Re: Life sucks

[Guest guest]

Just curious, can't they use a very small amount of Celebrex like they do when they test you for allergies. If I were afflicted with arthritis and had only a grim picture of my life as you, I would keep insisting they come up with something. Pain meds are not the only answer. Keep bugging those docs after all, you're the one that pays their salary. I was so convinced when I took celebrex that I'd have an anaphalactic reaction that I had my mom and dad sitting with me with the epy pen in hand. My mother was scared to death. Call your doc and ask if they can do an allergy test to see if you truely are allergic to it. I'd hate to see you live your life without an anti inflamatory for the pain. I think Vioxx is in the same family as Celebrex too. If it makes you feel any better, I can't take steroids because I start to lose my vision. As a samters patient, you know steroids are used constantly to reduce the swelling. My doctor used to shake his head in frustration trying to bring me some relief. Most of the nasal sprays have steroids in them. My favorite used to be flonase. Okay, I'll be quiet now.

Tami

Life sucks> > > Sampter's sucks...> I hate how I feel. After five surgeries, still sucks.> Asthma sucks.> I need to take anti-inflamatories for another problem but I can't > because of Sampter's> > Thanks life, what's next...> > >

[Guest guest]

Sorry. I cannot have an epy shot due to the fac that one time

doctor's in the emergency room watched in awe as it did not work and

it worked in reverse. I am hyper allergic to many things. If I keep

trying I will find doctor who will try what you have suggested.

Unfortunately, he will be a charlatan. I see doctors at many of the

university hospitals in Philadelphia where I live. We already know

the outcome of any test for an allergic reaction. I appreciate the

input from everyone, however, no one here is an MD, therefore, any

suggestion must be met with skepticism. Believe me, I wish things

were different. Fortunately for me, I have decided not to allow life

to roll over me like that. I have gone through hell almost all of my

life. Even had my first Caldwell-Luc at age 14, much younger than

most patients. It was either that or I die. I thought maybe with all

the close calls as I had in my younger years, I would catch a break

later in life. That is not the case. I will not go through the pain

that I saw my father go through with terrible arthritis. At least he

can take something for it. Even if I take a small dose of celebrex

or any anti-inflammatory, I will have an attack and die. I spent

time yesterday speaking with my Dr and pharmacist who know my

condition very well. No one who values their medical license will

play games with my allergies. Insurance premiums for Drs. are high

enogh in PA. They just got back off strike, believe it or not. And

before you say it, no I am not going to waste my time and money

trying to find a cure that isn't there. There is not sure for any of

my problems. I will be having an appointment with an athritis

specialist and I will ask how long I have until my quality of life

becomes poor and how long it will be until I cannot work. I will

adjust my life according to what time I have left until becoming an

invalid wrything in pain. I have fought so hard to have a normal

life and this is what I get for my effort. I have neither the energy

nor the desire to fight any longer. It is time to enjoy the time I

have left. BTW, everyone do yourself a favor and stop looking at

this from a western point of view. If you are able, you can fight to

the death, but if you cannot fight, it is time to go. When I become

a burden to my friends and family, there will be no desire to fight

within me. It will be time to go.

> > Yeah it sucks, but I do have a suggestion for you about anti

> inflamatories. I take Celebrex every single day with no

reaction.

> I'm allergic to aspirin, and tylenol. Please talk to your

doctor.

> Celebrex is a cox 2 inhibitor, whereas most anti inflamatories

are

> cox 1 (which I am deathly allergic to). My doctor did a lot of

> research on this and there are about 10 of us with Samters in

his

> study group that are all taking it with no reaction. Now I'm

not

> saying that you will not have a reaction, but I wouldn't

hesitate to

> try it (in a medical facility just in case). I take a 100

miligrams

> a day. I swear that if I wasn't taking it, I would be in bad

shape

> every single day of my life. Some doctors won't give it out

because

> it does warn people with aspirin sensitive asthma not to take

it. I

> was very angry with the sickness a few weeks ago but thank god I

> feel better now. Hang in there.

> > Tami

> >

> > Life sucks

> >

> >

> > Sampter's sucks...

> > I hate how I feel. After five surgeries, still sucks.

> > Asthma sucks.

> > I need to take anti-inflamatories for another problem but I

> can't

> > because of Sampter's

> >

> > Thanks life, what's next...

> >

> >

> >

[Guest guest]

You are correct, we are not doctors. I hate to know you're in pain and your quality of life is so poor. I just wanted to help and can see things are stacked up against you. I wish you the best. Tami

Life sucks> > > > > > Sampter's sucks...> > I hate how I feel. After five surgeries, still sucks.> > Asthma sucks.> > I need to take anti-inflamatories for another problem but I > can't > > because of Sampter's> > > > Thanks life, what's next...> > > > > >

[Guest guest]

I also live outside of Philadelphia and my ENT is at HUP. Dr.

Bolger from HUP (he is now at Walter ) had sent me over to

Presbyterian Hospital, to see a Rheumotologist, Dr. Luchi at

one point. She was seeing another Samter's patient of his. I had a

weird rash they couldn't pinpoint at HUP, and thought perhaps it was

Lupus or RA. Turned out to be ian episode from a steroid

taper with Biaxin. But she was very nice and informative. You may

want to consider a second opinion with her.

HUP, Hahnemann and Hospitals wouldn't touch me for an ASA

desensitization. They all said too risky. I did undergo procedure

at s Hopkins with Dr. Bruce Bochner this past January. I must

say, I do feel better on the ASA, but have yet to get off oral

steroids completely. I would consider this an option for you. At

least you could take some ASA or NSAIDS for some pain relief. call

Scipps and ask for a patient's guide to ASA desensitization to be

mailed to you.

I am a health care professional and I can't overstate what a great

asset the web is to patients. Keep researching and emailing and

calling hospitals and physicians until you can find

someone/something to help you.

Good Luck-

Barb V

[Guest guest]

" Also i had to lie to my support worker Graham saying its the bus

times then i've been thinking of some other thing that has been

bothering me to finish that late because of lots of people on buses

finish work around those times and its all crowded and it causes me

anxiety and it triggers my social anxiety problems too and also along

with aspies too, makes me hard to cope with my illnesses etc and the

tutor told me they cannot do nothing about the change, she said its

only for 4 weeks i have to deal with it, but 4 weeks is too long for

someone to be in my shoes like that. "

1) You probably should be as truthful as you can with Graham. Lying

gets you nowhere. Maybe you feel like you are being placed into a

position where you have to lie, but still, telling the truth is

always the best.

2) As much as we with AS hate the fact that we have to deal with

other people, it is fact that we will not be able to make it in this

world unless we make an effort to do what we must, even if we do not

want to.

3) It will be difficult for you, but four weeks really is not as long

as it seems. You will get through it in no time, and you may feel

good afterwards for having done so.

" i slam the door when i get in the bad mood. Because sometimes nobody

ever leaves me alone, and its like its my fault now. My mother said

if none of us start being quietier we could get throwed out on the

streets. "

It's fun to slam doors because it burns off angers and it sends a

message to everyone else that you are angry., Still, it is

unacceptable behavior. There are better ways to express your

behavior. As you can see anyway, you have no choice now but to avoid

slamming doors, otherwise youmight indeed get thrown out of the house.

Tom

Administrator

[Guest guest]

thanks Tom, true i should be really. its dificult face to face, so i perfer emails. Yeah i becareful about slamming doors. SUsie

" Also i had to lie to my support worker Graham saying its the bus times then i've been thinking of some other thing that has been bothering me to finish that late because of lots of people on buses finish work around those times and its all crowded and it causes me anxiety and it triggers my social anxiety problems too and also along with aspies too, makes me hard to cope with my illnesses etc and the

tutor told me they cannot do nothing about the change, she said its only for 4 weeks i have to deal with it, but 4 weeks is too long for someone to be in my shoes like that. " 1) You probably should be as truthful as you can with Graham. Lying gets you nowhere. Maybe you feel like you are being placed into a position where you have to lie, but still, telling the truth is always the best.2) As much as we with AS hate the fact that we have to deal with other people, it is fact that we will not be able to make it in this world unless we make an effort to do what we must, even if we do not want to.3) It will be difficult for you, but four weeks really is not as long as it seems. You will get through it in no time, and you may feel good afterwards for having done so. " i slam the door when i get in the bad mood. Because sometimes nobody ever leaves me alone, and its like its my fault now. My mother said if none of us start being quietier we could get throwed out on the streets. " It's fun to slam doors because it burns off angers and it sends a message to everyone else that you are angry., Still, it is unacceptable behavior. There are better ways to express your behavior. As you can see anyway, you have no choice now but to avoid slamming doors, otherwise youmight indeed get thrown out of the house.Tom

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