elisabeth of the desert (history)

[desert]

Information provided is all relavent to understanding the situation, not just for "oh gee".

DX hypothyroidism 1/1997
DX mulitiple sclerosis 10/2000
DX epilepsy (temporal lobe seizures) 11/2000
DX sleep apnea 12/2000

DX c-dif 9/2005
DX cirrhosis of the liver 8/2005 (cause yet to be determined.. i say "proven" due to a med but not pursuing. it's done)
DX peripheral neuropathy 7/2006 (from Flagyl)

because of the various diseases/conditions/whatever that i have it can be extremely difficult to know what is going on when i start to feel ill in some way.

in july 2005 i started to feel ill. could not stand the smell of food and didn't want to eat. too fatigued to want to cook and didn't care. was this MS? probably, i thought.

i was "awarded" SSDI (disability) in 2001 due to MS related impaired executive functioning, short term memory impairment (can be extreme) and general inability to function in a structured environment of a workplace. especially difficult because i did computer support which demands on the fly fast problem solving and dealing with a stressed employee.

in july 2005 when i began to have the sympoms listed above i just assumed it was MS and that was just the way things were.
by august i had begun to have diarrhea (when you know how to spell it you know too much about it! :) but had always been sensitive to various food at differing times. also lactose intolerant so this was not uncommon for me. persistent, becoming more so, was unusual.

i began throwing up. a lot. but there was nothing other than clear liquid and mucous. (no food) i thought it was my allergies (pollen, dust mites, etc.. that type)

by the time this was becoming extreme i was out of it, detached from reality but still apparently was functioning to my husband. like living two lives. the second week in august i knew nothing about until my husband told me a few months ago.

i had really bad diarrhea but apparently kept telling him i didn't need to go to the hospital. he had to clean up after me. it was a crazy situation and of course looking back seems we were stupid.

my husband kept calling my sister about my condition that second week in august (2005) although now director of nursing services at one of our hospitals (we have 5 localling in a university town of 80,000) she has always kept up her RN license. she finally told him i HAD to go to the ER. since my husband couldn't "do" anything with me he had to call 911 to get an ambulance. apparently i kept telling him i didn't need to go, and was apparently pretty scarey to him about this. :)

i remember part of the time when the EMT's were here. i remember being taken to the ambulane and part of the ride. i remember the ambulance backing into the "loading dock i call it because that's what it looked like to me. it *really* worried me that they had taken me to the university hospital instead of "our" hospital. but they hadn't.

i remember part of being in the ER. my sister, good friend or 2 of hers from the time she worked there. don't remember a doc, don't remember going to a room or anything else. the nightmare had begun in force.

later, after being home a few weeks, my husband told me they told him i had less than 24 hours to live when i arrived at the hospital. i was in septic shock.

for the next 3 1/2 to 4 weeks was in a living nightmare. i mean that in a literal sense. some things that went on were woven into my nightmare and there are now a very few things of reality i remember.

not sure of timing...
was in various situations that were all potentially fatal (they were gonna get me!) and all was orchestrated by 'Cristoff' who was the mastermind of Trumans life in the movie "Truman Show". two actresses were the ones who carried out his directives. i was in an office cubicle and they were going to blow up the place. they left with suitcases. but then they came back and that was ok. but then i could hear someone going one by one down the row of cubicles shooting people after talking to them. i decided to lie as much in a prone position as possible so the blood wouldn't all flow down to the lower part of my body.

kept begging my husband to get me out of there.

diarrhea was so bad they had to just put a pad under me and continue to clean up after another movement. but the techs didn't like to do it. (this was true, i got the worst rash, people later gasped when they saw it and had to treat it)

it continued in various situations. one night was in a firehouse that also had had a bed upstairs. an asian market. a foreign birth woman put a bamboo sort of weird thing into my anal cavity for a catheter. it really hurt. (duh!) later i was yelling and people around and swinging a phone receiver round and round by it's cord. a guy grabbed my arms and said - related to what i'd been sayinig, that we *were* alll family.. etc.

later - yet still in my living nightmare - came to and my arms were restrained. this was so horrible it was unimaginable. one of the worst things in my life. i cried and begged and they finally let the restraints out long enough that it wasn't like being "tied down". (this turned out to be true, had to be restrained one night for basically this situation. and i wondered why there was never a phone in my room.. wonder if i hit anyone :(

more things about a liver biopsy, it went on and on but hopefully you have a sense of what it was like to go into septic shock and be so detached from the real world. i don't think people around me realized that i was not "there" because i could talk to them. just the way it was at home with my husband prior to hospitalization.

on 9/11/2005 (to 9/12) overnight i went into seizures, terrible seizures. in my world it was all dark and like colored in crayon although it was moving like video. at one point in this darkness i could see my body convulsing and convulsing.

next thing i knew was people working on me whining about they had done this or this or given up that for *this*???? as if such a pain, not worth it. i thought people who went into the medical field wanted to save lives. apparently i seemed too much trouble.

i was in a place and was begging and pleading to live. Mother Mary was there (mother of Jesus, i've been catholic since '93 and she intercedes, like a prayer partner) i kept begging over and over again. then... there was a very odd thing.. but there were 4 people living.. and there were only 3 that i could see. this meant that i was number 4. it meant that i would live. the others were family. i kept counting over and over and i was number 4!!!!!!

next thing i heard was a man telling the one directly working on me to give up, told how many minutes they had been trying to save me. it was enough. but angel (i'll call him) refused. he said when my eyes were open i was there, but when they closed the lost me.

so i opened my eyes. i opened them so wide its amazing they stayed in the socket. not sure i ever blinked. there were interesting things here but details are getting long.

one thing is that a woman patted my hand and told me to keep my eyes open. i thought then that someone was going to help me, to comfort me, to guide me through. but she just did that and was gone (i could not see anyone and was still extremely detached)

then there were more interesting details.. after that the next thing i knew was waking up (9/12/2005) like a new human being, one who had been washed clean and full of joy.

the people who came around were in shock. after dying during the night this is not normal. (but there were people all around the world praying for me thanks to a religious order of lay person i am associated with)

the sun was bright and i was full of joy. clean. new.

while before i could not move to find a nurse call/tv unit next to my head, i began to get out of bed - only by being basically carried. sat in a chair it was very hard. finally after two rehab wonderful women worked with me, i got out of the room using a walker and being held onto with a belt they wrap around the waist. it was a miracle.

after another week and a half, i think, i was sent to the neuro floor out of MICU. i might get to go home in just a couple days. still had to call and have help onto a (gee i cannot think of the word.. the portable stools..) this was a pain. i was still on IV feeding and attached to another unit or two. cables everywhere. what a pain!

the first night i was there the tech checked my stool and it was a lot of blood. this happened a couple times during the night and by early morning was in radiology for a hour as they scanned my intestines.. can't remember the name of this procedure.

in my room a GI doc came and gave me the 3 scenarios of what it might be and what might happen. he was the last resort and i told him i didn't want to see him again . meaning i didn't want his surgical procedure. i think removal of the colon (memory is so bad, am trying to give good information)

it turned out it was a small perforation that would heal itself that day which it did. then i had a colonoscopy but couldn't go under due to my liver, etc. did *not* like that but got to watch the viewing screen and that was pretty cool!

i also was sent back to MICU and put under isolation (which i had been in before) so far it was like a closet in a corner. had to go through double doors to get back there.

the first day they called in a nurse who had previously been in a very technical part of medicine but left for special reasons. that was the day before the colonoscopy. when i have had my 3 i had to take the liquids (they taste good) until there was absolutely nothing in my stools. that takes a while, even when on IV feeding. (weird, huh)

that night my "angel" was my nurse and we got to talk about the night i kept dying. this was such a good thing i think this is why there was the bleeding complication. i just cannot stress enough what that night meant to me to talk so much to my angel. what an amazing guy. very interesting life.. nursing followed some amazing things. ( a very high position in a military field, too)

don't remember much for the rest of the time .think it was because it was all the same and one day ran into another. my neuro would come in and ask me the day/date. i'd look for the calendar. then told him what do i care, it doesn't make any difference! i don't know at home! (true, but now have a watch with 3 alarms for meds and it shows day/date:)

i finally got discharged and j ust dont remember the time preceding.

2 months before i became ill we bought a gigantic 4 wheel drive pickup. it is huge. crew cab, about everything you can get other than a moon roof. but it was such a good deal i dont care if it had been wrecked.

we got it when we bought an airstream trailer from eBay (not kidding :) :) we were going to RV full time. love to camp.. grew up in washington state and we camped all the time. i mean *all* the time.

that was all gone. now here i was out of the hospital for the first time in 6 weeks, could just barely walk at all, and there is this 3 ft (i think) approach to the seat. my husband had to shove me up by my behind, and continued to do so for at least a year. (that was 9/2005)

we can't find records that i had any antibiotics after leaving the hospital, the c-dif (didnt even mention this before did it, all about c-dif) seemed gone.

i continued to have no appetite, didn't want to eat. after being on IV feeding for 5 weeks eating was too hard. nothinig was appealing. i lost a lot of weight in the hospital , then lost more. .. i was happy to wear size 6 jeans but my husband was horrified. he couldn't stand it. i did look like the end stages of severe eating disorder.

finally started eating more then more and more. i stayed up late and ate a lot then. found wonderful nutritional information at the DOLE (as in fruit) site, the special one for education. their "SuperFoods" tell which is best for what. what each organ gets the most benefit out of. it was great.

in march of 2006 i was having bad problems with remaining upright, vision problems, 2 others i cant remember. went to the hospital and it took my "dream team" as i call them several days to determine which area was the problem. they were finally convinced it was the MS so began a 3 day course of Solumedral drip. by the second day i was great. got out after 6 days. still had to walk carefully and not get in a position of imbalance so i might fall.


a week or so later c-dif was back. had to take flagyl. went off. c-dif back in a few days. we are trying to get the records together so i might give some history with continuity regarding when flagyl and vancomycin were used. at one point i had both. always when going off the c-dif was back

in may 2006 went to the hospital much of my own asking because of c-dif. another colonoscopy but everything ok this time. put on vancomycin and went home after 5 days.

finally was only on vancomycin. about jne or july was having pain in hands and feet. called my neuro. it was no doubt peripheral neuropathy and not a lot to do unless it got really bad. it got really bad. my hands quite literally felt like they had been immersed in boiling water for a time. it felt like they were all burned and skin was going to come off. it was so bad i actually cried at times and nothing had made me do this yet. my feet were bad but i didn't have to *do* things with them like my hands. i got finely woven cotton gloves but it still hurt so bady. the worst thing was it was so hard to type! i've been online for 19 years (starting iwth BITnet) and to not be able to write to old friends (so many whom i've met from all over the country) was terrible :)

finally it st arted to get better (than the extreme) so my neuro didnn't give me pain meds. i dont want them anyway. may need them later when MS.. if MS.. gets extreme. better to learn to live with pain now, which i've been doing.

november 7 ,2006 got pain meds. neuro said peripheral neuropathy from flagyl.

about november 12, 2006, i had the same symptoms as in march. extreme fatigue, almost total inability to be mobile and it didnt seem like balance or strength.. it just *was*. my husband had to call my sister to help him walk to the pickup to go to the ER.

was diagnosed with high levels of ammonia which did what seemed the same things as the MS exacerabation in march. (think i wrote this already but can't see it, oh well.. please forgive me)

in the hospital for 10 days. neuro did test to verify the peripheral neuropathy with an opinion that it was from the flagyl.

the c-dif came back while i was there, thats why i was in 10 days. finally it was managed somewhat and begged to go home on the 22nd. it was our 20th anniversary and the next day was thanksgiving, 2006. i got to go home that afternoon. we had pizza (YAY!) and watched "The World's Fastest Indian".

the next day my son and his girlfriend and 2 others fed us thanksgiving dinner... his first ever as host. it was terrific and i felt good. friday we went to walmart which was a big deal to get out and i walked as much as i could just to be out of bed and get exercise.

by sunday i was feeling the same way as when i went to the hospital and had some blood in my stools. had to go back to ER and was admitted. i was there a day, then on tuesday prepped for my 3rd colonoscopy

there were polyps that were removed, very tiny. otherwise ok.

came home and have been on vancomycin since. every time i try to stop c-dif is back.

have now been working a lot on probiotics and moreso lately. reading so much about what others have done has been excellent help.

the other thing is the specific hand washing. a little but critical thing. i've gone in restroom at walmart and watched women leave without washing their hands. the first section of the store there is produce. all unwrapped and free to feel. YEEGADS!!!!!!!!!!!!!!!!!!!

my taper of vanco. is supposed to end the second week in april. from from 3/28 to approx 4/5 we will be at kids in texas. don't want to get c-dif while there!

since i nearly died permanently 9/11/2005 and haven't seen my brothers i got mega-cheap airline fares to visit them. we are extremely close even though such long periods between visits. we can't afford for me to go but i am going. one in georgia and one in oakland, california (berkeley)

in oakland 4/15 - 4-25-2007. in georgia 5/10 - 5/15/2007

i do *not* want to go off vancomycin :( because who knows what will happen and i do not want to miss those visits.

my husband just found the scripts info for vancomycin and flagyl in 2006. will put in a following note later. need to send this because it has been a couple hours and if i lose it will have a seizure! sorry for the lack of continuity on that but will put in a simple historical list so may be easier anyway, as far as getting the picture.

so thats my story so far. so very happy that my spiritual journey that i know "suffering" continues to make me a better and better person - and boy do i have a long way to go so will not be surprised at however it all continues.

compared to most i have suffered virtually nothing. i think of those with cancer and poverty who don't even have enough to eat, who don't have a roof, who can't go outside due to war.... always this perspective comes to me and i feel so blessed to be just where i am because it is so much better than the very major part of the world.

this doesn't mean that what we suffer doesn't matter. whether one has more or less, it all "counts". it is all a valid reason to feel one is truly suffering. it is simply that the perspective that comes to my mind changes everything in my heart and thinking.

so i'm a "happy camper" who just has different days. i don't want to go to the hospital but they really do have good food. they clean everything for me. answer to whatever. it is frankly humbling. everythingn anyone does i thank them because it is a service for me. even though they are paid, even though their heart may not be in it, they are serving me and it is something that simply humbles me. its one more thing that makes me a better person to ponder on this.

so, thats it for now.. may have written that paragraphs prior. let me say one more time my short term memory can be really bad and i can repeat myself or leave out things. if you get the gist of it, great.

elisabeth of the desert

( i grew up in SE WA state in the desert and love the desert like i love the mountains. spiritually it refers to a time of dryness, emptiness... like one can be when dealing with health (non-health!:) so my wandering in this "desert" is at the same time bleak and beautiful.)