Re: Frustrated!!!

[Guest guest]

,

I just wanted to let you know that I am now 26 and got my first

tattoo at age 18. Were my parents and my doctors PISSED YES.

I did it anyway. I checked the place out and watched them sterilize

everything. I fully understand how you feel just watching everyone

getting something and you just had to be an observer.

I also have 9 peircings. I have not hand any problems with them. But

I did make sure to clean them better and constantly check on them

since my body takes longer to heal.

I am not telling you to run out and get your tongue peirced but

perhaps if you really wanted something pierced or tatooed you could

take all the facts to your doctor.

I am just one person who did not have any problems I am sure there

are people who did.

a

MCTD & JRA

> I am just having one of those days when I hate being a kid with

JRA. Today

> while my sister, boyfriend, two friends and I were in Berkley we

decided to

> stop by this place

> Industrial Strength.. its a tattooing/peircing place. Everyone

decided they

> would get something pierced.. Everyone but me. I wanted to get my

tongue

> pierced (I know that's weird.. but I'm 19!) or a tattoo (my sister

and I were

> supposed to get matching ones.. ) back in December for my

birthday.. my mom said

> if my doctors said it was ok then she was ok with it.. My doctors

said no.. of

> course not.. its to dangerous.. Risk of infection is high and then

there was a

> whole other list of reasons why I couldn't get it done... Now I

know some of

> you being parents and all are thinking.. well this is a good

thing.. Getting

> your tongue pierced? What are you crazy? But as I sat there

watching everyone

> get to do this.. Just being normal 19-21 year olds.. getting this

all done

> without a care in the world.. Not having to think about what

consequences there

> might.. I started to get sad.. I don't have that ability.. And it

sucks!

> Everyone my age is out getting tattoo's, staying out late, drinking

and partying..

> Now I'm not saying that I want all that.. I just want a simple

piercing.. But

> even that is not an option to me. I don't want to complain.. I

know this

> isn't the worst thing in the world.. It just makes me sad.. I want

the so called

> " normal " life my friends are living. I can't even plan a simple

spring break

> trip without having the plan B well what if I flare.. or the ok so

I can't

> drive all that or I'm useless that week.. or the ok so how will I

get my Enbrel

> from point A to point B.. JRA has taken the spontaneity out of my

life.. And

> today.. its just getting to me..

>

> Having a why me kind of day..

> (poly JRA and Spondy, boring even at 19)

[Guest guest]

Thanks a.. I'm glad to know not all of us drop dead from getting piercings or tattoos.. the place in Berkley where I want to get it done.. the guy actually went to med school and then decided he wanted to be a peircer instead.. But the doctor actually said today that the tongue ring was A ok.. His words were basically well it wont hurt you but I dont see why you would want it..

Tammy- My mom actually doesn't mind.. and luckily the tongue is one of those things that doesnt stretch to much luckily.. Your a childhood cancer survivor? Very impressive.. I work at a camp with kids who have cancer.. and their siblings too.. Best thing I have ever done in my life..

Robbin- My dad was the same way.. Totally against the tattoo's and make up.. Your too pretty to hide your face blah blah blah.. He doesn't really mind the piercings.. As long as its not on the face.. I love Micheal Montgomery..

Val- LoL maybe the fad will be out.. Or maybe it will be worse..He's 6 now.. so he has a long wait till he's old enough to get that done..

Rusty- Mr cool guy with the Earing.. You are definitely one of the coolest!! Thank you for your support as always your wisdom is really appreciated!

So now that I have the A-OK to get it done I will think it over. The way I explained it to my mom was that piercing is the new tattoo.. Except in a year or two or three when I grow out of this stage.. I can remove it and go on my merry way. My friend Jen explained it this way.. I've been through so much pain and pokes and prods.. and I have so many scars to start with at least I got to choose this one.. and I actually like it..( She is a childhood leukemia survivor she has a really cute tattoo around her ankel its the logo of camp okizu the camp I volunteer at each summer.. and above each of the little faces is a name of a person who she knew that passed from cancer.. It's sad.. but to her its a battle wound she got to choose). So I will think it over... and really think whether I am just doing it to fit in or because I really want it.. Thank you everyone for your advice..

Lots of Love

[Guest guest]

Hi ,

Sweetie, you are anything but boring! You are smart, brave, creative and strong

and compassionate. Hang in there - everyone has their challenges - many are

less visible. I hope that you find an option that gives you the same sense of

expression.

Though I cringe at the idea of piercings and tatoos when my Robbie gets older -

I am hoping that the fad will fade - I understand the wanting to fit in. I am

sure that whatever it is when Robbie is your age will be equally likely to give

me gray hair (oops, I mean more gray hair!) I hope I am a caring and

understanding Mom when those days come along!

I didn't have time when I was going though the posts last week - but I think

what you did speaking up about JRA when you met the person who was involved in

the fund raising was awesome. You make us proud!

Val

Rob's Mom (6,systemic)

In a message dated 3/27/2004 10:56:50 PM Eastern Standard Time, bncknwurnumber

writes:

> I am just having one of those days when I hate being a kid with JRA. Today

while my sister, boyfriend, two friends and I were in Berkley we decided to stop

by this place

> Industrial Strength.. its a tattooing/peircing place. Everyone decided they

would get something pierced.. Everyone but me. I wanted to get my tongue

pierced (I know that's weird.. but I'm 19!) or a tattoo (my sister and I were

supposed to get matching ones.. ) back in December for my birthday.. my mom said

if my doctors said it was ok then she was ok with it.. My doctors said no.. of

course not.. its to dangerous.. Risk of infection is high and then there was a

whole other list of reasons why I couldn't get it done... Now I know some of

you being parents and all are thinking.. well this is a good thing.. Getting

your tongue pierced? What are you crazy? But as I sat there watching everyone

get to do this.. Just being normal 19-21 year olds.. getting this all done

without a care in the world.. Not having to think about what consequences there

might.. I started to get sad.. I don't have that ability.. And it sucks!

Everyone my age is out getting tattoo's, staying out late, drinking and

partying.. Now I'm not saying that I want all that.. I just want a simple

piercing.. But even that is not an option to me. I don't want to complain.. I

know this isn't the worst thing in the world.. It just makes me sad.. I want the

so called " normal " life my friends are living. I can't even plan a simple

spring break trip without having the plan B well what if I flare.. or the ok so

I can't drive all that or I'm useless that week.. or the ok so how will I get my

Enbrel from point A to point B.. JRA has taken the spontaneity out of my life..

And today.. its just getting to me..

>

> Having a why me kind of day..

> (poly JRA and Spondy, boring even at 19)

>

>

>

>

[Guest guest]

Hi ,

Since getting your docs approval have you made up your mind yet?Just curious. has been begging to get both his ears pierced since he was 4.April 14th is the big day for him.It's cute though,he doesn't understand why he has to wear starter earings for 6 weeks before we can go to Spencers and get him his little dragons.I am trying to talk him into the CZ's to start with but he likes blue so he is going with saphires.Ugh,he's already pretty enough to be a girl.I can't wait to get him in the little silver loops with the ball in the middle.

My opinion is he's not gay and it's not the 70's(rt ear only,it's not the 80's and the bad boys getting their lft ear pierced.It's a form of personal expression and at any time he can take them out and never put them in again.

I love the look of belly rings but there isn't enough Emla or a enough alcahol in the world to let someone stab some huge needle in me.I found some realy cool fake ones though.How do you guys do it?Are there places that the person piercing has some sort of medical degree and can inject novacaine?My nephew has his nipple pierced and I can't even imagine how he tolerated it.

Good luck with your decision.

Hugs

Becki and 5 systemic

[Guest guest]

I did actually go through with it yesterday. I really like it a lot. I didn't even think it hurt really.. And the weird thing is my tongue barely swelled.. I guess for once me being on medication actually helped the situation. But I totally love it.. It looks really cute. And in two weeks I can change it to a smaller ball..It only takes 4-6 weeks for it to completely heal.. which is rather low compared to the belly ring which takes 6 months to a year.. But I went shopping and found a really cute tongue ring with with little pink balls.. I'm kind of girly.. I'm glad I got it done. Because when I got down to thinking about it.. I realized that the person i was doing it for was me.. I think it looks neat and I really like it.. Granted its kind of weird.. But I dunno I'm kind of weird too.

sounds so cute.. Little dragons. Yeah I hated the starter earings too.. I got my ears pierced when I was 4.. I had purple stones in mine if I recall right.. I don't think ear piercings are gay at all. I know a ton of guys who have their ears.. one ear.. both ears.. two on one ear.. Even the cartiledge.. pierced.. Its the new style.. Piercings are the new tattoo's.. It's easy to make that statement and when your statement changes you can remove it.. The belly ring is one that takes a while to heal.. Mine never even really hurt. Just close your eyes and breath deep before you know it its done.. My boyfriend has his nipples pierced.. He nearly cried when he got them done.. And almost passed out. He use to be a hemopheliac when he was little he had ITP and because of that big injuries or shocks to his body he kind of gets pale and passes out..But luckily he only got pale.. didn't pass out though. So yeah maybe getting that done not the best idea for him.. But he likes them.. So whatever.. But yeah I'm glad I got it done. Tell good luck with his piercings.. I'm betting he wont even flinch.. the little guy has been through so much already.. He's so brave..

Lots of Love

[Guest guest]

Hi :

Congrats. I am happy you are happy with your choice. Bet you can't wait to

change to the pink ones eh! How's it feeling today? I know it won't be to

long before Caitlin is asking for the tongue piercing too. She just got her

ears pierced in October and wants second piercing on her ears. Maybe in the

summer:)

Take care.

Patty

[Guest guest]

My tongue is feeling awesome! Because I dont have mad amounts of swelling the bar that's in is just really annoying. They make it extra long to give room for the tongue to swell.. But all its doing is making me talk a little weird. I get to change it in two weeks.. and the bar will be a normal size..and cuter.. I think Caitlin should go for it, double ear piercings are cool!! LoL I got my ears pierced when I was 4.. My mom said "if you can sit there and let them use a big needle through your ear lobe then I'll let you get it done" I barely flinched.. She was so sure that I would freak when I saw the piercing gun. I wasn't allowed to get anything pierced after that till I was 13 when I got my cartiledge pierced on my left ear. She never doubted my ambition after that. If I said I could do something.. I was most likely going to do it. I have 5 piercings now.. My sister Brittany who is the same age has 13.. She's a wild child though.

Lots of Love

PS I don't think I've seen a picture of Caitlin yet.. is she in the JRA-list photo album?

[Guest guest]

On 8/4/05 6:37 PM, " Queen " <divaqueen127@...> wrote:

Hi!

My ENT doesn't seem to

be very helpful, in fact, he doesn't really explain anything to me

(he kinda rushes me out of the office so he can take his next

patient), I've actually had to take things into my own hands. I made

an appt. with an allergist, don't know how much it'll help, but it's

worth a try! Does anyone know if immunology (allergy shots) helps?

I'm looking for a good ENT who

is familiar with Samter's Triad. I called around to several

different ENT's (and allergists) in my area and when I mentioned

Samter's (Aspirin)Triad they're all like " duh!!!what is that??? " I

actually had to explain what it is to several of them!

I'm becoming very frustrated at this point with doctors being paid so

much to know so little! Is it just me? Do I need to take it down a

notch?

Hi Queen,

I understand your frustration. You do need to take things into your own hands. The doctors don’t see enough patients with samters to instinctively know how to handle the situation (other than avoid NSAID’s). I had a ENT who knew about samters and pushed Singulair which didn’t work for me. I had a pulmonoligist who couldn’t help me at all, he seemed to be focused on the fact that I don’t have emphysema, yet. My experience has been to give up on finding a doctor who has a cure and find a doctor who will work for me, listen to me and do some of their own research. Finding a doctor who is willing to spend some time on you is a godsend. I blame the insurance companies for the lack of time and attention because they won’t pay for more than 15 minutes.

I have had allergy shots and they don’t make sense to me. I have true allergies but also sensitivities to VOC’s, perfumes, building dust and lots of unexpected things. I feel that I need to improve my immune system and reduce my sensitivity.

I know you have heard it before, but the aspirin desensitization has helped me tremendously.

Take charge.

Pam

[Guest guest]

Pamela: Where do you live? If your allergist is knowledegeable he or she may be helpful. Allergy testing and shots are helpful if you have allergies. Many Samter's patients don't. You have to be tested to know for sure. Carol

Re: FRUSTRATED!!!

On 8/4/05 6:37 PM, "Queen" <divaqueen127@...> wrote:

Hi!My ENT doesn't seem to be very helpful, in fact, he doesn't really explain anything to me (he kinda rushes me out of the office so he can take his next patient), I've actually had to take things into my own hands. I made an appt. with an allergist, don't know how much it'll help, but it's worth a try! Does anyone know if immunology (allergy shots) helps? I'm looking for a good ENT who is familiar with Samter's Triad. I called around to several different ENT's (and allergists) in my area and when I mentioned Samter's (Aspirin)Triad they're all like "duh!!!what is that???" I actually had to explain what it is to several of them!I'm becoming very frustrated at this point with doctors being paid so much to know so little! Is it just me? Do I need to take it down a notch?Hi Queen,I understand your frustration. You do need to take things into your own hands. The doctors don’t see enough patients with samters to instinctively know how to handle the situation (other than avoid NSAID’s). I had a ENT who knew about samters and pushed Singulair which didn’t work for me. I had a pulmonoligist who couldn’t help me at all, he seemed to be focused on the fact that I don’t have emphysema, yet. My experience has been to give up on finding a doctor who has a cure and find a doctor who will work for me, listen to me and do some of their own research. Finding a doctor who is willing to spend some time on you is a godsend. I blame the insurance companies for the lack of time and attention because they won’t pay for more than 15 minutes.I have had allergy shots and they don’t make sense to me. I have true allergies but also sensitivities to VOC’s, perfumes, building dust and lots of unexpected things. I feel that I need to improve my immune system and reduce my sensitivity. I know you have heard it before, but the aspirin desensitization has helped me tremendously.Take charge.Pam

[Guest guest]

There is a Dr. named Bosso in the Northern New Jersey area who

specializes in Samters. Your frustration is justified, unfortunately

we often need to be the educators.

Lori

[Guest guest]

You'e right... I don't handle stress very well, in fact I am an emotional eater which is how I put on so much weight (Prednisone helped a little with that too!) I don't really know what my regimen is because I'm so new at this. I kinda feel like a guinea pig. I've seen so many doctors who have tried so many things. But I'll keep educating myself. Thanx for the info and I'll be looking for the info from Scripps.Toni Earle <toniearle2003@...> wrote:

Queen,

We all feel your frustration. It took me several doctors, GPs, allergists, until one finally discovered the Samters. Then, my ENT at County+USC in Los Angeles, seemed to be pretty up on it, but I haven't heard or seen him since my surgery a year ago. A new doctor I queried was steadfast against the aspirin desens for me, but I'm not taking that as the last word. Someone said that Samters is not caused by allergies, but for some reason, we all seem to by highly allergic to everything and anything and something new everyday. I recommend you try to control the stress, stick to the regimens that seem to help and keep searching until you find a doctor who will help. I contacted the people at the Scripps in San Diego and they were very helpful and willing to discuss the possibilities of what they can do. So, there are medical professionals out there who will help. They just have to know which code to plug in for the insurance form

(grin). Perhaps they can refer you to a group in your area that they are familiar with. I'll forward the email I received from them offline.

Good luck,Queen <divaqueen127@...> wrote:

Hi!I'm curious... What exactly is Methotrxate and how does it slow down polyp growth (how does it work)? Also, if anyone has taken Diflucan long term, what are the side effects? I have an appt. coming up soon and want to ask for any of these two things. My ENT doesn't seem to be very helpful, in fact, he doesn't really explain anything to me (he kinda rushes me out of the office so he can take his next patient), I've actually had to take things into my own hands. I made an appt. with an allergist, don't know how much it'll help, but it's worth a try! Does anyone know if immunology (allergy shots) helps?Is anyone familiar with the NJ area? I'm looking for a good ENT who is familiar with Samter's Triad. I called around to several different ENT's (and allergists) in my area and when I

mentioned Samter's (Aspirin)Triad they're all like "duh!!!what is that???" I actually had to explain what it is to several of them!I'm becoming very frustrated at this point with doctors being paid so much to know so little! Is it just me? Do I need to take it down a notch?

__________________________________________________

[Guest guest]

Hi Pamela!

I am very allergic also. My new allergist just started allergy testing on me. She also says she does aspirin desens but does not recommend it for me because she says I am highly allergic, and , once I'm desensitized I'll have to be on aspirin long term and she would only recommend that if I had arthritis or heart problems. She did make up a nasal spray for me that she says is better than Prednisone. I'll find it and e-mail it back to you. Haven't tried it yet, but when I do I'll let you know how it works. Pamela <pam@...> wrote:

On 8/4/05 6:37 PM, "Queen" <divaqueen127@...> wrote:

Hi!My ENT doesn't seem to be very helpful, in fact, he doesn't really explain anything to me (he kinda rushes me out of the office so he can take his next patient), I've actually had to take things into my own hands. I made an appt. with an allergist, don't know how much it'll help, but it's worth a try! Does anyone know if immunology (allergy shots) helps? I'm looking for a good ENT who is familiar with Samter's Triad. I called around to several different ENT's (and allergists) in my area and when I mentioned Samter's (Aspirin)Triad they're all like "duh!!!what is that???" I actually had to explain what it is to several of them!I'm becoming very frustrated at this point with doctors being paid so much to know so little! Is it just me? Do I need to take it down a notch?Hi

Queen,I understand your frustration. You do need to take things into your own hands. The doctors don’t see enough patients with samters to instinctively know how to handle the situation (other than avoid NSAID’s). I had a ENT who knew about samters and pushed Singulair which didn’t work for me. I had a pulmonoligist who couldn’t help me at all, he seemed to be focused on the fact that I don’t have emphysema, yet. My experience has been to give up on finding a doctor who has a cure and find a doctor who will work for me, listen to me and do some of their own research. Finding a doctor who is willing to spend some time on you is a godsend. I blame the insurance companies for the lack of time and attention because they won’t pay for more than 15 minutes.I have had allergy shots and they don’t make sense to me. I have true allergies but also sensitivities to VOC’s, perfumes, building dust and lots of unexpected things.

I feel that I need to improve my immune system and reduce my sensitivity. I know you have heard it before, but the aspirin desensitization has helped me tremendously.Take charge.Pam __________________________________________________

[Guest guest]

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

Re: FRUSTRATED!!!

On 8/4/05 6:37 PM, "Queen" <divaqueen127@...> wrote:

Hi!My ENT doesn't seem to be very helpful, in fact, he doesn't really explain anything to me (he kinda rushes me out of the office so he can take his next patient), I've actually had to take things into my own hands. I made an appt. with an allergist, don't know how much it'll help, but it's worth a try! Does anyone know if immunology (allergy shots) helps? I'm looking for a good ENT who is familiar with Samter's Triad. I called around to several different ENT's (and allergists) in my area and when I mentioned Samter's (Aspirin)Triad they're all like "duh!!!what is that???" I actually had to explain what it is to several of them!I'm becoming very frustrated at this point with doctors being paid so much to know so little! Is it just me? Do I need to take it down a notch?Hi Queen,I understand your frustration. You do need to take things into your own hands. The doctors don’t see enough patients with samters to instinctively know how to handle the situation (other than avoid NSAID’s). I had a ENT who knew about samters and pushed Singulair which didn’t work for me. I had a pulmonoligist who couldn’t help me at all, he seemed to be focused on the fact that I don’t have emphysema, yet. My experience has been to give up on finding a doctor who has a cure and find a doctor who will work for me, listen to me and do some of their own research. Finding a doctor who is willing to spend some time on you is a godsend. I blame the insurance companies for the lack of time and attention because they won’t pay for more than 15 minutes.I have had allergy shots and they don’t make sense to me. I have true allergies but also sensitivities to VOC’s, perfumes, building dust and lots of unexpected things. I feel that I need to improve my immune system and reduce my sensitivity. I know you have heard it before, but the aspirin desensitization has helped me tremendously.Take charge.Pam

__________________________________________________

[Guest guest]

What about desens for Churg-Strauss treatment? Any benefits once chemo starts?

Billie in TexasCarol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

Start your day with - make it your home page

[Guest guest]

Billie: do you mean chemo for CSS? I would still think it would benefit you a lot but I dont; think anyone would do it while undergoing a course of cytoxan for vasculitis. What are your docs proposing for treatment of your CSS? How are you doing and what did the docs say when you told them the diagnosis....nanay nany boo boo? Carol

Re: FRUSTRATED!!!

What about desens for Churg-Strauss treatment? Any benefits once chemo starts?

Billie in TexasCarol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

Start your day with - make it your home page

[Guest guest]

Carol,

The drs (rheumy and pulmonary so far) started Cytoxin @ 100 mg a day, and Bactrim 3 times a week, along with the other meds I was already on. The first goal is to reduce/eliminate prednisone (now at 25 mg). They have ordered various tests (including the A1c). Eoinosiniphils (sp) were normal, prob because of the prednisone, but there was a positive for myeloperoxidase. I have Pulmonary Function Test and heart Ultrasound next Thursday, a Nerve Conduction Test on the 22d, and am in process of scheduling a sleep apnea lab test. #2 diagnosis is diabetes, which we'll try to control with diet for now. If everything else works like it should, the high blood sugar might be reversable (fingers crossed).

I feel the same as I did before the new diagnosis. The dr said I no longer have Samters, since it has now progressed into CSS. Feels the same to me, like the day before your birthday and the day after it. I asume the symptoms and struggles of Samters don't go away, just morph into this new stage called CSS, and use different drugs. Day 4 of the Cytoxin and no side effects so far!

I am this poor dr's first CSS patient, but he's finishing up his fellowship at this teaching hospital next month University of Texas Health Science Center), and has an experienced team of rheumys with him. I think I'm in good hands so far, but as usual, I'll watch them closely and stay close to this group. It's been a great help! He was a bit abashed when I saw him, but I remained gracious and didn't say "I told you so!" By the end of the session, he was relaxed and friendly, and even admiring of my self-diagnosis. I think he just might be trainable!

Billie in TexasCarol <shedokdo@...> wrote:

Billie: do you mean chemo for CSS? I would still think it would benefit you a lot but I dont; think anyone would do it while undergoing a course of cytoxan for vasculitis. What are your docs proposing for treatment of your CSS? How are you doing and what did the docs say when you told them the diagnosis....nanay nany boo boo? Carol

Re: FRUSTRATED!!!

What about desens for Churg-Strauss treatment? Any benefits once chemo starts?

Billie in TexasCarol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

Start your day with - make it your home page __________________________________________________

[Guest guest]

Billie: by the way- I don;t think people just morph from Samter's into CSs- I think they are two separate diseases. Fortunately I had my desens before I was dx with CSS so it was not an issue and I remain on ASA which has been a godsend. Carol

Re: FRUSTRATED!!!

What about desens for Churg-Strauss treatment? Any benefits once chemo starts?

Billie in TexasCarol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

Start your day with - make it your home page

__________________________________________________

[Guest guest]

Thanks, Carol. I'm learning new things every day! I have learned a lot on this list and also on the CSS list.

BillieCarol <shedokdo@...> wrote:

Billie: by the way- I don;t think people just morph from Samter's into CSs- I think they are two separate diseases. Fortunately I had my desens before I was dx with CSS so it was not an issue and I remain on ASA which has been a godsend. Carol

Re: FRUSTRATED!!!

What about desens for Churg-Strauss treatment? Any benefits once chemo starts?

Billie in TexasCarol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

Start your day with - make it your home page

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Billie: Is this the doctor that said you couldn't have CSs because it was too rare? Ha ha If you are the one with it it doesn;t make any difference that it is rare. Carol

Re: FRUSTRATED!!!

What about desens for Churg-Strauss treatment? Any benefits once chemo starts?

Billie in TexasCarol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

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[Guest guest]

You're right.

I did google Scripps and will be calling them and seriously considering it.

Thanx a bunch! :)Carol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

Re: FRUSTRATED!!!

On 8/4/05 6:37 PM, "Queen" <divaqueen127@...> wrote:

Hi!My ENT doesn't seem to be very helpful, in fact, he doesn't really explain anything to me (he kinda rushes me out of the office so he can take his next patient), I've actually had to take things into my own hands. I made an appt. with an allergist, don't know how much it'll help, but it's worth a try! Does anyone know if immunology (allergy shots) helps? I'm looking for a good ENT who is familiar with Samter's Triad. I called around to several different ENT's (and allergists) in my area and when I mentioned Samter's (Aspirin)Triad they're all like "duh!!!what is that???" I actually had to explain what it is to several of them!I'm becoming very frustrated at this point with doctors being paid so much to know so little! Is it just me? Do I need to take it down a notch?Hi

Queen,I understand your frustration. You do need to take things into your own hands. The doctors don’t see enough patients with samters to instinctively know how to handle the situation (other than avoid NSAID’s). I had a ENT who knew about samters and pushed Singulair which didn’t work for me. I had a pulmonoligist who couldn’t help me at all, he seemed to be focused on the fact that I don’t have emphysema, yet. My experience has been to give up on finding a doctor who has a cure and find a doctor who will work for me, listen to me and do some of their own research. Finding a doctor who is willing to spend some time on you is a godsend. I blame the insurance companies for the lack of time and attention because they won’t pay for more than 15 minutes.I have had allergy shots and they don’t make sense to me. I have true allergies but also sensitivities to VOC’s, perfumes, building dust and lots of unexpected things.

I feel that I need to improve my immune system and reduce my sensitivity. I know you have heard it before, but the aspirin desensitization has helped me tremendously.Take charge.Pam

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[Guest guest]

Yes! This is the same doctor who also said it couldn't be CSS because my asthma had improved! Well, duh, 60 mg of prednisone ought to do something, even if it's not cured! This has been such an interesting experience, and we've all gotten a good laugh from it. I even commented tonite that I actually feel better now that the diagnosis has been made. It feels like there is a sort of "containment" and recognition of something being wrong that I have been trying to get recognized for so long! Just getting it labeled/named gives us some control over it.

On a different thread, I have 2 questions....

a classic symptom of CSS is the bump / break-out on the elbows. What causes that? And the blisters, and sores, that occassionally break out at the same site? I've probably had them for about 3-5 years now. The PCP thought at first it was exzema, then psorisis, then he didn't have a clue because nothing helped.

The second question is about the thickening of the skin, and hard places on my legs. It almost seems like hard "plates" under the skin, with swelling and redness. They are quite painful but it helps a bit to massage them. However, it doesn't go away. Does anyone know what that is?

Are these questions and discussions that now more appropriately addressed to the CSS group and listserv?

BillieCarol <shedokdo@...> wrote:

Billie: Is this the doctor that said you couldn't have CSs because it was too rare? Ha ha If you are the one with it it doesn;t make any difference that it is rare. Carol

Re: FRUSTRATED!!!

What about desens for Churg-Strauss treatment? Any benefits once chemo starts?

Billie in TexasCarol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

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[Guest guest]

Billie: I know what you mean about finally getting the diagnosis. It was a huge relief to know what I had. You really can't treat something or address it until you have the diagnosis.I remember feeling very excited when I got the diagnosis strange as that sounds.Then I could move forward an treat it! I guess I am lucky that it is a disease that has treatment. My sister has scleroderma and there is no treatment really for that. Carol

Re: FRUSTRATED!!!

What about desens for Churg-Strauss treatment? Any benefits once chemo starts?

Billie in TexasCarol <shedokdo@...> wrote:

Tamara: sorry about the wrong name. I think your allergist is wrong.This is really a horrible disease and if three or four asa a day after desens can change things 90-100% big deal. Lots of people end up needing asa eventually for heart or arthritis and with desens you can take nsaids for pain or whatever. Then your doc can use allergy shots for your other allergies Samter's is not an allergy although it feels like that. I think you need to get the info from Scripps and strongly consider it. If there is anything like a cure for this- it is ASA desens. Carol

Start your day with - make it your home page

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