limit. Today I woke up in a lot

of pain with a lot of symptoms. I am dealing with a lot of emotions and

anxiety any time I am in a car. I know things will get better though it

is hard to see that at times.

Take care of you. Big gentle huggles.

Di in Feasterville-Trevose, PA ) dimntd on AIM, IRC, ICQ & Yahoo! Messenger

MVA 11/22/1996 & 10/22/2007

Anxiety, Allergies & Sensitivities, Asthma, Bulging & Herniated Cervical Discs,

CAPD, Carpal Tunnel Syndrome, Cervical Spondylosis, Cervical Stenosis, CFS,

Chronic Lateral Instability & impinged nerve of the Left Ankle, CM, Depression,

Dyslexia, FM, Hypothyroidism, HS, LOCAH, MCS, Monocular Diplopia, OA, PCOS,

Post-Concussion Syndrome, Post-Traumatic Migraine, SAD, TBI and TMJ

J. Catchpole wrote:

> Hi Di, I hope that enough meter has been reset at “low”! Hope you’re feeling

> a little better. TC, Aylwin xox

[Guest guest]

Dear Di, I'm sorry that the accident was so hard on you. As you no doubt

know, stress is VERY hard on us types 'cuz we don't have the hormones

(cortisol) to deal with it. So a shock is a bigger shock to us. Just be

extra, extra gentle to yourself and rest up dear. You will feel better soon

I'm sure. XOX Aylwin

Re: I passed frustration a long time ago

The car accident Monday has put me at my limit. Today I woke up in a lot

of pain with a lot of symptoms. I am dealing with a lot of emotions and

anxiety any time I am in a car.

[Guest guest]

Hi Aylwin,

I hope you are doing well and your anniversary passes uneventfully.

I was not emotionally sound prior to the MVA. I was grieving and

dealing with the emotions. Mom found me after my CT scans sitting on a

bench in front of the hospital sobbing. Because the day was already off

to a great start the MVA was overwhelming. I was hit while down,

literally. My emotions are more even now and I am not feeling as

pessimistic.

I see my leg Orthopedist tomorrow. Sunday Mom & I will be leaving for

The Chiari Institute. I have all of the films & CDs they need.

Next weekend I will be leaving for burg for the Learning

Disabilities Association of Pennsylvania Annual Conference. I have been

a board member in some capacity since 1989 on my County Chapter. I do

not have any duties, most years Mom & I are the cashier at the book

store. I will be on hand to help out with questions and snags, I have

cashiering experience and am good with money. I can make sense of the

credit card machine should anything go wrong.

Low corticol is a symptom of Late Onset Congenital Adrenal Hyperplasia.

LOCAH makes even a slight adrenaline surge a major event. I have to

watch for an adrenal crisis, fortunately I don't seem to be prone to

them. It is similar to adrenal insufficiency.

Take care of you. Big gentle huggles.

Di in Feasterville-Trevose, PA )

dimntd on AIM, IRC, ICQ & Yahoo! Messenger

MVA 11/22/1996 & 10/22/2007

Diagnoses: Anxiety, Allergies & Sensitivities, Asthma, Bulging & Herniated

Cervical Discs, CAPD, Carpal Tunnel Syndrome, Cervical Spondylosis, Cervical

Stenosis, CFS, Chronic Lateral Instability & impinged nerve of the Left Ankle,

CM, Depression, Dyslexia, FM, Hypothyroidism, HS, LOCAH, MCS, Monocular

Diplopia, OA, PCOS, Post-Concussion Syndrome, Post-Traumatic Migraine, SAD, TBI

and TMJ

J. Catchpole wrote:

> Dear Di, I'm sorry that the accident was so hard on you. As you no doubt

> know, stress is VERY hard on us types 'cuz we don't have the hormones

> (cortisol) to deal with it. So a shock is a bigger shock to us. Just be

> extra, extra gentle to yourself and rest up dear. You will feel better soon

> I'm sure. XOX Aylwin

[Guest guest]

Hi Di Dear, yes I know you were really struggling, so no “reserve” (like we

ever have any LOL) to deal with a trauma. I’m glad that you are settling

again dear. TC, Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Di )

Sent: Tuesday, October 30, 2007 3:59 PM

To: CFAlliance

Subject: Re: I passed frustration a long time ago

Hi Aylwin,

I hope you are doing well and your anniversary passes uneventfully.

I was not emotionally sound prior to the MVA. I was grieving and

dealing with the emotions. Mom found me after my CT scans sitting on a

bench in front of the hospital sobbing.