Re: I'm still here

From: Millie (milliem@citlink.net)
Sat Jun 7 18:21:42 2003


Karla, I had recently asked someone if they heard how you were doing. Glad you got on that trip! Don't worry about swimming with the passport... I can't even swim! Congrats to all of you on the new grandbaby! Glad to see your post! Millie.

>----- Original Message -----
From: "Karla" <ifirgit@yahoo.com> To: "Multiple recipients of list ADHESIONS" <adhesions@mail.medispecialty.com> Sent: Saturday, June 07, 2003 12:19 AM Subject: I'm still here

> Hello to everybody!
>
> I have not posted in quite some time, but I wanted to let everyone know
> that I am still here and am able to help...in a limited capacity.
>
> Where have I been? Well, you all know how sick I was...well any of the
> oldtimers that might still be around (where is everyone???). I had an
> opportunity present itself to me in mid-March and I decided to jump at
> the chance...regardless of what the outcome might be for my own
> individual case. Anyway, I happened to stop at Bev's house one
> afternoon to learn that she would be going to Amsterdam in early April
> for a conference that was entirely focuesed on adhesions. She was
> traveling alone and my mind of course started thinking back quite a few
> years to my younger days when I visited Amsterdam and fell in love with
> the country...I would do anything to get back there. I decided that
> same afternoon that I was going to go come hell or high water. (It was
> almost hell getting there as my doctor told me about a week beforehand
> that I would not be able to go...at least not until I had a scope
> done...the results were pretty good thankfully.)
>
> Bev and I made the long trip over and ended up staying at a most
> wonderful hotel that dated back to the 1600's. It was located along the
> canal routes and was absolutely incredible. I did bring along some of
> my medical records...in hopes of presenting them to someone and getting
> their personal opinion of my case. While I did not learn any favorable
> information to help me out, I did learn a lot about adhesions and the
> work being done to find a solution. (By the way, my own personal
> opinion still is entirely favorable to using Spraygel.) I also had the
> opportunity to meet a most incredible individual, Dr. David Wiseman;
> the founder of this website. We had the opportunity to discuss things,
> but I only wish that our time together had been longer so that I could
> have found ways in which I, personally, could help the IAS out. I am
> forever grateful to Dr. Wiseman for making this site available to me,
> even though my personal participation has been greatly limited of late.
>
> Our trip to Amsterdam was in the height of the SARS epidemic and my
> doctor and I felt it best that I wear a mask during the flights to and
> from. However, I did feel extremely uncomfortable with the stares that
> were directed my way. But, if it meant that I would not be at any risk
> to be exposed, I would gladly put up with it.
>
> Two days after my return home, my sister and I flew down to Miami for a
> couple of days before we boarded a cruise to St. Maarten, Martinique
> and Barbados. My sister had given the cruise to me after I came off of
> the respirator in January. We used this trip as incentive for me to
> make it through all of my subsequent hospitalizations and even when the
> doctor told my sister and later me that I would not make it on the trip,
> I was determined that I was going. The trip was not without its scary
> moments. After we arrived in Miami, my hands (my fingers too...but for
> the only time other than when I was on the respirator my hands) swelled
> up a lot. My urine turned black or at other times very bloody, but I
> was bound and determined that I was going to make it thru the 8 day
> cruise. I came to realize that I could not sit out in the sun around
> the pool. It was too hot for me, so while my sister and the others
> sunbathed, I took naps. I would also go to bed after dinner each
> night...ours was the late meal and we were never done before 10:30 so
> there was never any "nightlife" for me, but that did not bother me at
> all. I was able to visit each island and take in a few excursions. I
> was even able to go snorkeling in St. Maarten, even though I jumped
> into the water wearing my passport around my neck. Snorkeling was a
> first for me (well, I had done a tiny bit a few years ago in Key West,
> but so little I wouldn't call it snorkeling.) and was the highlight of
> the cruise. The brilliantly colored fish and coral was absolutely
> amazing.
>
> I returned home having successfully completing the cruise, to my
> doctor's amazement, but was quickly hospitalized to try and resolve the
> issue with my kidneys. I have been hospitalized several times since my
> return and this week my pcp informed me that my kidneys are now
> beginning to show signs of significant damage. He explained to me (and
> I still don't really understand) that my kidneys are so enlarged now
> that they are, in addition to my adhesions, preventing my bowels from
> functioning properly. I have been having problems with severe, severe
> lower abdominal pain and vomiting every day. When I vomit, it is
> undigested food from the prior day. He explained that the size of my
> kidneys is preventing the food from properly working its way throughout
> my intestines. Its almost like an obstruction. I was told that this is
> only going to get worse. He put me on Reglan to try and help things
> work there way thru better while at the same time stopping the vomiting.
> I never feel nauseated. It just comes without notice.
>
> The two of us, my doctor and I, had a discussion and he told me that he
> was glad to see that I was getting out once in awhile (he had ran into
> me at the theatre....my first movie in over a year) and asked me if I
> liked to travel, which I do. He encouraged me to keep traveling, that
> it was good for me in that it keeps my spirits up despite my worsening
> condition. Its really kind of scary. Anything and everything that I
> ask for he will give me. He even asked me if I wanted him to increase
> my morphine doseage, which I gratefully declined. As bad as it is, I
> still want to function. I want to remember without any fogginess the
> highlights of my life, which my grandchildren are so much a part of.
>
> The other thing that has happened in the last couple of months is that
> my daughter gave birth (while I was on the cruise) to my second
> grandson....Brennan Steven Karl (that's for me!!!! Even though I feel
> sorry for the child)Cyr. He is the apple of his mom's eye, but she
> lives each day in fear that she, for some reason, will lose him as she
> did his brother two years ago. The likelihood of that happening is so
> infintessimally small, but the fears are still there. She thought that
> she had gotten through all of the stages of grief, but as I had thought,
> a lot was shoved to the backburner. She will get through it though.
>
> Well, thats an update of my life. I'm hoping to see some of the
> oldtimers posting. Not that I do not welcome the new people....I just
> don't know anyone anymore. Please feel free to read my story on the
> quilt. You will understand why I cannot post much anymore.
>
> God's blessings to all!
>
> Karla
>


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