Hi To All..and Again Sorry For Being So Remiss In Posting!!

[Guest guest]

Boy it sure does seem like a long time since I've posted. Please

forgive me on that but I've been VERY sick basically since last

August.

Just to fill you in briefly on my SSDI and Fed Empl Disability

Retirement status. We're starting to run out of money and only have

enough to pay the mortgage until April...hubby makes enough to pay

for everything BUT the mortgage and you may or may not recall that

we had to refinance our house and just pay the mortgage out of

that. Well, that's almost gone now....SSDI is and I quote " on the

fence " regarding a decision as to my eligibility...the case worker

called me last week and said so and said he was looking thru my file

and found the stuff on the fact that I also suffer from panic

disorder. He sort of said so w/o saying so if you know what I mean

that it " may help me to go see a psychiatrist of their choosing (of

course!) and tell him/her that the two problems panic disorder and

pancreatic problems/SOD sort of " play off of each other. " I agreed

that this is in fact the case (although nowhere in either

application pkg (SSDI or my application for the Federal Employee's

Disability Retirement that I'm eligible for) did I so state. But,

it has become the case that the panic becomes a real issue if I feel

I'm going to have a bad panc attack and the panc problem gets worse

because of the panic/anxiety/stress that that causes. I told him

this and he agreed that it may help to get them " off of the fence "

on a decision if I go to a psychiatrist and tell him/or just that.

He thinks that will basically " cement " a decision because I couldn't

possibly work a job if that is the case....also a true statement.

So, I'm now waiting for the letter telling me where I need to go, to

who, etc. He said they'd also pay for a cab if I was too sick to

drive myself there so I'll definitely take advantage of that offer.

As to the Fed Empls Disability Retirement, I just today got a letter

saying that the sort of " field office " if you will in PA had

received my pkg on January 10th. They have now forwarded or are

about to forward it to the Office of Personnel Management (OPM)

office in Wash, DC. It basically just gave me a case number warning

me that this didn't mean I'd been approved or disapproved

basically. When I got the letter from the SSDI office..I panicked

so much (even though I remembered my personnel office's rep at my

job here locally (government lab and I haven't worked since last

July) had warned me that SSDI may totally disapprove me but that

didn't mean that I'd be disapproved by the Fed Empl Dis.

Retirement)....she actually told me that with SSDI being as they

called it " on the fence " was actually an encouraging sign....that if

THEY are on the fence then since the Fed one makes it's decision

based on " can do her old job " (NOT ANY job in the whole wide

world - as SSDI does in making their determination) then it almost

sounded to her that I will in all likelihood be approved by the Fed

Empl's Disability Retirement. I told her that I was basically just

panicking and needed reassurance....and she laughed and said that's

what they are there for. I've known her for years and she has been

my personnel rep since I started there in 1987. I wrote my own

cover letter to both offices explaining what this illness does to me

on a daily basis, etc., and how much I loved my job and hated to

leave it, etc. I sure hope it helps in both places.

Anyway, I just wanted to keep in touch with you all. I've been VERY

sick since I got the sphincterotomies back in August and am now

going to a third GI doc on Friday that I have high hopes for as the

nurse at the pain mgmt place that I'm going to now said it is her

family's GI for years and he is also an endoscopist which helps. The

fact that she and her family love him and the fact that he is an

endoscopist and only about a 5 min. drive from door to door helped

me make that decision as well. I am scheduled for a second celiac

block on 2 February. In retrospect, while I didn't think it helped

me much at the time (I got about 3-4 days relief and then right back

to where I started)...I DO think it has helped me stay out of the

ER.

My PCP is also (after apparently having a moment of total lucidity!!

Like the lightbulb went off in his head after nearly a yr of this!)

for some reason having me tested for a disease called

Porphyria....and I quote " just a hunch I had, probably won't pan out

so don't get all excited or stressed out by it. " Apparently the

disease can cause severe abdominal pain, joint pain, severe fatigue,

etc. All of which I'm having of late. They collected a 24 hr urine

specimen(ha!! I FEEL like a specimen these days) and still haven't

received any results and it's been a week. Called them (PCP's

office) today and they said nothing yet. I also told them about how

I'm sleeping almost 24/7 lately....sometimes I'm up all night and

can't sleep at all and/or I sleep for 3 days almost straight thru.

I've got terrible joint pain, shoulder pain, double vision,

weakness, and edema in addition to the panc problems and the

nausea. The edema has caused me to have ankles that are almost 3

times their normal size. Tonight I had complete numbness on the

right side of my face. So, I will mention that to them tomorrow as

well. don't know what all of these new symptoms are in addition to

the awful nausea (not as bad as the 8 day stint I went thru a

couple of months ago though when I finally figured out that

constipation can cause such SEVERE nausea......awful!! but of

course, had to figure that out on my own as well.)

Well, I sure hope this finds all of you having a good day (or night,

it's 12:30pm EST!!)

With warmest wishes for you all