Re: interesting phone call/Izzie

[Guest guest]

Izzie:

We've joked about that several times. I would love to meet you!!!

How is your back doing, have you gotten any answers yet?

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Re: interesting phone call

Sounds Terrific!!!

MAybe you should email the people on that show " Mystery Diagnosis " .. . It

might help people in the future. Maybe one day... who knows.

Hope that I will see you all at AJAO since I live in San Diego! LOL..

Issadora

On Jan 15, 2008 8:13 PM, nancy barnes <nancyb315 (DOT) com> wrote:

> Beth,

>

> I hope that you will finally get connected to the doctor that can properly

> diagnosis/treat Hannah.

>

> That's wonderful you have purchased your tickets for the conference! Did

> you decide if all of you are coming?

>

> Hope Hannah is doing okay.

>

> (, 17, poly, cvid, migraines)

>

> Beth Yohnk <yohnkmomsbcglobal (DOT) net <yohnkmom%40sbcglob al.net>> wrote: I

> received a call this evening from the head of our local EDS foundation. She

> is the friend of a friend. I shared with her our experiences with the

> rheumtology and pain clinic departments at our Children's hospital. She

> shared with me that this is the fourth similar experience she has heard in

> the last three months. She is also extremely involved in our local AF

> chapter and founded our local EDS foundation.

>

> She listened sympathetically to my story about Hannah (I was proud of

> myself for not losing it as I often do when I talk about Hannah like this).

> She is going to personally make some calls on our behalf and see if she can

> get me some names of doctors who would be willing to take on Hannah's

> challenging case (she said she contacts in Madison, Cincinnati & St. Louis).

> She agreed that Hannah is definitely not textbook. In fact she said Hannah

> sounds very similar to her own situation. She was diagnosed with EDS at the

> age of 29. It angered her when I told her that the pain clinic tried to tell

> us it " was in Hannah's head " and that I did not appreciated the doctor's

> egos in those departments.

>

> So, I will keep you all posted. On a side note, we are California bound,

> we bought our airline tickets on Sunday!

>

> Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma; gerd;

> migraines

>

> Sending prayers & happy thoughts,

> Beth :-)

>

>

[Guest guest]

I love that show... it's pretty fascinating.... I ussualy diagnoise the

Arthritis cases pretty fast.. hahaha... always makes me happy.... lol.

I hope I can make it to AJAO. I just don't know since I dont/can't work

right now and I hven't heard ONE word from SSI even though I had a hearing

over 6 months ago. That judge is taking his slowwwww sloooooow slooooow time

so basicaly, I'm just incredibly financialy strapped. If I make it to AJAO,

it would only be if something works out like the AF funds me if I can

somehow volunteer since I'm not that far away.. if they wanted to... or if I

end up finding friends to crash with.. LA isnt incredibly hard to get so so

we will see. I'm not really focusing over much on it and will just see what

happens.

In terms of my back.... I'm still waiting for this neurosurgeon referal to

take place. My primary is still awaiting the records from the ER and I

couldn't do anything to rush the process unless I got the records myself

which iof course.. costs money.. urgh.. so oh well. Have to wait.

My back is much better than it was however, it's still a big issue. The

stiffness is quite significant. I have so much spasticity and stiffness that

my mom can feel it in my back.. she says my back litteraly feels stiff and

hard.. and she can feel knots from all of the tightness in my muscles. I

have to keep the Morphine (oral Ms contin) in my system ever 12 hours.... if

i miss it... the pain can get really intense especialy in my low back and

the sciatic nerve gets kicked up... it actally affects me from my foot..

like if i mov emy foot the wrong way or even move my comforter with my foot

.... it will cause major pain in my low back.. and my legs just ache sooooo

much so with the pain meds.. I manage. I have breakthrough meds.. vicoden

but i wont take it because im hoinestly scared to take narcotics on top of

narcotics. I'm an advocate for pain control and even the use of narcotics

where appproriate but this scares me. The morphine is scary enough.. I just

can't take the viocoden on top of it no matter how much pain I get in. I

ussualy will take my sleep medication and just go to sleep versis taking the

pain meds! ha. My hands are becoming very irritable.. esp the tendons in my

right hand. The doctor said I have 'tendonitis " but gave me no ideas for

dealing with it so blah.. all i know is that my thumb is really bothering me

and the palm area near my thumb is puffy and inflammed. I can see it and it

hurts if i grip stuff. The veins are real bluish and noticable in the light

than they were before .. so i dont know whats going on.

Okay so that was a really really reall loooooonng response.. hahaha.

Im still hanging in there. I might possibly have a job prospect .. a woek

from home type so we will see. I find out more tomorrow so time will tell.

I'm slightly excited about this but not sure.. I just feel pretty limited

right now.

Someone sent me a book about people living with chronic illness Called

Strong at the Broken Places. So far it's good.. Im reading about this woman

with ALS which is horrid. I had a neighbor that died from that and it just

was painful to watch him progress to death. Sigh.. it sucks.

Okay... im chattery... lol..

Hugs... can't wait to see how these appointments go for Hannah!

Issadora

On Jan 16, 2008 5:25 AM, Beth Yohnk <yohnkmom@...> wrote:

> Izzie:

> We've joked about that several times. I would love to meet you!!!

>

> How is your back doing, have you gotten any answers yet?

>

> Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

>

> Sending prayers & happy thoughts,

> Beth :-)

>

> Re: interesting phone call

>

> Sounds Terrific!!!

>

> MAybe you should email the people on that show " Mystery Diagnosis " .. .

> It

> might help people in the future. Maybe one day... who knows.

>

> Hope that I will see you all at AJAO since I live in San Diego! LOL..

>

> Issadora

>

> On Jan 15, 2008 8:13 PM, nancy barnes <nancyb315 (DOT) com> wrote:

>

> > Beth,

> >

> > I hope that you will finally get connected to the doctor that can

> properly

> > diagnosis/treat Hannah.

> >

> > That's wonderful you have purchased your tickets for the conference! Did

> > you decide if all of you are coming?

> >

> > Hope Hannah is doing okay.

> >

> > (, 17, poly, cvid, migraines)

> >

> > Beth Yohnk <yohnkmomsbcglobal (DOT) net <yohnkmom%40sbcglob al.net>> wrote:

> I

> > received a call this evening from the head of our local EDS foundation.

> She

> > is the friend of a friend. I shared with her our experiences with the

> > rheumtology and pain clinic departments at our Children's hospital. She

> > shared with me that this is the fourth similar experience she has heard

> in

> > the last three months. She is also extremely involved in our local AF

> > chapter and founded our local EDS foundation.

> >

> > She listened sympathetically to my story about Hannah (I was proud of

> > myself for not losing it as I often do when I talk about Hannah like

> this).

> > She is going to personally make some calls on our behalf and see if she

> can

> > get me some names of doctors who would be willing to take on Hannah's

> > challenging case (she said she contacts in Madison, Cincinnati & St.

> Louis).

> > She agreed that Hannah is definitely not textbook. In fact she said

> Hannah

> > sounds very similar to her own situation. She was diagnosed with EDS at

> the

> > age of 29. It angered her when I told her that the pain clinic tried to

> tell

> > us it " was in Hannah's head " and that I did not appreciated the doctor's

> > egos in those departments.

> >

> > So, I will keep you all posted. On a side note, we are California bound,

> > we bought our airline tickets on Sunday!

> >

> > Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma; gerd;

> > migraines

> >

> > Sending prayers & happy thoughts,

> > Beth :-)

> >

> >