For your listening pleasure while you read I have
installed 12 MIDI songs. Look at the top right of this page. If you want to listen, choose a song from
the drop-down menu then click PLAY. To stop the music, return to Click for
music. To change songs, simply choose and click play. Each page will load with
this menu, and I will be adding more songs soon. If you want the code,
email me and I will send it to you, if you try to take it from the page
it will be all screwed up on your page as I have modified it to fit my needs.
Thanks for being interested enough to read my story. I am not going to make it a full length novel, so don't worry, it won't take too long.
My name is Sandi, and I am now 42 years old and the single parent of one 14 year old too-wise-for-her-own-good typical teenage daughter.
Looking back, I have had bowel problems most of my life. The farthest back I remember was in the early 80's when I was in my early 20's. I got pretty sick once and the doctor said it was Gastroenteritis. OK, didn't know what that was, really didn't care, just took my pills and stayed in bed a few days and all was well again. On and off this happened, but I thought it was because I liked my beer. Sometimes a little too much. By the time I was 28 and had my child, I had already quit drinking and my mother was dying. The bowels went whacky again but the doctor said it must be from the stress I was under having a newborn and a dying mother and trying to work and go to college all at the same time. So I quit my job and dropped out of college, took the pills he gave me and everything seemed to get back on track again.
Everything seemed to go along ok until about 1998, when I began to get fever, chills, abdominal pain, diarrhea and a peculiar reb lump on my left leg near my ankle. I thought I got bit by something and thought nothing of it. When the sickness didn't go away and got much. much worse, I went to the emergency room where they told me I had sepsis (blood poisoning) and a bacterial infection in my intestines. OK, then I aksed them about the lump, they said it looked like a spider bite and it could be why I was so sick. Sounded good to me, so a few hours on IV antibiotics and a script to take home and I was off and running again.
It happened again in 1999, with another one of those peculiar lumps on my leg,
in a different spot but close to the first. This one turned purple, got a
raised blister and turned all black underneath. By then I was so sick I again
went to thr ER. Again they chalked it up to a spider bite. The infectious
disease specialist said it was consistant with a Brown Recluse spider bite and
gave me the anti-venom, some antibiotica and sent me again on my way after 3
days in the hosp. OK, now I vowed I would never again hang my clothes on the
line, I thought this was how they may have been getting into my clothes and
All went well intil 2001 when I thought I caught a bug and had
severe diarrhea, severe abdominal pain and couldn't keep anything down.
My stools were nearly all blood, mucus and pus, but I have that share of the
cost Medicaid program for the only insurance I have, and my share is over 700
bucks a month so I have to be real sick so I can go to the ER for treatment,
I cannot afford a 75 dollar office visit as well as the testing and medication,
I don't even make 10 bucks an hour and have a child to raise so off I go to
the ER again.
This time they kept me 5 days, saying I had Pancreatitis.
NPO for a few days on IV fluids, bedrest and off again. I had a doctor with a very
poor bedside manner, and I think he thought I was drinking myself into this
condition, when in fact, after a little research, pancreatitis can be
triggered by any one of 32 different drugs as well as drinking.
I was on like 3 of those each time so there you have it. I tried to explain
this to them but only one young resident seemed sympathetic and agreed that
since there was no blood alcohol level in my lab results, the sulfa drugs must
be the culprits. I cannot take Bactrim or Biaxin anymore, for fear that it will
trigger it again. Pancreatitis is terrible, and painful, and it comes with the stigma that you are an alcoholic.
Anyway, I ended up in the ER again 6 times in 6 months and finally this absolutely useless doctor leaned on the bedrail, looked me right in the eye and told the RN to unhook my IVs and discharge me, saying "she's been through this before, she can go rest at home".
I had a temp of 101.3 and he discharged me, I couldn't believe it. I begged him for a colonoscopy and he said no, it wouldn't necessary, that I should just quit drinking. I told him I don't drink, and he just walked out of the room and signed off on my discharge.
I went to my own doctor who prescribed me Cipro for 30 days and told me to take ibuprofen for the inflammation and to try not to eat or drink much for the next few days to let my bowels rest a little.
I told him what happened in the hospital I was in (he doesn't have privelages there, only at other hospitals but this one is close to my home) and he agreed that 80 percent of patients seen with pancreatitis are alcoholics, so maybe it was a natural assumption but that he should have followed up better when he saw no alcohol in my blood tests.
Well I went on being semi-sick for about 6 more months, always diarrhea and a
lot of times bloody but because of no insurance and can't afford medical
treatment, I self-medicated. Working in a place where there are a lot of people
I asked around for anyone who would have a few extra antibiotics hanging
around their house, maybe they didnt finish a script, and got enough to get
by another 3 months.
One morning I woke with several lumps on my leg again, they were sore and about the size of a marble. This time I countes 24 all in the lower left leg, mostly in my calf and around my ankles. I thought DAMN, now where am I getting all these spider bites? I had moved from the country home and was now in an apartment so spiders were rarely seen, if ever, let alone the wretched Brown Recluse.
I couldn't figure it out until they became so painful I could barely walk, there were over 300 lumps in my legs and my poor little daughter had to help me to the bathroom, and within a
week had spread to both legs and I had 5 more necrotic ulcers, I later found out they are called pyoderma gangrenosum, including one in
my eye. I went to the ER and the doc there said, again, pancreatitis and he didn't know about the lumps, he called in an infectious disease specialist who called in a wound care specialist and all were baffled,
and was about to send me home when I demanded a second opinion. I told them I was so sick and I didn't drink and if they sent me home I would sue their asses off, I was tired of all the run around.
Turned out I had erythema nodosum, cellulitis and sepsis again, lucky thing for them because going septic could kill a person.
Anyway, they put me on prednisone and I followed up with my doc the next business day (the ER visit was on a Saturday) and he said his theory was
that I may have a condition called Inflammatory Bowel Disease, and specifically
Ulcerative Colitis. He prescribed me Asacol and Vioxx and referred me to a GI,
and with no insurance to speak of, of course I never went to the GI. The
Asacol and Vioxx worked enough for me to stay working. I had to wait until
open enrollment in December to get the insurance at work and it was only May.
By July 11 I was so sick I had to take another trip to the ER.
By this time I had figured out how to manipulate the system a little, and in
order to get rid of that other useless doctor I simply didn't turn in his bills
to Medicaid to be paid so HE dropped ME...LOL....how ironic. Anyway, I got
this great team of doctors that within 3 days had all the upper and lower GI
tests done and an emergency colonoscopy (had to wait for the go lightly to work)
Turns out I have Ulcerative Colitis as well as Crohns Disease, so there you
The put me on prednisone for 5 months and now Asacol and I seem to
be doing ok, knock on wood, but there are sometimes things act up and go
Hope you got a laugh out of that one!
Now heres the clincher, it is
December now and I am waiting to enroll in the insurance at work. Then they
changed the rules on me completely, the new rules are if you didn't have
insurance before Dec 5, you can't take the insurance. Crap, I still don't have
insurance and the wonderful program called Share of Cost Medicaid no one takes,
so actually I am only covered if I go to the hospital, and that program ends
in like 6 more months thanks to our governor here in Florida......
We all know how expensive the treatments are so I tried to apply for disability and couldn't,
the Social Security people laughed me right out of their office. Strike one.
So I went back to medicaid and found out that a family of 2 is only allowed to
make 995 a month to qualify for full Medicaid, otherwise its Share of Cost.
So I dropped to part time 3 days a week and STILL made too much money by only a few dollars. I had to have 8 weeks paystubs and one sent me right over the edge when I had the holiday pay on it. Strike 2. Well I only make like 1300 a month and they think I can spend half of that on medical bills before I can get any coverage.
So you know what I been doin is taking a trip to the ER, tell them I have chest pains and my left arm hurts and BAM....I am in and a battery of tests are being done. When they figure out its stress they write me a script for something like Xanax, Klonipin or the like and send me on my way but this opens my medical coverage for at least the rest of that month.
Problem is, by the time the Medicaid opens and I get an ok, there is no time to make an appointment for a GI, so I have to rely on my Family Physician, and I give him a lot of credit, he is very knowledgeable in IBD, thank the powers that be.
Still, I need a GI, and I am stuck for coverage so I will just plug along taking my pills one day at a time until something cracks or I crack.
All this sickness and such with me has caused a lot of issues with my teenage daughter, she is scared to death I will die. I tried to tell her that someday I will, but not right now. Someday we will all die, and don't worry, I won't let this disease get the best of me, not yet.
Now my kid has been on Zoloft for depression and taking anger management counseling for these issues and is acting out in school, getting suspended and the sort for talking back to the teachers.
Heres a giggle, she had ISS (In School Suspension) for 2 days. An overweight teacher was the overseer, and when she asked Holly to do something Holly told her she didn't feel like it so the teacher said then go run laps, you are an obese child anyway and the exercise will do you good so Holly comes back at her and says You ain't got no room to talk so get off your lazy ass and do it yourself.
She was suspended for 5 days.