LONG update from Tracey

[Guest guest]

Hi everyone,

It's been a long time since I last posted anything here or read any

of the " chatting " going on but I spent a lot of time in the hospital

this year and then our computer got a very nasty " bug " and

we had to " save up " to afford the repairs. So that's my excuse and

I'm sticking with it!!!

I'm sure there are many new people here who I haven't " met " but I

hope that all my " old " friends are still all here.(in case the " old

folks " don't remember me - I'm Tracey - the one with the " surgeon

from hell " who did an " experimental surgery on me " )

Now - for those of you who I haven't met you might want to skip the

rest of this long post - but I wanted to update my old friends and,

as they will quickly remember (from reading this post) I tend to

ramble quite a bit! So for any of you have a few spare hours to read

my mini novel, I suggest getting something to drink and settle in for

my long and meandering tale.

Lets start at the beginning of the year (I might repeat some " stuff "

as I don't know when we last " connected " and/or you got any info from

.)

- In January I was admitted to hospital - all my blood levels

we " bottomed out " . My weight continued to drop - at one point under

90 pounds. We believed that every avenue had been explored and I was

admitted for " palliative care " . Odds were that I might live a few

months more if I remained hospitalized, which we opted for. Then

sometime in February (Note : I only have vague memories of all of

this because of my health and the medications) - out of the blue the

surgeon who turned down 3 requests from my doctor for a consult -

sent one of his Interns to my room where he promptly said " You're in

luck Mrs. Dr. Davies has decided to do surgery - tomorrow " . He

was shocked when I told him " No " but I wanted to discuss it with

and I wasn't prepared to go into surgery without knowing what they

thought they could do, some kind of estimates on my " odds " of (a)

coming out of surgery alive ( at least a " guess " at what they might

be able to accomplish - I didn't want surgery if the " best case

scenario " was me coming out of surgery and things were only slightly

better - if they thought they could likely only prolong my life a few

months or even one year... I was really tired of being so sick, I was

missing out on most of life - I wasn't interested in " quantity " of

life if it didn't improve my " quality of life " - I hated watching how

much stress everyone was under, what and Mariya (and, of course

all my friends and family) were going through on, what I can only

describe as this " death watch " . I had one very " ill-advised " surgery

years ago that got me into all this - I didn't want to make the same

mistake. After talking it all over with (and the surgeon who

seemed rather indignant about the concept that I wanted to talk,

directly, to HIM - not his Intern, that I had questions - that I

wanted to know why he said " yes " to surgery now - when he wouldn't

even see me several months ago.) My experience has been that most

surgeons have some kind of " God Complex " - they expect patients to

bow down to them and be grateful for the opportunity to be in the

presence of such gifted doctors) we decided to go for the surgery.

The reality was that there was little hope that I could survive the

surgery and, if I did, there was little hope my condition would

improve - so I said yes as I figured there was a slight chance I

would come out ahead - but I knew my loved ones wanted me to take

that chance and I thought - if nothing else it would end all this

faster - letting my family and friends begin to heal, to move on.

So - obviously I survived the surgery!!! The surgeon had done surgery

on many of Dr. Salmons patients and he said my surgery was

on " variation " that he hadn't seen before - it's a little hard to

describe without pictures or hand gestures - but he said Dr. Salmon

had detached my intestine, stapled my stomach then rolled the

intestine up - like you would role up a garden hose, and he had

stitched each " coil " to the next one, effectively leaving only a very

small hole in my intestine through wich food could pass and then

reattached my intestine at the top of my stomach. The good side

was, of course - that I still had that intestine - before surgery

they thought Dr. Salmon had removed most of the intestine and there

wouldn't be very much they could do. After surgery they put in a

shunt and gave me TPN (that sounds wrong - but I'm sure you know you

know what I'm talking about) I stayed in the hospital until mid

March - but I felt better than I had in MANY years (although I was

quite afraid of going off the TPN - I was not confident that I would

really be able to absorb food/nutrients - through my stomach and

intestine - but, after some really hard attempts to eat I started

getting better at it. I had to also spend time in physical therapy as

I had lost most of my muscle tone - I couldn't even walk small

distances without a walker and needed help to get out of bed - but I

did slowly improve (I'm sure all the patients and nurses had thought

my family and friends had " gone off the deep end " when they were

all hooping and cheering when I could walk a few feet on my own!)

Getting to go home was so wonderful - I had expected that I wouldn't

ever get to go home - so I (and , and Mariya and......) Were

overwhelmed with what truly felt like a miracle! unfortunately this

joy was short lived - after about 7 hours at home I was back at the

hospital emergency room - feeling VERY sick. After a few hours of

waiting in emergency to see a doctor, I was quickly moved to a

private room - I had a infection (hmmmm... " infection " doesn't sound

quite right - but I'm not sure how else to say it) This infection was

because of the mega amounts of anti-biotics I had been on after

surgery. The " private room " was because I was highly infectious -

everyone who came in had to gown and glove themselves and I was not

allowed out. While I have to admit that, as a patient, I think I'm

pretty good. I understand the hard work put in by all the staff

(doctors, nurses housekeeping etc.) And I try not to add to their

load - to do what I can for myself and take time to be pleasant

towards them all. I only had one " Nurse Ratchet " in my many months in

the hospital and I'm sure the problem lay with her - not me (she was

just as cranky and rude with other patients). But this time, however,

I was anything but a good patient. I wasn't rude or demanding - it's

just that I was so angry/frustrated about being back in the hospital

again that I just wanted to be left alone - I insisted that NO ONE

other than visit - I wasn't " fit " for company - I couldn't " put

on a happy smile " (and I would have excluded him but I knew he

wouldn't have agreed) I was in there for about 3 or 4 weeks and I was

pretty mad/sad/frustrated/depressed/etc the whole time - I just

wanted to go home (of course I wouldn't do that and risk infecting

anyone else - but this was the " final straw " and I wallowed in self

pity most of the time.) Finally I was allowed to go home again and I

think and I both " held our breath " for a long while - trying to

keep from getting excited about me being home - worried about being

lulled into feeling safe/positive only to have the bottom drop out

from under us once again. But our luck seemed to have changed - at

least for a while.

I think that I told you about having Protein S Deficiency and needing

to be on blood thinners - during my stay in hospital my blood levels

(INR/PT) were never stable - I had blood work done at least once a

day. When I went home this problem continued so I had to go to the

lab - sometimes every day and sometimes every other day. This has

never changed - to this day I still get blood work done a minimum of

3X a week. I know that there could be worse things - but it's just a

frustrating thing to have to continually go to the lab - on the

positive side, however, all the lab tech's are really nice and we

have a great relationship. (ok - maybe it a little " weird " - but it

makes the " visits " more tolerable))

Throughout all this I was feeling much better - my nutrition levels

were actually somewhere close to normal, I still can't eat much at

one time - but I keep a lot more of it down and now I actually seem

to " absorb " nutrients and such out of it. I was slowly gaining

weight, I didn't have so much pain so I was able to stop (or close to

it) on many of my medications and was pleasantly surprised by how

really great life is when not seen through a haze of medication!!

Then about 6 months ago, and I were in the living room rolling

coins we save in our " wish jar " , throwing about ideas of what we want

to use that " mad money " on when suddenly (it was sudden to me only) I

was laying on the floor with saying " Tracey do you know where

you are? Do you know who I am? You've had a seizure, but you are ok

now " (luckily both and I have worked with kids who have seizures

so he knew what to do (and what not to do), however, I had never had

a seizure in my life - so this really came " out of left field " in

terms of " why " this happened. phoned my doctor and back to

emergency we were, once again, headed! They did some tests (MRI, Cat

scan etc) and everything came back fine - so I was able to go home,

but not allowed to be alone in case of another seizure - so I

had " round the clock " company, while waiting for an appointment with

a specialist in a couple of weeks. During that time I had another

seizure - pretty much like the first one (I guess - I remember

nothing of the seizures) I finally saw the specialist - he did some

tests and put me on a medication that he hoped would stop them. About

two weeks later I was at home, cooking supper, was outside doing

something and " bam " another seizure - but not like the ones before -

this time I was in the kitchen cooking and then I remember

talking to me telling me I'd had a seizure - the difference was that

we knew I was in the kitchen because I had dropped a bottle of soya

sauce on the floor - I don't remember dropping it or anything - but

when came in I was on the couch, bloodied from a gash in my

head - obviously I had hit something - but I had also moved from the

kitchen to the living room but completely unaware of going there.. I

went back to the specialist and he said that it was a seizure - just

a different kind than the two before. He increased the medication

and " Thankfully " I have not had one since. My big question was " Why

did I have the seizures at all? " Basically, they don't know - there

are several possibilities - but not one that they can pinpoint as the

cause. I'm not allowed to drive anymore, which I hate - I just hate

being so dependant on others - I can't go anywhere without spending

money on a cab or without having to interrupt someone else's day for

a ride (of course no one minds and with 's large family there are

many people willing and able to help out) but I find it really hard -

I'm back home, feeling better than I have in many years and it

seems " petty " to complain about not driving - but it is frustrating.

As I said to , there are numerous people who have volunteered to

drive me anytime I need a ride - but it's one thing to ask someone to

give me a ride to a doctors appointment - but another to call someone

and have them drive over and pick me up because I want to go out and

get 1 can of tomato sauce for dinner.

And, as if that weren't " fun enough " I have one more thing " thrown

into the ring " to keep my life interesting. That " thing " is teeth! I

can't recall if I ever told you but I have major problems (fear) of

dentists. My dentist (and all his staff) are really great - they go

out of their way to make the visits easier and never make me feel

silly or childish etc. If I didn't have I wouldn't ever have

seen a dentist throughout my adult life for anything but emergency

work when the pain would over come the fear. But makes it all

possible - he books my appointments but never tells me " when " . He

always books me for the first appointment of the day, then he wakes

me up at the last minute, hands me some Valium (I don't think I

spell that right) and tells me I have an appointment in 20 minutes -

long enough for the Valium to " kick in " but short enough not to work

myself into a " tizzy " . Late last year I made the decision to only see

the dentist for " emergency " types of stuff - I was, at that time,

making this decision because we believed I only had a few months

left - it seemed useless to put myself through all that anxiety. I

always lost a whole day whenever I had a dental appointment - because

of the medications and gas they gave me and then the pain when the

freezing wore off - I didn't want to waste the days I had left to

dental work. , my doctor and my dentist all agreed that this made

the most sense. However - my teeth were (and still are) in really bad

shape - many " teeth " are actually a little bit of tooth and a whole

lot of filing. The fillings fall out easily (not much tooth for them

to hold on to) - my medical stuff was the biggest cause of this -

many of my medications have a side effect of " dry mouth " which is bad

for teeth and I constantly had stomach acid in my mouth (from

vomiting and acid reflux) my osteoporosis isn't help much either. Now

that it appeared I was going to be around for longer than we had

anticipated - we were " stuck " with what to do with my teeth. I had

lost about 5 fillings and/or teeth while in the hospital and

constantly losing more once home. We started working on them but the

seemed to break faster than my dentist could fix them and they were

significantly affecting my eating - not a good thing in my case. We

finally decided that the only choice was to get them all out and get

false teeth - an event we are waiting to have happen (Dec. 19 - which

seems forever away!!) The waiting is really hard - I've been on

several rounds of anit-biotics because I keep having abscess's, my

teeth and gums are really painful and I now have some " empty " slots

where food can get stuck and cause a lot of pain. Luckily my dentist -

being the great guy he is - is doing " patch work " dental stuff for

no charge while I wait to get them removed (I've had to see him quite

often for him to " file down " teeth that break and leave sharp edges

that scrap/cut my tongue, he has put in many temporary fillings in

and will continue to do whatever I need while I wait) Because of all

my medical stuff I have to have a lot of " extra's " to get my teeth

out - I have to stop my Coumadin (blood thinner) for a few days

before hand, I have to be completely sedated and have the work done

in the hospital - not at the dental surgeons " on site facility " . Our

insurance company will pay 40% of the cost - but even with that the

cost is incredible!!!!! The dentures cost $1000.00 a plate and the

surgery is about $4000.00!!!!!! We don't have the 60% - but will have

to take out a loan or something since not getting it done is just not

an option. For several months I have lived mostly on soup, jello,

pudding and popscicles (most people think it strange to eat

popsicles - but they " numb " the pain and chewing them, I think, helps

me feel like I'm " eating " . The bad news is that this isn't a very

nutritious diet and my blood levels are dropping again - the good

news is that if you pretty much live on Popsicles - you will gain

weight! And boy do I know that! I was about 105 pounds when I left

the hospital - now brace yourself - I am now 150 pounds!!!! God - I

just live my life in one extreme to the other!!! I'm certain (as is

my doctor) that this will get better once my teeth are done and I can

eat more nutritional food - and I can increase my activity ( a lot of

pain killers for my teeth keep me fairly immobile right now) and, as

she pointed out, my body has basically been starving for 15 years -

making it become extremely efficient at storing what ever

nutrients/calories it did absorb and my metabolism has slowed to

almost nothing to keep from burning off anything I took in. It will

take quite a while to " re-train " my metabolism and that can't really

start until my teeth are done.

Emotionally - life is feeling like a really bad roller coaster - I'm

really struggling to not " panic " about the weight gain - but after

all these years and all that I've gone through it scares me that I

could end up the same place I started his journey - obese again and

then needing the knee surgery that had been the reason for the WLS in

the first place. I have a lot of pain in my ankles - sometimes enough

to make walking difficult - I think it is because the osteoporosis

has affected the bones and the weight gain has been rapid and my

bones have difficulty carrying this extra weight. None of my clothes

fit and I feel like hell - body image wise. Everyone is shocked and

happy for me when they see me - for the first time in years that I

have looked even a little healthy. People notice the weight but all

say I look better - but, frankly, I feel all those old feelings

around being overweight and, well - it's just plain hard and

confusing and frustrating etc. I find that I am isolating myself -

not wanting people to see me like this - heck I haven't even

undressed in front of - I know he loves me - he fell in love

with me and married me at 280 pounds - but still I don't want him to

see me like this!!!!

I'm no where ready to return to the work force - which means our

budget is very tight - I worry that we will have to sell the house to

try and climb our way out of debt we accrued these past few years -

and with the dentures coming up - I have no clue as to what the

future looks like.

Next, our daughter Mariya has moved in with her boyfriend - they live

in a town about 4 hours away. I know that she is doing exactly what

she should be doing at this point in her life (she just turned 20

last week - I have NO IDEA how that happened - 20 years old??!! I'm

sure someone is doing that math wrong - I was younger when I had her

that she is now!!!) She is taking on responsibilities, work, having

her independence - but 4 hours away is terrifying to me - last year

she had to get her appendix out. We got a call that she was at the

hospital about 40 minutes away - well that 40 minute drive was

excruciating! I couldn't relax or calm down until we got there and I

could see her, touch her and be there for her. All I can think of

what it would be like if something happens now - a 4 hour drive in an

emergency situation is overwhelming thought for me!!

The other day one of my sister-in-laws asked me " why I wasn't happier

than I appear " - well I am happy in many ways - but in other ways - I

feel completely " lost " - I feel like I have lost my entire sense of

identity. I was, for the last 20 years a very " hands on mom " - I know

that Mariya no longer needs that from me - but it's difficult

to " change gears " - I'm still her mom and I am " empty nesting " a

whole lot - much more than I ever thought I would. I miss her so much

I often find myself in tears - last week was her birthday - it was

the first time I wasn't a part of that day - she is coming down for

the weekend and we will celebrate her birthday here - but it's just

not the same.

On top of my " empty nesting " comes another, somewhat similar event.

When I was 16 years old I had a baby - a boy - who I gave up for

adoption at birth (I knew that I was far from ready to be a parent -

that he deserved a better chance for a good life) He has never been

a " secret " Mariya knows about him as does and the rest of our

families. Mariya has always wanted to find him - I told her that once

she was old enough (and he was old enough) I would help her search

for him if she wanted that (I always felt that I had, as his parent,

made one life altering decision for him - one that gave up my rights

to interfere with his life in any way, I wouldn't search for him -

for myself - but I did everything I could to make it easy for him to

find me if he wanted to - we have a " adoptive birth registry here "

adopted children and biological parents can be " registered " and if

it happens that both are looking for each other the " match " is

immediate. Once I was diagnosed with the Protein S Deficiency the

specialist told me to have all " blood " related family members to talk

to their own doctors about being tested - the condition is thought to

be hereditary - the danger lies in not knowing you have it and

forming a blood clot - if you know you have it medication will ensure

you are " safe " . So, because of this, I decided I had to search for my

son - and I found him sometime in June. He came over to the house

and...well...I simply can't express how this made me feel - it was

wonderful, exciting, overwhelming etc........ all at once. He (Jeff)

and Mariya look a lot alike! He said he has great parents and he had

a really good life. It was wonderful to get to meet him (although I

have never been as anxious/scared/excited as I was while waiting for

him to arrive!!) Since then we have talked on the phone a few times

and he and Mariya occasionally talk and they went out for supper

once. I'm not sure if there will ever be any kind of " relationship "

with him - I desperately hope there is - but I will respect his

feelings about it and let him " lead the way " .

I'm really miss working now that I'm feeling better - even though I'm

not well enough to work, I also have had to come to terms with the

fact that I can never return to the field I was in - a career that I

loved and miss constantly. I was a Child and Youth Care Worker - I

love working with the kids but part of the job is to be able to

restrain a kid if they get out of control so- physically I can't do

that job. Because I never expected to return to the work force at

all I did not re-new my certification - an extremely high honor and

recognition amongst many of my colleagues - but paying the yearly

fee seemed a waist of money. - so I'm not sure what I might do with

my future.

So I'm not a " hands on " mom - I'm not a Child and Youth care

counselor - and - as strange as it sounds - I am no longer a " dying

person " - now don't get me wrong - I didn't want to die - but I

had " come to terms with it " - I tried to live each day positively and

I was also completely terrified of forming any real " new "

relationships with others since I didn't want to have even more

people hurt by me dying. So the one piece of identity I had left

was " being someone who would die with dignity " I was still a wife, a

aunt, a sister, a sister in law, a daughter, a mother etc - but all

those relationships were very different because they then included

and were affected with my identity of dyeing. Then " poof "

everything changed - it appears I'm going to live and that I might

do that for some time to come (I truly am grateful for that) but I

feel completely lost - I have no real " place " in the world yet - I

haven't yet figured out who I am now that I'm living - especially

since I am so dependant on others for so many things. I never made

any plans to live - so I am just floundering around trying to " figure

out " who and what I am in this " new " life I've been given. I am

thrilled to be alive - I am thrilled to feel so much better than I

have in many years - I am thrilled to spend time with those I love

and not be so medicated that I can't really be a " participant " in my

own life - but I'm also afraid and lost about what Im going to do and

who I now am. It will just take some time (or so I keep telling

myself) and I just need to be grateful for each day I'm here and try

to make the most of it. I need to be grateful for what I can do and

not ungrateful for the limitations that are still on me - I need to

be grateful for just having the chance to make future plans and less

worried about what they might be.... it's really a lot harder to try

to get back any sense of " normal " life than it was to accept the

identity of dying (dying took no effort at all - my body and nature

took care of most of it - I really didn't need to put in any effort.)

So - I think that brings you up to date (I warned you that it would

be long and rambling!)

I'll try to read some of the messages I've missed (I'm sure the group

continued to write even though I wasn't able to participate - I'm

proud of you all for being able to struggle on without my great

wisdom and insight~S~) I don't spend to much time on the computer any

more - I worry I will somehow " break " or " infected " again (although

we didn't " break it " in the first place - but there is no use in

tempting the computer " Powers that Be " by suggesting they did

something to it) but I do still find it tiring to sit for too long,

and concentrate for any length of time. So if there are " gaps "

between email - it's nothing personal - just me moving slow as

molasses!

Well I'll let you go to wade through this novel

Take Care

Tracey