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