Re: Advice

[Guest guest]

Oh my gosh Robin! I have been so out of touch with things that I

didn't know you had been laid off! I know that things were going

badly with your employer but I didn't realize that it ended like that.

I hope that your new job will be understanding and intellectually

challenging for you.

As far as the rheumatologist is concerned. If I remember right,

isn't there some question of fibromyalgia mixed in the picture?

and back musculo-skelatal questions? If so, I would

recommend a rheumatologist that is sympathetic to those

conditions. You may find that fibromyalgia is a disease similar to

IBS as far as attitudes given by doctors - they may think that it is

" all in your head " so it is important to find a rheum that is

sympathetic to this condition. If you do, you may find that this

doctor wil have some helpful ideas for you. And because they are

very familiar with managing chronic diseases with a high pain

load, they may be helpful from that aspect too - the whole, " lets

evaluate your life and see what we can do to make things better "

approach. They are also involved with pain clinic partnerships

because of the chronic pain associated with arthritis and the

other rheum diseases so that is also helpful for a CPer. In

addition, they are used to treating very sick people - like lupus

crises or sjogren's or scleroderma for example. This means that

they are able to recognize when a chronic illness is becoming

more acute and are able to look at the whole body and how it

interacts with chronic illnesses. And - if there should be an

auto-immunity component to your CP they are the best at dealing

with this - both in recognizing it, running the right lab tests and

treating it. If you were to move to wisconsin I could recommend

several that are top of their field and would tell you like it is in a

respectful, caring and sympathetic manner.

So those are my thoughts: Find a really good Rheumatologist

that is sympathetic to the conditions that you think are why you

are being referred there and give them a try. One visit will tell you

whether there will be any benefit to you. Don't forget, benefits

can come from surprising places!

And I am sorry about the lay-off, but hope that the new job is even

better than the one you left.

Laurie

Oh - I am in the same boat as you right now, that is for sure. I am

in a holding pattern with any treatment because I need to assess

where I am at. I am undergoing Physical Therapy and using a

TENS unit as well as having my pain meds increased. I tried

trigger point injections and muscle relaxers to try to break the

pain cycle of irritated pancreas - spasming muscles - painful

muscles - etc. Although I have been told that I need to find a GI

and explore more therapeutic options I feel that at this time, I

have exhausted what is available to me - I am worn out from

ERCPs, stents and sphincterotomies and IVs and blood work,

etc. I just want to live my life as far away from the pancreas as I

can. I am not sure what the answer is when you get to the stage

we are at, other than manage what you can and deal with any

acute symptoms that leave you no other choice but to.

[Guest guest]

Robin: I can't offer any pearls of wisdom here...but I can

commiserate with you and empathize. My story has only been going on

since end of January of this year....with about a 2 week let up

after GB surgery and now I'm in a holding pattern again. Nothing

has shown up on tests except in the very beginning with with a

modest rise in amylase/lipase levels. I've had every test known to

man except ERCP and ERCP w/manometry which I belive will be the next

road to go down for this. GI doc has referred me to the Lahey

Clinic in Boston, MA but appt. isn't until July 22nd!! So here I

sit (like you) in daily pain, losing pay from my job (although they

are trying to get something going for a Work at Home program but

that will only be approved thru mid-Sept and then.......????? But,

even with that they haven't gotten the paperwork back to me that I

need to sign and I talked to my boss last week about it.

At any rate, if you need someone to talk to you know that we are all

here.....and you can email me privately if you like. What are the

conditions that you are being sent to the rheumy for??

best wishes to you and your husband

>

> Hi Everyone:

>

> I seem to be at a point in my cp where I take pain medication

every single day, suffer with nausea and tiredness most days, not to

mention depression that comes and goes. The last ERCP that I had

done in June 2003, has been the last procedure that I've had done,

in fact just about the last thing I have done at all related to my

cp, other than my monthly visits to the pain specialist.

>

> My husband and I feel like there is something that we should be

doing, but we don't know what it should be. I am supposed to have

an appointment with a rhematologist this Thursday, but really don't

know what that might have to do with cp. Does anyone have any

thoughts on that? My husband thinks I should go, on the theory that

you never know, I don't feel like going through the whole story with

someone who won't be able to help me. Unless those of you with cp,

have had success going this route.

>

> Of course, then we run into the problem of taking time off from

work for doctor's appointments. I got laid off from my job of nine

years a month ago, and started a new job two days later. My new job

knows that I was very sick last year, and that I have a chronic

illess, but don't know of course all that entails, so I am nervous

to start taking alot of time off for appointments. I already have

to go once a month to the pain doctor.

>

> So, is anyone else in the same boat? Seem to just be in a holding

pattern, not getting worse, but definitely not getting better.

Where am I supposed to go from here?

>

> Any and all thoughts would be greatly appreciated.

>

> Robin

[Guest guest]

I definitely feel that way, just seem to be moving in time from one

appointment to the next with no end in sight and to what end. I was

officially diagnosed with cp last week after three YEARS of hell. I and my

family go to a therapist once a month, I sit there and think (as the talk

revolves around me and my illness) they have no clue. In the mean time you

take your pain meds, stay home and watch as the kids head off to school and

sports and you stay home, watch you wife/husband head off to work and you

stay home. I think there is a pattern here, however I have not found a way

out of my illness loop.

Advice

Hi Everyone:

I seem to be at a point in my cp where I take pain medication every single

day, suffer with nausea and tiredness most days, not to mention depression

that comes and goes. The last ERCP that I had done in June 2003, has been

the last procedure that I've had done, in fact just about the last thing I

have done at all related to my cp, other than my monthly visits to the pain

specialist.

My husband and I feel like there is something that we should be doing, but

we don't know what it should be. I am supposed to have an appointment with

a rhematologist this Thursday, but really don't know what that might have to

do with cp. Does anyone have any thoughts on that? My husband thinks I

should go, on the theory that you never know, I don't feel like going

through the whole story with someone who won't be able to help me. Unless

those of you with cp, have had success going this route.

Of course, then we run into the problem of taking time off from work for

doctor's appointments. I got laid off from my job of nine years a month

ago, and started a new job two days later. My new job knows that I was very

sick last year, and that I have a chronic illess, but don't know of course

all that entails, so I am nervous to start taking alot of time off for

appointments. I already have to go once a month to the pain doctor.

So, is anyone else in the same boat? Seem to just be in a holding pattern,

not getting worse, but definitely not getting better. Where am I supposed

to go from here?

Any and all thoughts would be greatly appreciated.

Robin

[Guest guest]

Hi Jane

Welcome to the site - you will I am sure find it a great source of

support and information.

I have a similar case to you - I am 27 years old with a severe

underbite. My old orthodontist wanted to do the surgery 10 years ago

but I was too upset and too senstive to have it done. I'm glad I put

it off 'till now because the technology has got SOOOOO much better. I

had my braces put on in April and am having the surgery in 3 weeks

time.

I have also been very self-conscious of my appearance my whole life

and teasing taunts from the kids at school never quite left my

memory. I've been bulimic since 15 - this is something I never

admitted to myself until I confronted the surgery and all my feelings

about myself and my appearance. While I still don't really understand

what causes my bulimia, and I don't think its a really serious case,

I am sure it has something to do with how I feel about my underbite.

Since starting this process I have had to really confront myself -

including telling friends about the surgery and dealing with braces -

and I've really got a lot better. It still bothers me a lot but now I

can actually have a conversation about my underbite without crying -

I couldn't even talk about it with my mum before without crying. I

think it is very empowering to go through this surgery, to know that

you are taking control of something that affects your life. I thought

I wouldn't go out the house after having braces put on but I haven't

let it stop my life and have even just started dating someone!

The decision of whether or not to have the surgery is very personal

and it is entirely YOUR decision - NOONE elses. I haven't even been

through it yet so I'm speaking only from one side of the fence but I

am so happy that I am doing this, even though I really have put my

life on hold for the past year (including delaying graduation from a

Masters degree and putting off looking for a permanent job), I know

that this is going to have a great effect on the next 30-40-50 years

of my life. Whats one year!?!

Don't let this stop you living your life. Get out of the house, meet

people, have fun - you only have one shot at life. And know that by

even being on this site you've already taken a big step forward in

empowering yourself to take control of your life and making yourself

happy. Shop around for a good orthodontist and surgeon who are

sensitive and understanding about how you feel - I went to 3

different orthos before meeting mine who were all incredibly

insensitive and just made me feel horrible. Then I met my OD and he

was very kind and supportive - it has transformed this whole process

for me - I even look forward to my OD visits because its such fun!!!

If you would ever like to chat feel free to drop me an email.

Jo

> Hi all,

> I'm new to this site,it seems a good place of support.I'm just in

> need of advice.

> I'm 26 years old in a weeks time and have finally had enough of my

> jaw abnormalty.

> Basically when i was around 12 i went to see an orthodontist who

> looked at my bite and told my parents that as i'm not in any pain

> there woud be no need to go through with such dreadful

surgery.Right

> now i am really angry that they did not care about my appearence.

> I have a fairly slight underbite with asymmetry.I've never like how

i

> looked but put up with it,until 2 years ago,i had 3 teeth removed

one

> was on the upper jaw and my bite has collapsed on that side moving

my

> top teeth halfway behind my lower jaw.I hate how ugly i look.I will

> not leave the house.

> The problem is,i think yes,if i feel that way then go for

surgery.But

> i have suffered from severe depression,anxiety and eating disorders

> since i was 19 which has resulted in me having no life and missing

> all my youth.Now if i go ahead with this surgery then i will be

> putting my life on even greater hold.I mean how old will i be

before

> i can actually go out? 30? i have no friends,no life.and i want to

> start getting those things back now,i've been patient enough.

> Basically i'm asking if you were in my position would you go ahead

> with the surgery? I haven't seen anyone about it yet,as my dentist

> just does routine fillings and does not mention my jaw.

> I'm just so depressed and anxious,i don't know what to do for the

> best. any reply will be greatly

> appreciated.thanks so much =).

> Jane

[Guest guest]

Hi Jane,

As Jo said in her e-mail, you need to get out and get on with life.

I was also ostracized (sp?) as a child but learned to get over it

early on in life. I was quite prepared to live with my looks for the

rest of my life, but not the TMJ problems I was starting to have in

my late 40s (I'll be 50 next month, celebrating my 3rd anniversary

post-op next week). If you're interested in seeing the physical

change, you can see my photos on site 2 at

http://health.groups.yahoo.com/group/orthognathicsurgerysite2 in the

photos section Fiddlesticks folder (you'll have to join that

group to see photos and post messages). The functional changes are

what mattered to me, though, and I am quite happy with that. I was a

life-long mouth breather, and now I can close my mouth properly and

breathe through my nose, as well as chew properly and open without

pain.

The problem is not HOW you look, it's how you FEEL about how you

look. Surgery is not a magic pill for that. Yes, you probably do

have functional problems that can be resolved with surgery (and that

may result in external change), but do not expect it to solve the

depression and other emotional problems that you have. You may need

to seek out therapy for that.

There are many, many people out there who value WHO a person is

rather than what they look like. But they will not come knocking on

your door. You need to get out, get involved in something that you

really like, and the friends will come from that.

I was fortunate enough to have talent in music, and had music

lessons and played in a number of ensembles and orchestras growing

up. I met many friends who valued me for that, and for who I was,

not how I looked. I didn't have a lot of friends at home or school,

but that didn't matter to me. The friends I did have were the real

deal.

Nobody can make you feel bad about your looks but you. I imagine

that, if the whole world were blind, nobody would think twice about

how we looked. It would only matter how we treated each other. So be

gentle to yourself.

I hope that helps.

> Hi all,

> I'm new to this site,it seems a good place of support.I'm just in

> need of advice.

> I'm 26 years old in a weeks time and have finally had enough of my

> jaw abnormalty.

> Basically when i was around 12 i went to see an orthodontist who

> looked at my bite and told my parents that as i'm not in any pain

> there woud be no need to go through with such dreadful

surgery.Right

> now i am really angry that they did not care about my appearence.

> I have a fairly slight underbite with asymmetry.I've never like

how i

> looked but put up with it,until 2 years ago,i had 3 teeth removed

one

> was on the upper jaw and my bite has collapsed on that side moving

my

> top teeth halfway behind my lower jaw.I hate how ugly i look.I

will

> not leave the house.

> The problem is,i think yes,if i feel that way then go for

surgery.But

> i have suffered from severe depression,anxiety and eating

disorders

> since i was 19 which has resulted in me having no life and missing

> all my youth.Now if i go ahead with this surgery then i will be

> putting my life on even greater hold.I mean how old will i be

before

> i can actually go out? 30? i have no friends,no life.and i want to

> start getting those things back now,i've been patient enough.

> Basically i'm asking if you were in my position would you go ahead

> with the surgery? I haven't seen anyone about it yet,as my dentist

> just does routine fillings and does not mention my jaw.

> I'm just so depressed and anxious,i don't know what to do for the

> best. any reply will be greatly

> appreciated.thanks so much =).

> Jane