Elusive Recovery - Will it ever come?

[Guest guest]

Hello Friends,

It has been five days since I was released from the hospital, 14

days since the onset of my recent acute attack, and I'm so

discouraged and frustrated in the fact that I still haven't had any

noticeable improvement in my pain levels, food tolerances or

ability to get back on my feet. I'm still miserably bedridden, and

have had to take my breakthrough pain medication no more than

every 4 hours, day and night, to get the pain to even barely

tolerable levels! GRRRRRR!

A couple days I felt well enough to get up and putter around the

house, and was even able to cook dinner twice, with

intermissions to lie down between start and completion. But I've

found that I can only handle about 1 -1 1/2 hours, tops, standing

upright or sitting upright in a chair, before the extreme back pain

and stabbing abdomen pain throw me right back into a reclining

position in bed, with the heating pad set full blast against my

screaming mid back to shoulderblade pain. In regard to the

abdominal pain, in the past I'd always used the heating pad for

relief. I had it with me in Belize and was using it when the attack

began, but after Bob called my doctor in Savannah, he advised

an ice pack, insulated in a towel, for the abdominal pain and

swelling. I had never done this before. Bob talked the bartender

at the inn into parting with some of their valuable ice and

prepared an ice pack for me, and I will say that it brought

tremendous abdominal relief, much more than the heating pad

did. Just a tip to remember when one of those violent episodes

hit.

We have the laptop set up on a 4 legged bedtray I bought several

years ago for my SIL's bedridden recovery when she lived with

us for a year after her ordeals at MUSC. I kept it, thinking that

she might have need for it here sometime in the future, never

thinking that I would be the bedridden one! It has come in most

handy, because it lets me keep up with all my internet needs

without having to sit up at the computer at the desk. And now I'm

using it for meals, too....when I can eat.

The underlying nausea persists, and since I wasn't prescribed

any nausea medication, I've been using the old sliver of

gingeroot in the gums trick, and this has worked very well. But I

just don't FEEL like eating, and each attempt with real food has

brought tremendous after-meal pain, even with limiting the fat

quantities to 3 grams or less. This has been so discouraging!

So I'm back to eating lots of mashed potatos and sugar-free

pudding and that old favorite, (yuck) sugar-free jello!

Fortunately, my BG's have cooperated and been fine, but I think

that's probably because I'm not eating much at all. My weight's

dropped another eight pounds, so I'm down to 110 (again).

When will this misery end? I've been doing some research and

have read that the pain continues in an agressive manner as

long as the pseudocysts are inflamed and still enlarging. Based

on my levels of pain, I do believe that this pseudocyst is still on

it's way up, instead of remaining stable and maturing as we had

hoped. In the past, the pain has always settled down and

become less consistant as the pseudocysts matured. Since I

haven't had any relief from the intense pain, yet, I can only

assume that it's still growing, but I'm getting really tired of this

incessant gnawing, piercing pain every single day.

I'm seeing my GI Monday, and the surgeon Tuesday, so hope to

have some updates on the pancreatic specialist consultations

and surgery plans then. Oh, and my insurance company, BC/BS,

called Tuesday and has placed me into their care management

program because of my excessive medical bills. This is a

program they offer for people with a history of extensive medical

claims. They appoint one representative that will work with me

exclusively, to help me with all my claims, questions about

approvals for hospitalizations, procedures, etc., designed to

make it easier for me, and to help expedite everything. That

sounds good to me.

Getting all my whining off my chest really helps. I really need a

sounding board, but have gotten to the point where I hate to do

nothing but complain to my husband and kids, who are calling

EVERY day now, checking on me. I'm so tired of bothering them

with my complaints, since I know I have been very much a self

absorbed, whining patient that they must be tired of my boo-hoos

all the time. But I've never experienced such a looonnng after

hospital session of pain like this, this has been the worst pain

I've had to put up with so far, and I desperately want it to end! If I

could just get rid of these #@** & ## pseudocysts, all the pain

would be gone! Thanks for listening, I just had to get my

frustration off my chest!

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.