Re: A reply from Tina to Jeff

[Guest guest]

Hi Jeff, I have been appreciating your messages since I first joined. I am deeply touched by the fact that you spend so much time supporting the rest of us when you have been in remission for five years. Your empathy is amazingly fresh and sincere. I wonder if I could bring myself to do what you are doing. Bless you kind sir. If I was in remission, I think the last thing I might want is to be reading about it and being reminded five years down the road. I might want the whole experience to remain out of mind and out of sight as much as all the scars would allow. I was a bit confused reading about you missing ground rounds for the first time in ages. Why do you go to ground rounds when you are in remission? I was aware of the pg dx process that you describe below. I just wonder when they finally leave me alone with the poking and cutting and lab work. when do they exhaust the hunt for underlying cause and

accept the idio aspect? I don't know how much more I can take when we all knew from the get go that the odds are in favor of idio. I am physically and financially exhausted from all these years of appointments and tests. And it is all causing such social isolation. When I need my friends the most is when I have no time or energy for them after my endless appointment schedule. This can really take its toll on friendships. I have not faced years of such a single pointed life since the initial years of parenting. My social skills atrophied very badly when I was a new mother, and that had some universal appeal for conversation. Now with pg, months go by and I feel like a complete dud chatting about how my day went, what's new, etc. Unemployment doesn't begin to cover the facets of isolation this is causing. I hope you hear back from your recent job application soon, and favorably. Sincerely, Tina pg ;04Jeff wrote: tina,by the other message you mean my agreeing with rebecca that the biopsy for pg is a dx of exclusion? simply, all that means is that they do 2 things during this biopsy. they examine the cell structure under the microscope and they culture meaning they attempt to see if the tissue will support and grow such things as yeast and other bugs that would cause infection. if none of these things occur and the cell structure does not yield anything agreeing

with something like cancer and other things, the determination from the biopsy is that it is something else...and exception...unknown. does not say it is pg. to make the dx of exclusion, that test and others rules everything out. then, of course, you have the patient history and the physical evidence characteristic of pg. maybe you are familar with ths already. this just is the way it is. we don't know much about pg. the fact whether or not it is idio makes little difference to the methods of dx. the sad fact remains that docs, no matter what discipline, are not trained in pg. derms probably more trained then others, but not by much.just like with en, we want to get to the root of our pg. the underlying cause. and like en, there may or may not be one. this is one form of the dx. so little is know about pg and the treatments are, like one ent doc told me as with most autoimmune diseases, "many times worse

than the disease itself".i went thru the same experences as yourself. i found only one answer, and that was going to a teaching/research medical center. if i had not done that, i think i would still be round robining every doctor this side of the mississippi.coping. that is tough. i would not be qualified to say much here had i not experienced the pain and anguish that i had. i had to rely on others, as much as one does not care to do that. it is not easy. this experience was the toughest thing i have ever had to deal with. and it was not easy on the people trying to help me either. let's face it, the world and ourselves are not prepped for this. it is not scripped anywhere. now, i too am unemployed. i have not been out of work for many years. it is one of the worst feelings of helplessness.you raise a lot of good questions. i can't answer them all. but i am very sorry you have to deal with this. i am hear

to listen and try to help if i can. we will all pitch in with suggestions if we have them.be well,jeff,cd,pg>> Jeff,> This clarifies nicely about your issue with infectious disease docs. thank you. Your other message was way to criptic for me. We're back to the dx by exclusion thing again aren't we. > > The main thing that I have noticed about every doc, regardless of speciality, is that they see a patient through the lense of what they are trained and prepared to treat. So when one of us with a rare, not easily treated issue shows up, they start by looking for everything they know how to treat, and they try their treatments because something must be better than nothing when the symptoms are so

horrific and the patient is frantic. Then they pass us on to the next specialist, who does the same thing, Then that one tries all kinds of other tests and treatments and then passes us on............. ............ round and round (for almost four years in my case). > I knew many years ago that I might have pg, but i thought I needed a medical doc to confirm this in order for it to be true, and in order to get an rx for treatment. So, I knew going in that about 60% of the cases are idiopathic. So, I figured that any doc who was considering pg would be reading the same bottom line info and realize the 60% of the time it is idio. So I never could have imagined that so much time and $ could be spent on slicing and dicing me (especially when I don't have insurance) when the odds were in favor of not finding anything. Usually, in the past, not having insurance was sort of a good thing because it triggered docs

to think logically and check into their intuition; and to question their rote learning about all the wild cards to cover in order not to get sued. > > I read that the Journal of American Medicine had an article that the third highest cause of death in the US, after heart disease and cancer, was medical treatment. And I'm sure that would not be factoring the numbers related to depression and stress that medical treatment, or buck passing, causes. OMG!!! When I read some of the drugs used to experiment on some of you!!!> > I have been getting very depressed as the medical bills keep showing up in my mailbox from December. While waiting for my big Christmas check from my parents, I had such a long list of things I have been waiting for when that money came (since I have been unable to work, for the first time, because of the pg). I haven't been to have my eyes checked in two years. I was hoping to get

an inhalor for my asthma because mine expired in 2004 (and I especially wanted to get one since I read my Singular might be a trigger, so I stopped taking it ). I did get a futon mattress before all the bills came (I've been sleeping on the floor for many years, but with my pg so bad, I don't have enough mobility to get up and down from the floor anymore). I was hoping to get a futon cover for it. And I had my heart set on getting a carpet for my room. I have found Pilates and some yoga to be extremely wonderful since I can't walk much (or sometimes at all). A carpet would make it so much more> comfortable, and protect the nice floor in my rented room when I move the furniture around to make room for exercising.> > Now the slicing and dicing bills from Dec are pouring in. Do I still get the carpet and the inhaler, or do I pay for the slicing and dicing? This issue of deciding between expenditures for

enjoying life so I can want to continue perservering, or expenditures for the seemingly never ending search for the underlying cause of a disorder which is idiopathic 60% of the time and which seems to offer no safe treatment, seems to wear me down like Chinese water torture. (When I say expenditures, please know that I am talking time and physical stamina, not just money.) I get so desperate with the pain, disfiguring and the unemployment that I get disoriented from the common sense which demands that I spend the limited resources on enjoying life. I feel as though I have been stuck in a revolving door of never ending appointments which offer no relief (other than the companionship and attention) for nearly four years. But the desperation makes me afraid to exit the merri-go-round. I> know that the symptoms always go into remission anyway, eventually. Even if some expensive treatment did bring about results,

who could say if it was that treatment, or just spontaneous remission. And since there are hundreds of possible underlying causes or triggers, when my symptoms return in months or years, who the hell could figure out why!!????????!!!!!!!!!!! Call it mysterious, or call it garbage ----- it sucks either way.> > Sorry, I'm particularly depressed tonight. My daughter is going back to college after a three week break. I have been waiting and waiting for the weeks when she would be around. I had all sorts of things I needed help with because of not being able to walk much. And I had special fun things I was looking forward to very much. When I am laying here alone month after month trying frantically to get my bed rest (wondering how to stand up long enough to cook, or how to shop for food and bandaging supplies, how to get to appointments, and how to get to fun and companionship), I can really wrap

my mind around expectations and promises. When the promises and expectations are broken after those months of patience, I crash pretty hard. My daughter hardly saw me at all the whole time she was home. I feel like she avoided me like the plague because I am so needy, and I can't blame her (or anyone).> > But I'm clueless about who would be appropriate to ask for help. Virtually all my friends have jobs and/or families. And I feel like the more needy I get and the more I reach out to ask, the more people will want to avoid me like the plague. And then the more I will be here alone wondering how to handle all this inability to take care of myself, both physically and financially. And then the more I grab onto my expectations and promises (mental carrots on a stick to get through another day) in order not to go under with depression. And then the more I set myself up to crash and burn emotionally, putting

people off with my occasional, inevitable emotional volcanoes (when I feel completely hopeless and needy and my cheery, uplifting personality turns to ashes until the phoenix rises again). Under the dark side, is the cynicism of wondering whether all the years borrowing energy in order to give others the unusual amount of help they sometimes required is what helped to blow> out my immune system. I always believed that what goes around comes around. So I was certain that if I borrowed energy to help others, then I would accrue cosmic, compounded energy to draw on when I needed help. It therefore floors me when close friends are too busy with manicures or lip waxing when I need a ride to the hospital.> > I must admit that I spend lots of time in revolving doors -- medical, emotional, financial.........> > How do the rest of you cope?????? Let's spend some of this self help yahooing

sharing tips on coping. There must be more we can do with each other in this cyberspace besides rehashing medical disappointments and chasing silver bullets. How are you coping with all this need for bed rest?????? How do you feed yourselves when the pain is so bad that you are waiting til your bladder is about to burst before you drag yourself down the hall to the bathroom and endure the torture of sitting long enough to pee? Is there anyone else out there who needs some EN/PG peer yahooing help addressing some totally basic issues like these? What self talking gets you through the darkest times? Music, audio books, movies? What uplifts your spirits? How do you attract your friends and family to come see you during your flareups, when one look at you in that much pain would scare anyone away? How do you get to appointments when you just can't drive (I know that I have no business behind the> wheel when I am in

blinding pain, but I have done it anyway, many times), or when you have a proceedure which requires you to have a driver? How do you shop if you can't push your wheelchair (I couldn't/can't since the biopsy in my armpit. And I know some of you have eruptions making your arms or hands too painful)? What do you wear on your feet when you can't wear shoes or slippers, and it is raining or snowing? Where do you find socks stretchy enough to fit over the bandages without hurting and making the dressing pull the fryable (sp?) tissue apart (I can't knit fast enough)? On a Friday or Saturday night when you can't get out, how do you keep from having a glass of wine to make you feel a little better, when it is bad for your liver cause of the pain meds? How do you get your laundry up and down the stairs to the washing machine when you can't do steps without holding the railing with both hands?> Tina> pg

'04

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[Guest guest]

hi tina,

thank you. i appreciate that. i may be in remission, but the

potential of reoccurrence is quite high. i can never, ever loose

focus or forget the fact that what i am enjoying is remission, NOT

cure. crohns disease is a funny thing. it can rear it's ugly head

in an instant and my past history is pg comes right along with it,

even with very mild crohns sx's.

the " grand rounds " i am referring to, i realize this is a little

confusing, i have often wondered why they call them the same name

myself, is meeting with 2nd year medical students in small groups to

focus on pg. u of m has grand rounds as part of their basic md

training in each speciality area during the 2nd year. so i meet with

groups of 5-7 2nd year medical students for about 5 minutes along

with my primary derm. we show them pics of my pg from the past, my

derm gives a brief introduction and then they are allowed to ask

questions of me or my derm. there are about 200 of these students,

so it takes a whole afternoon to get thru them all. for each

speciality area such as derm, they will focus on that speciality for

a full week. for the derm week, they bring in about 12 past

patients, each one has a different derm issue. we each go into

different rooms with a doctor. they may have had en patients there

before, but i would not know. we meet as a group for lunch then

break into or exam rooms. they protect our privacy so i have no clue

in most cases (unless it is a condition on their face or hands, or

they talk about it during lunch, but most times it is pretty quiet)

what the other 11 people have. i have done this since 2003, so i

figure i have come face to face with about 1,000 2nd year medical

students.

i guess there is only one way i can explain this. after getting a

handle on the pg and cd in 2003, the whole experience shooked me into

another dimension. i have a side to my personality that is very

forgiving, very compassionate. after learning about help groups on

the internet right after this, i though...wholey crackers man, what a

way to help oneself and avoid what i went thru. i made a committment

with myself, after reading and hearing what others were going thru,

to be a resouce person to try to help, to reach out, to try to assist

others in avoiding the pitfalls i had experienced. i read horror

cases of people going in to their docs and surgeons and having them

scaple their pg just to cause it to spread like wild fire. i guess

this whole thing left quite the impression on me.

i get a little irrate sometimes, you will have to excuse me on that.

i see no reason for any doctor or surgeon to do the absolute dumbist

things when it comes to this disease. there is enough information

out there now for them to use...there simply is no excuse. and yeah,

at some point, the poking and stabbing needs to stop. we know the

basic underlying diseases associated with pg, i sent you a list of

them and rebecca has posted that link here. these disease are pretty

straight forward in dx. if it ain't one of these, drop it already

doctor! let's get on with a treatment program, which should intail

short and long term goals (geezz, imagine that!!!). i can really,

REALLY get sarcastic when it comes to doctors sometimes.

well, you asked all the right questions. you know a lot about me

now...lol

take care,

jeff,

pg,

cd

>

> Hi Jeff,

> I have been appreciating your messages since I first joined. I am

deeply touched by the fact that you spend so much time supporting the

rest of us when you have been in remission for five years. Your

empathy is amazingly fresh and sincere. I wonder if I could bring

myself to do what you are doing. Bless you kind sir. If I was in

remission, I think the last thing I might want is to be reading about

it and being reminded five years down the road. I might want the

whole experience to remain out of mind and out of sight as much as

all the scars would allow.

> I was a bit confused reading about you missing ground rounds for

the first time in ages. Why do you go to ground rounds when you are

in remission?

>

> I was aware of the pg dx process that you describe below. I just

wonder when they finally leave me alone with the poking and cutting

and lab work. when do they exhaust the hunt for underlying cause and

accept the idio aspect? I don't know how much more I can take when we

all knew from the get go that the odds are in favor of idio. I am

physically and financially exhausted from all these years of

appointments and tests. And it is all causing such social isolation.

When I need my friends the most is when I have no time or energy for

them after my endless appointment schedule. This can really take its

toll on friendships. I have not faced years of such a single pointed

life since the initial years of parenting. My social skills atrophied

very badly when I was a new mother, and that had some universal

appeal for conversation. Now with pg, months go by and I feel like a

complete dud chatting about how my day went, what's new, etc.

Unemployment doesn't begin to cover the

> facets of isolation this is causing.

>

> I hope you hear back from your recent job application soon, and

favorably.

> Sincerely,

> Tina

> pg ;04