Re: Re: working or not working

[Guest guest]

I unfortunately had to leave my job some years ago as I just couldn't concentrate enough due to being very tired all the time as the samters woke me throughout the night. I'm now on a disability pension and still feel tired although these days am at least able to have a 'nanny nap' when it's needed.

samters From: tami111555@...Date: Mon, 10 Jan 2011 18:06:23 -0600Subject: Re: working or not working

Thanks for the responses everyone. I now see that I'm not the only one who doesn't live a "normal" life. Although it saddens me that you all have the same issues, it also helps me understand that my lifestyle isn't a choice, it's a result of years of chronic pain. Becky..if you read this, is your specialist in England (forgot the name) still doing research on Samters?

Here's to an amazing 2011 for all of us suffering with this debilitating disease and to our strength in percervering despite the odds or the pain and sickness.

Sincerely,

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle!

On Sun, Jan 9, 2011 at 9:55 AM, Tami Uelmen Klumpyan <tami111555@...> wrote:

I was just curious. Has Samters caused any of you to quit your full time job and work part time? Or quit altogether? or work from home?

I'm wondering because there is no way I could work a rigid schedule anymore away from home. In fact my social life is pretty much the same...non existant. I don't remember ever seeing a survey on this before. Happy New Year to you all. I sincerely believe 2011 is going to be a great year. I'm pretty much at rock bottom now, so there is no other way to go but up now! I haven't posted in awhile, but I've been reading many of the posts. Looks like a few new members in the last month or so.

Thanks

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle!

[Guest guest]

Hi Tami,

Yes, I'm still here lol!

This is an interesting thread and I too do not have much of a job - I've been studying for 6 years now on a part-time course that takes most people about 3 years to complete...I have nearly finished and when I do I will work part time around caring for my 3 kids...and childminding others. I definately prefer to work/stay at home and am sure this is mainly due to my illness. I haven't seen my Samters specialist for over 6 months now, and while he's doing research on the medical/causative side of Samters, i doubt he's interested in whether we can work or not....

Becky

From: Tami Uelmen Klumpyan <tami111555@...>samters <samters >Sent: Tue, 11 January, 2011 0:06:23Subject: Re: working or not working

Thanks for the responses everyone. I now see that I'm not the only one who doesn't live a "normal" life. Although it saddens me that you all have the same issues, it also helps me understand that my lifestyle isn't a choice, it's a result of years of chronic pain. Becky..if you read this, is your specialist in England (forgot the name) still doing research on Samters?

Here's to an amazing 2011 for all of us suffering with this debilitating disease and to our strength in percervering despite the odds or the pain and sickness.

Sincerely,

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle!

On Sun, Jan 9, 2011 at 9:55 AM, Tami Uelmen Klumpyan <tami111555@...> wrote:

I was just curious. Has Samters caused any of you to quit your full time job and work part time? Or quit altogether? or work from home?

I'm wondering because there is no way I could work a rigid schedule anymore away from home. In fact my social life is pretty much the same...non existant. I don't remember ever seeing a survey on this before. Happy New Year to you all. I sincerely believe 2011 is going to be a great year. I'm pretty much at rock bottom now, so there is no other way to go but up now! I haven't posted in awhile, but I've been reading many of the posts. Looks like a few new members in the last month or so.

Thanks

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle!

[Guest guest]

Hi Becky,

I was just curious if the doc was still working on Samters as a seperate issue from the working or not working issue (I'm good at running separate subjects together! LOL).  In reality, I have not found one doctor that cares whether you are able to work or not work...(with the exception of the pain clinic I go to), as long as you can pay your medical bill. 

Thanks,

Tami 

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle! 

On Tue, Jan 11, 2011 at 1:51 AM, Bannister <beckyb256@...> wrote:

 

Hi Tami,

Yes, I'm still here lol!

This is an interesting thread and I too do not have much of a job - I've been studying for 6 years now on a part-time course that takes most people about 3 years to complete...I have nearly finished and when I do I will work part time around caring for my 3 kids...and childminding others. I definately prefer to work/stay at home and am sure this is mainly due to my illness

.. I haven't seen my Samters specialist for over 6 months now, and while he's doing research on the medical/causative side of Samters, i doubt he's interested in whether we can work or not....

Becky

From: Tami Uelmen Klumpyan <tami111555@...>samters <samters >

Sent: Tue, 11 January, 2011 0:06:23 Subject: Re: working or not working 

Thanks for the responses everyone.  I now see that I'm not the only one who doesn't live a " normal " life.  Although it saddens me that you all have the same issues, it also helps me understand that my lifestyle isn't a choice, it's a result of years of chronic pain.  Becky..if you read this, is your specialist in England (forgot the name) still doing research on Samters? 

Here's to an amazing 2011 for all of us suffering with this debilitating disease and to our strength in percervering despite the odds or the pain and sickness.

Sincerely,

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle! 

On Sun, Jan 9, 2011 at 9:55 AM, Tami Uelmen Klumpyan <tami111555@...> wrote:

I was just curious.  Has Samters caused any of you to quit your full time job and work part time?  Or quit altogether?  or work from home? 

I'm wondering because there is no way I could work a rigid schedule anymore away from home.  In fact my social life is pretty much the same...non existant.   I don't remember ever seeing a survey on this before.  Happy New Year to you all.  I sincerely believe 2011 is going to be a great year.  I'm pretty much at rock bottom now, so there is no other way to go but up now! I haven't posted in awhile, but I've been reading many of the posts.  Looks like a few new members in the last month or so.

Thanks

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle! 

[Guest guest]

Hi Becky

After 4 false starts I finally underwent desense (liquid aspirin directly into the nose) via Dr Scadding at Royal Free in London late last year. So far so good and I seem to remain less congested though surprise surprise I am fighting an infection at the mo, but at least I seem to be holding my own rather than needing a course of steriods to get out of the downward spiral. The main benefit I am getting is improved sleep patterns and I am now on a 75mg per day liquid dose so hopefully not too much of the high digested dose side effects some others encounter.

I understand your specialist, Dr Nassar of Cambridge, is in the same research group as Dr Scadding and they are doing research of a more genetic nature. I have joined the research sample and I was told they needed only a handful more to make up the 200 subjects and they had the extra ones lined up already.

Holding down a full time job with Samters is no mean feat, I agree. I commute into London so those journeys in a stuffy (or even air con'd) carraige are about the last thing I need! At least my employer as been pretty understanding and I did a lot of work from home as the aspirin challenge progressed.

It is a very debilitating condition and one thing that annoys me is when I struggle into work having had to have one of those major clear outs we are all too familiar with in the morning, only to have a colleague say "you look really well today" when inside I feel like death warmed up!

Oh the joys of living with Samters!

Best wishes

Mike

samters From: beckyb256@...Date: Tue, 11 Jan 2011 07:51:45 +0000Subject: Re: Re: working or not working

Hi Tami,

Yes, I'm still here lol!

This is an interesting thread and I too do not have much of a job - I've been studying for 6 years now on a part-time course that takes most people about 3 years to complete...I have nearly finished and when I do I will work part time around caring for my 3 kids...and childminding others. I definately prefer to work/stay at home and am sure this is mainly due to my illness. I haven't seen my Samters specialist for over 6 months now, and while he's doing research on the medical/causative side of Samters, i doubt he's interested in whether we can work or not....

Becky

From: Tami Uelmen Klumpyan <tami111555@...>samters <samters >Sent: Tue, 11 January, 2011 0:06:23Subject: Re: working or not working

Thanks for the responses everyone. I now see that I'm not the only one who doesn't live a "normal" life. Although it saddens me that you all have the same issues, it also helps me understand that my lifestyle isn't a choice, it's a result of years of chronic pain. Becky..if you read this, is your specialist in England (forgot the name) still doing research on Samters?

Here's to an amazing 2011 for all of us suffering with this debilitating disease and to our strength in percervering despite the odds or the pain and sickness.

Sincerely,

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle!

On Sun, Jan 9, 2011 at 9:55 AM, Tami Uelmen Klumpyan <tami111555@...> wrote:

I was just curious. Has Samters caused any of you to quit your full time job and work part time? Or quit altogether? or work from home?

I'm wondering because there is no way I could work a rigid schedule anymore away from home. In fact my social life is pretty much the same...non existant. I don't remember ever seeing a survey on this before. Happy New Year to you all. I sincerely believe 2011 is going to be a great year. I'm pretty much at rock bottom now, so there is no other way to go but up now! I haven't posted in awhile, but I've been reading many of the posts. Looks like a few new members in the last month or so.

Thanks

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle!

[Guest guest]

Tami:Looked at your website - seems like you do PLENTY. Farm, store, author ... lots of healthy people have less on their plate.As for my answer to the original question - I work, a little more than "full time" as an attorney. I DO have days where I can't make it into the office. But work from home when I have to. I do believe that I had no other choice than to work for myself as my health DOES often create situations where I am unable to make it to my office - that an employer might not understand or stand for.Case in point, for the past few weeks I have had a brutal cough that is gets so bad that it actually causes me to black out, making it unsafe to drive. I manage to get by and my wife is kind and available enough to drive me to the office. Yesterday, I had a hearing about an hour away and imposed on my client to drive us there.Things - as far as my physical condition and general health - have returned to bad since I gave up on ASA but since it almost killed me, there was no choice. I remain hopeful that my stomach and esophagus will return to good enough condition by this summer so that I can go back on the ASA.In sum, I get by. There are bad days - when the asthma or allergies make it hard to leave the sofa. However, in most cases, I manage to pull on my big boy pants and drag myself to the office.On Jan 12, 2011, at 10:05 PM, Tami Uelmen Klumpyan wrote:

Thanks everyone for all of your responses. I hope you all don't mind, but I showed your responses to my husband so he would know that I am not the only one who can't work full time. Hmmm He's been nice to me for a few days now. I love little miracles. LOL

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle!

On Sun, Jan 9, 2011 at 9:55 AM, Tami Uelmen Klumpyan <tami111555@...> wrote:

I was just curious. Has Samters caused any of you to quit your full time job and work part time? Or quit altogether? or work from home?

I'm wondering because there is no way I could work a rigid schedule anymore away from home. In fact my social life is pretty much the same...non existant. I don't remember ever seeing a survey on this before. Happy New Year to you all. I sincerely believe 2011 is going to be a great year. I'm pretty much at rock bottom now, so there is no other way to go but up now! I haven't posted in awhile, but I've been reading many of the posts. Looks like a few new members in the last month or so.

Thanks

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle!

[Guest guest]

Hi,

Actually I'm not the author, that is my twin sister Terri.  I do write music sing and record though:)  Yes it does look impressive but all of it is done at home in between bad moments and all was started because of my illness.  I learned to make jewelry from bed along with many other things too.  Although my farm name is Tami's Berry Farm...it is a family business of sorts.  Most of my family lives down the road and the others come and help.  I'm very fortunate that my family didn't mind being sucked into my businesses!  So everything really revolves around my health.  I actually started the farm because I felt worse in winters than summer and I was having surgery every two years in the winter months too.  I, like you, would have a hard time keeping a scheduled work week.  That's why going out and getting a " real " job causes so much stress.  I worked full time for three years when the onset of symptoms hit me like a brick.  I was so sick everyday.  I'd eat all day long to offset the nausea from the pressure headaches and have to lay on the floor in my office frequently.  I was cursing the person who invented money last night as money seems to be the root of all bad things.  I'd be good just popping a tent and living in it for the rest of my days:)  But thanks to the idiot who sprayed chemicals in high winds three years ago and wiped out my farm, I am now in financial ruin and have no choices.  I'm sure being a lawyer you understand how expensive it is to take a case like this to trial.

I was wondering...do you have an extra pair of big boy pants I could borrow?

Tami 

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle! 

On Thu, Jan 13, 2011 at 8:32 AM, iesInBoca@... <scottiesinboca@...> wrote:

 

Tami:

Looked at your website - seems like you do PLENTY.  Farm, store, author ...  lots of healthy people have less on their plate.

As for my answer to the original question - I work, a little more than " full time " as an attorney.  I DO have days where I can't make it into the office.  But work from home when I have to.  I do believe that I had no other choice than to work for myself as my health DOES often create situations where I am unable to make it to my office - that an employer might not understand or stand for.

Case in point, for the past few weeks I have had a brutal cough that is gets so bad that it actually causes me to black out, making it unsafe to drive.  I manage to get by and my wife is kind and available enough to drive me to the office.  Yesterday, I had a hearing about an hour away and imposed on my client to drive us there.

Things - as far as my physical condition and general health - have returned to bad since I gave up on ASA but since it almost killed me, there was no choice.  I remain hopeful that my stomach and esophagus will return to good enough condition by this summer so that I can go back on the ASA.

In sum, I get by.  There are bad days - when the asthma or allergies make it hard to leave the sofa.  However, in most cases, I manage to pull on my big boy pants and drag myself to the office.

On Jan 12, 2011, at 10:05 PM, Tami Uelmen Klumpyan wrote:

 

Thanks everyone for all of your responses.  I hope you all don't mind, but I showed your responses to my husband so he would know that I am not the only one who can't work full time.  Hmmm He's been nice to me for a few days now.  I love little miracles.  LOL

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle! 

On Sun, Jan 9, 2011 at 9:55 AM, Tami Uelmen Klumpyan <tami111555@...> wrote:

I was just curious.  Has Samters caused any of you to quit your full time job and work part time?  Or quit altogether?  or work from home? 

I'm wondering because there is no way I could work a rigid schedule anymore away from home.  In fact my social life is pretty much the same...non existant.   I don't remember ever seeing a survey on this before.  Happy New Year to you all.  I sincerely believe 2011 is going to be a great year.  I'm pretty much at rock bottom now, so there is no other way to go but up now! I haven't posted in awhile, but I've been reading many of the posts.  Looks like a few new members in the last month or so.

Thanks

Tami

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle! 

[Guest guest]

Hi Nova,

I think after reading posts also that many of us either work very sick or live poorly and not work.

I am on Fentenyl patch (narcotic) which helps greatly but don't feel comfortable driving as the day wears on.  So over the last two weeks I went off the patch and remembered how incredibly bad I felt before finally going on narcotics.  I was in bed most of the time as the pressure in my head was maddening.  After nine months of having that numbed with meds, I was no longer use to it.  I just wanted to take a drill and put holes thoughout my head. 

Do not feel guilty for taking the time off.  They may not like you being off, but you need to care for you first.  I will warn you that it will be hard to go back.  You will find it amazing that you worked feeling sick all the time.  That's where I am.  I spent three years working full time with pressure headaches daily.  My day was comprised of eating every hour to ward off the nausea, spending quite a bit of time rolling on the floor to try and drain my sinuses to relieve a little pressure.  I wish the best of luck to you Nova, and I hope your two month leave is just what is needed to go at it again.

Sincerely,

Tami 

True Ark CreationsTami's Berry Farmwww.truearkcreations.comEveryday holds a possibility of a miracle! 

On Wed, Jan 26, 2011 at 8:37 AM, Nova Lance-Seghi <novalanceseghi@...> wrote:

 

Hello all!  I'm new to the group and have found immense comfort in reading everyone's posts and, for the first time, do not feel alone.  My doctor recently put me on a 2 month medical leave due to sheer exhaustion in trying to keep a normal work schedule.  My employer is respecting the leave, but there is some tension I feel, as it seems they do not understand medical leave for something other than surgery, the birth of a child, etc.  I

I just started on Zyflo this week and am going in for desensitization tomorrow so am hopeful...

Nova

[Guest guest]

I can relate! Samters can wear you downI'm actually in hospital for asthma troubles this week worse than everFirst time admitted for asthmaSent formed my iPhoneOn Jan 25, 2011, at 10:28 PM, "" <kdcurlywurly@...> wrote:

Hi

I work full time and it is soooo difficult for me to keep down a full time job and have Samters. I do not sleep well (hence I am posting this at 4am!). I had two polypectomys last year (march and october ) my 4th and 5th operation and am now suffering a sinus and ear infection. My employers have already expressed that I have had too much time off in the last year (7 wks in total)so I am going into work although I should really be resting. There is alot of pressure on me to carry on regardless but sometimes I find it very difficult!

>

> I was just curious. Has Samters caused any of you to quit your full time

> job and work part time? Or quit altogether? or work from home?

> I'm wondering because there is no way I could work a rigid schedule anymore

> away from home. In fact my social life is pretty much the same...non

> existant. I don't remember ever seeing a survey on this before. Happy New

> Year to you all. I sincerely believe 2011 is going to be a great year. I'm

> pretty much at rock bottom now, so there is no other way to go but up now! I

> haven't posted in awhile, but I've been reading many of the posts. Looks

> like a few new members in the last month or so.

> Thanks

> Tami

> True Ark Creations

> Tami's Berry Farm

> www.truearkcreations.com

> Everyday holds a possibility of a miracle!

>

[Guest guest]

I agree 2nd dr that says I dont need to worry about what I'm eating Its only the salicilates from bark of tree that will mess me upI am getting frustrated that things are only going to get worseNot to be pessimist but that's what it feels likeEvery year is worseThanks for your messgeSent from my iPhoneOn Jan 29, 2011, at 11:20 AM, "" <kdcurlywurly@...> wrote:

Sorry to hear you are in hospital. I hope you are back home soon.

I don't know about other peoples experiences with the medical profession but they just don't seem to understand how this condition lowers quality of life!

> > >

> > > I was just curious. Has Samters caused any of you to quit your full time

> > > job and work part time? Or quit altogether? or work from home?

> > > I'm wondering because there is no way I could work a rigid schedule anymore

> > > away from home. In fact my social life is pretty much the same...non

> > > existant. I don't remember ever seeing a survey on this before. Happy New

> > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm

> > > pretty much at rock bottom now, so there is no other way to go but up now! I

> > > haven't posted in awhile, but I've been reading many of the posts. Looks

> > > like a few new members in the last month or so.

> > > Thanks

> > > Tami

> > > True Ark Creations

> > > Tami's Berry Farm

> > > www.truearkcreations.com

> > > Everyday holds a possibility of a miracle!

> > >

> >

> >

>

[Guest guest]

Hi

Judging by your email address you are in UK. Have you been referred to say Dr Scadding at Royal Free in London or Dr Nasser at Addenbrookes in Cambridge? Have you tried desense? It took me a long time to get there but I was finally desensed at Royal Free just before Christmas and I am convinced it has helped. The nasty stuff now stays on the move so I keep much clearer than I did and I don't wake in the early hours with a head that feels so blocked up and heavy. 6 hours continuous sleep is so much better than 3 or 4 at best as was the case for me before desense. I don't have any sense of smell back as yet but then I have had an infection about me for most of the time since the desense, but at least this time I have not yet had to resort to steroids or antibiotics.

The Royal Free desense programme is with liquid aspirin dropped into my nose so I am on a dose of only 75mg each day rather than the much higher doses many in this group are taking by mouth.

I know what you mean about trying to keep going with work though. It is not only a debilitating condition but is also an embarrassment to keep blowing your nose and not being able to join in with an alchoholic drink and watching your diet carefully too.

Best wishes

Mike

samters From: kdcurlywurly@...Date: Sat, 29 Jan 2011 17:20:57 +0000Subject: Re: working or not working

Sorry to hear you are in hospital. I hope you are back home soon.I don't know about other peoples experiences with the medical profession but they just don't seem to understand how this condition lowers quality of life!> > >> > > I was just curious. Has Samters caused any of you to quit your full time> > > job and work part time? Or quit altogether? or work from home?> > > I'm wondering because there is no way I could work a rigid schedule anymore> > > away from home. In fact my social life is pretty much the same...non> > > existant. I don't remember ever seeing a survey on this before. Happy New> > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > like a few new members in the last month or so.> > > Thanks> > > Tami> > > True Ark Creations> > > Tami's Berry Farm> > > www.truearkcreations.com> > > Everyday holds a possibility of a miracle!> > >> > > >>

[Guest guest]

I do agree the quality of life with this disease is not understood by most of the doctors that I've seen. and not to mention I feel whiney......after having this for over 6 years however my family is much more understanding about how miserable I feel when I have a reaction. I call it a reaction but it's really like a flare up. It comes and goes.....it's the weirdest thing. anyone experience these flare ups of symptoms? It takes a good 4-5 days to get back into feeling like my head isn't going to explode. My cocktail so far in curbing this has been aspirin desensitization (take 3 - 325mg aspirins per day)one singular at night before bedand 2 - 12 hour Clairitin D'sit works for the most part unless I miss one of my meds for the day - and God forbid I need medication for anything else......i worry my kidneys are

in overdrive with the meds. Bianca

Sorry to hear you are in hospital. I hope you are back home soon.

I don't know about other peoples experiences with the medical profession but they just don't seem to understand how this condition lowers quality of life!

> > >

> > > I was just curious. Has Samters caused any of you to quit your full time

> > > job and work part time? Or quit altogether? or work from home?

> > > I'm wondering because there is no way I could work a rigid schedule anymore

> > > away from home. In fact my social life is pretty much the same...non

> > > existant. I don't remember ever seeing a survey on this before. Happy New

> > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm

> > > pretty much at rock bottom now, so there is no other way to go but up now! I

> > > haven't posted in awhile, but I've been reading many of the posts. Looks

> > > like a few new members in the last month or so.

> > > Thanks

> > > Tami

> > > True Ark Creations

> > > Tami's Berry Farm

> > > www.truearkcreations.com

> > > Everyday holds a possibility of a miracle!

> > >

> >

> >

>

[Guest guest]

I'm having a serious asthma flare up3 days in hospital so farFound another med I'm allergic toLevequinNot having a fun time with thisSent from my iPhoneOn Jan 29, 2011, at 3:38 PM, Bianca F <bianca_f75@...> wrote:

I do agree the quality of life with this disease is not understood by most of the doctors that I've seen. and not to mention I feel whiney......after having this for over 6 years however my family is much more understanding about how miserable I feel when I have a reaction. I call it a reaction but it's really like a flare up. It comes and goes.....it's the weirdest thing. anyone experience these flare ups of symptoms? It takes a good 4-5 days to get back into feeling like my head isn't going to explode. My cocktail so far in curbing this has been aspirin desensitization (take 3 - 325mg aspirins per day)one singular at night before bedand 2 - 12 hour Clairitin D'sit works for the most part unless I miss one of my meds for the day - and God forbid I need medication for anything else......i worry my kidneys are

in overdrive with the meds. Bianca

Sorry to hear you are in hospital. I hope you are back home soon.

I don't know about other peoples experiences with the medical profession but they just don't seem to understand how this condition lowers quality of life!

> > >

> > > I was just curious. Has Samters caused any of you to quit your full time

> > > job and work part time? Or quit altogether? or work from home?

> > > I'm wondering because there is no way I could work a rigid schedule anymore

> > > away from home. In fact my social life is pretty much the same...non

> > > existant. I don't remember ever seeing a survey on this before. Happy New

> > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm

> > > pretty much at rock bottom now, so there is no other way to go but up now! I

> > > haven't posted in awhile, but I've been reading many of the posts. Looks

> > > like a few new members in the last month or so.

> > > Thanks

> > > Tami

> > > True Ark Creations

> > > Tami's Berry Farm

> > > www.truearkcreations.com

> > > Everyday holds a possibility of a miracle!

> > >

> >

> >

>

[Guest guest]

So sorry to hear about your hospitalization - I was also found to be allergic to Levaquin which I guess has a derivative of penicillin. So basically you're allergic to penicillin! Never had this issue until after samters onset and it only came about 4 years after I was diagnosed. Bianca

Sorry to hear you are in hospital. I hope you are back home soon.

I don't know about other peoples experiences with the medical profession but they just don't seem to understand how this condition lowers quality of life!

> > >

> > > I was just curious. Has Samters caused any of you to quit your full time

> > > job and work part time? Or quit altogether? or work from home?

> > > I'm wondering because there is no way I could work a rigid schedule anymore

> > > away from home. In fact my social life is pretty much the same...non

> > > existant. I don't remember ever seeing a survey on this before. Happy New

> > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm

> > > pretty much at rock bottom now, so there is no other way to go but up now! I

> > > haven't posted in awhile, but I've been reading many of the posts. Looks

> > > like a few new members in the last month or so.

> > > Thanks

> > > Tami

> > > True Ark Creations

> > > Tami's Berry Farm

> > > www.truearkcreations.com

> > > Everyday holds a possibility of a miracle!

> > >

> >

> >

>

[Guest guest]

I'm allergic to penicillin as well. I wonder how common that is with sampters?Sent from my iPhoneOn Jan 30, 2011, at 1:25 PM, Bianca F <bianca_f75@...> wrote:

So sorry to hear about your hospitalization - I was also found to be allergic to Levaquin which I guess has a derivative of penicillin. So basically you're allergic to penicillin! Never had this issue until after samters onset and it only came about 4 years after I was diagnosed. Bianca

Sorry to hear you are in hospital. I hope you are back home soon.

I don't know about other peoples experiences with the medical profession but they just don't seem to understand how this condition lowers quality of life!

> > >

> > > I was just curious. Has Samters caused any of you to quit your full time

> > > job and work part time? Or quit altogether? or work from home?

> > > I'm wondering because there is no way I could work a rigid schedule anymore

> > > away from home. In fact my social life is pretty much the same...non

> > > existant. I don't remember ever seeing a survey on this before. Happy New

> > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm

> > > pretty much at rock bottom now, so there is no other way to go but up now! I

> > > haven't posted in awhile, but I've been reading many of the posts. Looks

> > > like a few new members in the last month or so.

> > > Thanks

> > > Tami

> > > True Ark Creations

> > > Tami's Berry Farm

> > > www.truearkcreations.com

> > > Everyday holds a possibility of a miracle!

> > >

> >

> >

>

[Guest guest]

I'm allergic to penicillin, though not levaquin.Sent from my T-Mobile myTouch 3G Slide----- Reply message -----From: " Lincicum " <j_lincicum@...>Date: Sun, Jan 30, 2011 1:36 pmSubject: Re: working or not working " samters " <samters >I'm allergic to penicillin as well. I wonder how common that is with sampters?Sent from my iPhoneOn Jan 30, 2011, at 1:25 PM, Bianca F <bianca_f75@...> wrote:> So sorry to hear about your hospitalization - I was also found to be allergic to Levaquin which I guess has a derivative of penicillin. So basically you're allergic to penicillin! > > Never had this issue until after samters onset and it only came about 4 years after I was diagnosed. > > > Bianca > > >> >>> >>> Sorry to hear you are in hospital. I hope you are back home soon.>>> >>> I don't know about other peoples experiences with the medical profession but they just don't seem to understand how this condition lowers quality of life!>>> >>> >>> >>> >>> > > >>>> > > > I was just curious. Has Samters caused any of you to quit your full time>>> > > > job and work part time? Or quit altogether? or work from home?>>> > > > I'm wondering because there is no way I could work a rigid schedule anymore>>> > > > away from home. In fact my social life is pretty much the same...non>>> > > > existant. I don't remember ever seeing a survey on this before. Happy New>>> > > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm>>> > > > pretty much at rock bottom now, so there is no other way to go but up now! I>>> > > > haven't posted in awhile, but I've been reading many of the posts.. Looks>>> > > > like a few new members in the last month or so.>>> > > > Thanks>>> > > > Tami>>> > > > True Ark Creations>>> > > > Tami's Berry Farm>>> > > > www.truearkcreations.com>>> > > > Everyday holds a possibility of a miracle!>>> > > >>>> > > >>> > >>>> >>>> >> > >

[Guest guest]

Thank you biancaSent from my iPhoneOn Jan 30, 2011, at 1:47 PM, ramoschristina1@... <ramoschristina1@...> wrote:

I'm allergic to penicillin, though not levaquin.Sent from my T-Mobile myTouch 3G Slide----- Reply message -----From: " Lincicum" <j_lincicum@...>Date: Sun, Jan 30, 2011 1:36 pmSubject: Re: working or not working"samters " <samters >I'm allergic to penicillin as well. I wonder how common that is with sampters?Sent from my iPhoneOn Jan 30, 2011, at 1:25 PM, Bianca F <bianca_f75@...> wrote:> So sorry to hear about your hospitalization - I was also found to be allergic to Levaquin which I guess has a derivative of penicillin. So basically you're allergic to penicillin! > > Never had this issue until after samters onset and it only came about 4 years after I was diagnosed. > > > Bianca > > >> >>> >>> Sorry to hear you are in hospital. I hope you are back home soon.>>> >>> I don't know about other peoples experiences with the medical profession but they just don't seem to understand how this condition lowers quality of life!>>> >>> >>> >>> >>> > > >>>> > > > I was just curious. Has Samters caused any of you to quit your full time>>> > > > job and work part time? Or quit altogether? or work from home?>>> > > > I'm wondering because there is no way I could work a rigid schedule anymore>>> > > > away from home. In fact my social life is pretty much the same...non>>> > > > existant. I don't remember ever seeing a survey on this before. Happy New>>> > > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm>>> > > > pretty much at rock bottom now, so there is no other way to go but up now! I>>> > > > haven't posted in awhile, but I've been reading many of the posts.. Looks>>> > > > like a few new members in the last month or so.>>> > > > Thanks>>> > > > Tami>>> > > > True Ark Creations>>> > > > Tami's Berry Farm>>> > > > www.truearkcreations.com>>> > > > Everyday holds a possibility of a miracle!>>> > > >>>> > > >>> > >>>> >>>> >> > >

[Guest guest]

Hi ,

Your ENT probably won't be in th slightest bit interested in your immune system, but believe me this is where our illness starts. I know Cambridge and London do desens - I also think Cardiff does too. Whereabouts in the UK do you live? I live near Bristol, yet my Immunologist (Dr Nasser) is in Cambridge and I see him about twice/year now. He's an expert on Samters and is happy to see anyone from anywhere with this illness. He's also doing research on it so would probably like your blood sample to test it! I feel much happier now I have an Immunologist as well as an ENT, and have ben desen for 3 years now which has been very beneficial.

Becky

From: <kdcurlywurly@...>samters Sent: Mon, 31 January, 2011 19:09:53Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards> > > >> > > > I was just curious. Has Samters caused any of you to quit your full time> > > > job and work part time? Or quit altogether? or work from home?> > > > I'm wondering because there is no way I could work a rigid schedule anymore> > > > away from home. In fact my social life is pretty much the same...non> > > > existant. I don't remember ever seeing a survey on this before. Happy New> >

> > Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > > like a few new members in the last month or so.> > > > Thanks> > > > Tami> > > > True Ark Creations> > > > Tami's Berry Farm> > > > www.truearkcreations.com> > > > Everyday holds a possibility of a miracle!> > > >> > > > > >> >>

[Guest guest]

Thank you everyoneI'm still in hospital but feel like I'm turning the corner I'm thinking I might just have to visit that dr in/at Cambridge !Sent from my iPhoneOn Jan 31, 2011, at 1:30 PM, Bannister <beckyb256@...> wrote:

Hi ,

Your ENT probably won't be in th slightest bit interested in your immune system, but believe me this is where our illness starts. I know Cambridge and London do desens - I also think Cardiff does too. Whereabouts in the UK do you live? I live near Bristol, yet my Immunologist (Dr Nasser) is in Cambridge and I see him about twice/year now. He's an expert on Samters and is happy to see anyone from anywhere with this illness. He's also doing research on it so would probably like your blood sample to test it! I feel much happier now I have an Immunologist as well as an ENT, and have ben desen for 3 years now which has been very beneficial.

Becky

From: <kdcurlywurly@...>samters Sent: Mon, 31 January, 2011 19:09:53Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards> > > >> > > > I was just curious. Has Samters caused any of you to quit your full time> > > > job and work part time? Or quit altogether? or work from home?> > > > I'm wondering because there is no way I could work a rigid schedule anymore> > > > away from home. In fact my social life is pretty much the same...non> > > > existant. I don't remember ever seeing a survey on this before. Happy New> >

> > Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > > like a few new members in the last month or so.> > > > Thanks> > > > Tami> > > > True Ark Creations> > > > Tami's Berry Farm> > > > www.truearkcreations.com> > > > Everyday holds a possibility of a miracle!> > > >> > > > > >> >>

[Guest guest]

Hi

As has said desense is very likely to help you - about 70% success rate by all accounts. It should slow down polyp regrowth and also help relieve the congestion and asthma symptoms. I have found that I am not half so blocked up as I was, especially as occured during the night.

You will need to get your GP to refer you and it took a while for me to get the Primary Health Care Trust to agree the referral. I think I was helped by the fact that both my GP and a specialist's sidekick at the Ipswich hospital where I had a polypectomy had trained at the Royal National ENT hospital in London where Dr Scadding is based (very close to Kings Cross / St Pancreas Station). You can see her privately if it comes to that. Contact Darby on

020 7915 1674 to get an appointment as she manages all the NHS and private appointments.

I think that about 30 or 40 years ago there were some desense programmes carried out under less than perfect supervision in the UK and several patients died so here in the UK it has been frowned upon for a long time. That possibly explains your ENT's attitude. Addenbrookes have been doing some research on desense for those with peanut allergy as well as aspirin. Dr Scadding & Dr Nassar are working on a joint research programme looking for gentic link and I have joined that as I believe has .

Your surgeon is letting you down and is taking the only approach he knows - using something in his surgeons toolbox.

Side effects - difficut to say as it is early days for me. What I have found is that the nasty green stuff has been much easier to keep moving and out. As that movement started I had an ear infection and badly blocked up ears and associated deafness. That took about 3 weeks to sort itself out with a bit of aid from prescribed ear drops and over the counter ear wax solution. During that time I had some orchestral tinnitus sessions but that has now subsided pretty much thankfully. I currently have a chesty cough but again the nasty stuff is on the move and compared with pre desense times is much easier to manage. I hope that once the chesty cough clears up I could be in for a good run - you have to stay optimistic when you have Samters.........

Hope that helps you - let me know how you get on

Best wishes

Mike

samters From: kdcurlywurly@...Date: Mon, 31 Jan 2011 19:09:53 +0000Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards> > > >> > > > I was just curious. Has Samters caused any of you to quit your full time> > > > job and work part time? Or quit altogether? or work from home?> > > > I'm wondering because there is no way I could work a rigid schedule anymore> > > > away from home. In fact my social life is pretty much the same...non> > > > existant. I don't remember ever seeing a survey on this before. Happy New> > > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > > like a few new members in the last month or so.> > > > Thanks> > > > Tami> > > > True Ark Creations> > > > Tami's Berry Farm> > > > www.truearkcreations.com> > > > Everyday holds a possibility of a miracle!> > > >> > > > > >> >>

[Guest guest]

Hi Mike, yes I am part of the research programme - well, I donated my blood anyway :-)

I used to get dreadful chest infections that lasted literally months, about twice a year, but have not had 1 bad chest infection since - I'e had one mild chest infection in 3 years!! My sinuses are still infected, and I have no sense of smell...BUT I have been able to breathe through my nose day and night easily since desense, and have had just one sinus op to open frontals. Desens definatley has helped. I am currently desens to aspirin as I'm awaiting an operation (this Friday and not Samters-related) and I feel quite unprotected...can't wait to get desens again.

Becky

From: Mike Hammond <rovenmike@...>Samters Group <samters >Sent: Mon, 31 January, 2011 22:43:48Subject: RE: Re: working or not working

Hi As has said desense is very likely to help you - about 70% success rate by all accounts. It should slow down polyp regrowth and also help relieve the congestion and asthma symptoms. I have found that I am not half so blocked up as I was, especially as occured during the night. You will need to get your GP to refer you and it took a while for me to get the Primary Health Care Trust to agree the referral. I think I was helped by the fact that both my GP and a specialist's sidekick at the Ipswich hospital where I had a polypectomy had trained at the Royal National ENT hospital in London where Dr Scadding is based (very close to Kings Cross / St Pancreas Station). You can see her privately if it comes to that. Contact Darby on 020 7915 1674 to get an appointment as she manages all the NHS and private appointments. I think that

about 30 or 40 years ago there were some desense programmes carried out under less than perfect supervision in the UK and several patients died so here in the UK it has been frowned upon for a long time. That possibly explains your ENT's attitude. Addenbrookes have been doing some research on desense for those with peanut allergy as well as aspirin. Dr Scadding & Dr Nassar are working on a joint research programme looking for gentic link and I have joined that as I believe has .Your surgeon is letting you down and is taking the only approach he knows - using something in his surgeons toolbox. Side effects - difficut to say as it is early days for me. What I have found is that the nasty green stuff has been much easier to keep moving and out. As that movement started I had an ear infection and badly blocked up ears and associated deafness. That took about 3 weeks to sort itself

out with a bit of aid from prescribed ear drops and over the counter ear wax solution. During that time I had some orchestral tinnitus sessions but that has now subsided pretty much thankfully. I currently have a chesty cough but again the nasty stuff is on the move and compared with pre desense times is much easier to manage. I hope that once the chesty cough clears up I could be in for a good run - you have to stay optimistic when you have Samters......... Hope that helps you - let me know how you get on Best wishes Mike

samters From: kdcurlywurly@...Date: Mon, 31 Jan 2011 19:09:53 +0000Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards> > > >> > > > I was just curious. Has Samters caused any of you to quit your full time> > > > job and work part time? Or quit altogether? or work from home?> > > > I'm wondering because there is no way I could work a rigid schedule anymore> > > > away from home. In fact my social life is pretty much the same...non> > > > existant. I don't remember ever seeing a survey on this before. Happy New> > > >

Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > > like a few new members in the last month or so.> > > > Thanks> > > > Tami> > > > True Ark Creations> > > > Tami's Berry Farm> > > > www.truearkcreations.com> > > > Everyday holds a possibility of a miracle!> > > >> > > > > >> >>

[Guest guest]

Good luck and I hope your health improves.

Becky

From: "aio_cps@..." <aio_cps@...>"samters " <samters >Cc: "samters " <samters >Sent: Mon, 31 January, 2011 22:42:22Subject: Re: Re: working or not working

Thank you everyone

I'm still in hospital but feel like I'm turning the corner

I'm thinking I might just have to visit that dr in/at Cambridge !Sent from my iPhone

On Jan 31, 2011, at 1:30 PM, Bannister <beckyb256@...> wrote:

Hi ,

Your ENT probably won't be in th slightest bit interested in your immune system, but believe me this is where our illness starts. I know Cambridge and London do desens - I also think Cardiff does too. Whereabouts in the UK do you live? I live near Bristol, yet my Immunologist (Dr Nasser) is in Cambridge and I see him about twice/year now. He's an expert on Samters and is happy to see anyone from anywhere with this illness. He's also doing research on it so would probably like your blood sample to test it! I feel much happier now I have an Immunologist as well as an ENT, and have ben desen for 3 years now which has been very beneficial.

Becky

From: <kdcurlywurly@...>samters Sent: Mon, 31 January, 2011 19:09:53Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards> > > >> > > > I was just curious. Has Samters caused any of you to quit your full time> > > > job and work part time? Or quit altogether? or work from home?> > > > I'm wondering because there is no way I could work a rigid schedule anymore> > > > away from home. In fact my social life is pretty much the same...non> > > > existant. I don't remember ever seeing a survey on this before. Happy New> > > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > > like a few new members in the last month or so.> > > > Thanks> > > > Tami> > > >

True Ark Creations> > > > Tami's Berry Farm> > > > www.truearkcreations.com> > > > Everyday holds a possibility of a miracle!> > > >> > > > > >> >>

[Guest guest]

Hi Becky &

When I joined the genetic research programme in December there were only about another half dozen participant places left for Dr Scadding's list and I understand they had the remaining subjects all lined up for the early part of this year (200 in all). Yes I gave blood too - about 9 vials - I nearly had an empty arm! (Tony Hancock sketch for those, like me, old enough to remember)

One thing may wish to consider is that Dr Scadding approaches desense with liquid aspirin dropped straight into the nose and I am having to take a 75mg daily dose that way to keep through the tolerence threshold. I think Dr Nassar uses an oral aspirin approach so then a much higher dose has to be ingested and that in itself has other potential side effects.

Good luck with the operation Becky and I hope all goes well. Do you manage the escalation of your aspirin dose post surgery yourself or do you have to have this supervised? I was told by Dr Scadding's team that if I miss a daily dose of aspirin I need to contact them to discuss how I restart? When I started the desense programme it was with just 10mg as the very first dose.

By the way I live in South Suffolk but work in London (when I am well enough). I think there are about 15 Brits in this group so we are a bit of a rare breed, perhaps that makes us special..........

Best wishes

Mike

samters From: beckyb256@...Date: Tue, 1 Feb 2011 07:32:40 +0000Subject: Re: Re: working or not working

Hi Mike, yes I am part of the research programme - well, I donated my blood anyway :-)

I used to get dreadful chest infections that lasted literally months, about twice a year, but have not had 1 bad chest infection since - I'e had one mild chest infection in 3 years!! My sinuses are still infected, and I have no sense of smell...BUT I have been able to breathe through my nose day and night easily since desense, and have had just one sinus op to open frontals. Desens definatley has helped. I am currently desens to aspirin as I'm awaiting an operation (this Friday and not Samters-related) and I feel quite unprotected...can't wait to get desens again.

Becky

From: Mike Hammond <rovenmike@...>Samters Group <samters >Sent: Mon, 31 January, 2011 22:43:48Subject: RE: Re: working or not working

Hi As has said desense is very likely to help you - about 70% success rate by all accounts. It should slow down polyp regrowth and also help relieve the congestion and asthma symptoms. I have found that I am not half so blocked up as I was, especially as occured during the night. You will need to get your GP to refer you and it took a while for me to get the Primary Health Care Trust to agree the referral. I think I was helped by the fact that both my GP and a specialist's sidekick at the Ipswich hospital where I had a polypectomy had trained at the Royal National ENT hospital in London where Dr Scadding is based (very close to Kings Cross / St Pancreas Station). You can see her privately if it comes to that. Contact Darby on 020 7915 1674 to get an appointment as she manages all the NHS and private appointments. I think that about 30 or 40 years ago there were some desense programmes carried out under less than perfect supervision in the UK and several patients died so here in the UK it has been frowned upon for a long time. That possibly explains your ENT's attitude. Addenbrookes have been doing some research on desense for those with peanut allergy as well as aspirin. Dr Scadding & Dr Nassar are working on a joint research programme looking for gentic link and I have joined that as I believe has .Your surgeon is letting you down and is taking the only approach he knows - using something in his surgeons toolbox. Side effects - difficut to say as it is early days for me. What I have found is that the nasty green stuff has been much easier to keep moving and out. As that movement started I had an ear infection and badly blocked up ears and associated deafness. That took about 3 weeks to sort itself out with a bit of aid from prescribed ear drops and over the counter ear wax solution. During that time I had some orchestral tinnitus sessions but that has now subsided pretty much thankfully. I currently have a chesty cough but again the nasty stuff is on the move and compared with pre desense times is much easier to manage. I hope that once the chesty cough clears up I could be in for a good run - you have to stay optimistic when you have Samters......... Hope that helps you - let me know how you get on Best wishes Mike

samters From: kdcurlywurly@...Date: Mon, 31 Jan 2011 19:09:53 +0000Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards

[Guest guest]

Mike,

Yes I do manage it myself...I had a scary time a couple of weeks ago, as my operation date was 21st Jan, so I had downed my daily dose from 600mg to 150mg 2 weeks before my op date, which is safer for my op...then my date was postponed, so I thought I'd better up my dose to 600mg again before going down again (apparently NOT a good idea lol). After being on 150mg for 4 days I went straight up to 600mg (I KNOW!!!!!) and of course had a big reaction...why i thought I'd be ok, I have no idea. My initial reaction was a big asthma attack and pressure inside my head, but I managed it at home by taking big doses of oral steroids and using my puffer, and it passed after 6 hours. The next day I went down to 300mg (after talking with Dr Nasser on the phone about what to do..and yes, he did tell me off!) and then went up s.l.o.w.l.y to 600mg. Over the whole of the process of going back up to 600mg my face

swelled up, especially my eyes, which got so puffy, and my chest felt quite tight.

I'm now back down to 150mg, and will have to go up to 600mg after my op, but I'll remember to do it very slowly, and have my steroids to hand. I hate messing around with it, and will be glad to get back on a more even keel being desens again.

Becky

From: Mike Hammond <rovenmike@...>Samters Group <samters >Sent: Tue, 1 February, 2011 8:40:36Subject: RE: Re: working or not working

Hi Becky & When I joined the genetic research programme in December there were only about another half dozen participant places left for Dr Scadding's list and I understand they had the remaining subjects all lined up for the early part of this year (200 in all). Yes I gave blood too - about 9 vials - I nearly had an empty arm! (Tony Hancock sketch for those, like me, old enough to remember) One thing may wish to consider is that Dr Scadding approaches desense with liquid aspirin dropped straight into the nose and I am having to take a 75mg daily dose that way to keep through the tolerence threshold. I think Dr Nassar uses an oral aspirin approach so then a much higher dose has to be ingested and that in itself has other potential side effects. Good luck with the operation Becky and I hope all goes well. Do you manage the escalation of your aspirin dose post

surgery yourself or do you have to have this supervised? I was told by Dr Scadding's team that if I miss a daily dose of aspirin I need to contact them to discuss how I restart? When I started the desense programme it was with just 10mg as the very first dose. By the way I live in South Suffolk but work in London (when I am well enough). I think there are about 15 Brits in this group so we are a bit of a rare breed, perhaps that makes us special.......... Best wishes Mike

samters From: beckyb256@...Date: Tue, 1 Feb 2011 07:32:40 +0000Subject: Re: Re: working or not working

Hi Mike, yes I am part of the research programme - well, I donated my blood anyway :-)

I used to get dreadful chest infections that lasted literally months, about twice a year, but have not had 1 bad chest infection since - I'e had one mild chest infection in 3 years!! My sinuses are still infected, and I have no sense of smell...BUT I have been able to breathe through my nose day and night easily since desense, and have had just one sinus op to open frontals. Desens definatley has helped. I am currently desens to aspirin as I'm awaiting an operation (this Friday and not Samters-related) and I feel quite unprotected...can't wait to get desens again.

Becky

From: Mike Hammond <rovenmike@...>Samters Group <samters >Sent: Mon, 31 January, 2011 22:43:48Subject: RE: Re: working or not working

Hi As has said desense is very likely to help you - about 70% success rate by all accounts. It should slow down polyp regrowth and also help relieve the congestion and asthma symptoms. I have found that I am not half so blocked up as I was, especially as occured during the night. You will need to get your GP to refer you and it took a while for me to get the Primary Health Care Trust to agree the referral. I think I was helped by the fact that both my GP and a specialist's sidekick at the Ipswich hospital where I had a polypectomy had trained at the Royal National ENT hospital in London where Dr Scadding is based (very close to Kings Cross / St Pancreas Station). You can see her privately if it comes to that. Contact Darby on 020 7915 1674 to get an appointment as she manages all the NHS and private appointments. I think that

about 30 or 40 years ago there were some desense programmes carried out under less than perfect supervision in the UK and several patients died so here in the UK it has been frowned upon for a long time. That possibly explains your ENT's attitude. Addenbrookes have been doing some research on desense for those with peanut allergy as well as aspirin. Dr Scadding & Dr Nassar are working on a joint research programme looking for gentic link and I have joined that as I believe has .Your surgeon is letting you down and is taking the only approach he knows - using something in his surgeons toolbox. Side effects - difficut to say as it is early days for me. What I have found is that the nasty green stuff has been much easier to keep moving and out. As that movement started I had an ear infection and badly blocked up ears and associated deafness. That took about 3 weeks to sort itself

out with a bit of aid from prescribed ear drops and over the counter ear wax solution. During that time I had some orchestral tinnitus sessions but that has now subsided pretty much thankfully. I currently have a chesty cough but again the nasty stuff is on the move and compared with pre desense times is much easier to manage. I hope that once the chesty cough clears up I could be in for a good run - you have to stay optimistic when you have Samters......... Hope that helps you - let me know how you get on Best wishes Mike

samters From: kdcurlywurly@...Date: Mon, 31 Jan 2011 19:09:53 +0000Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards

[Guest guest]

oh ? chest infections? i think i am having that right now-

didn't know that was part of it

asthma yes but this is hanging on.

Thanks for your reply

wish you well in your upcoming surgery

From: Bannister <beckyb256@...>Subject: Re: Re: working or not workingsamters Date: Tuesday, February 1, 2011, 2:32 AM

Hi Mike, yes I am part of the research programme - well, I donated my blood anyway :-)

I used to get dreadful chest infections that lasted literally months, about twice a year, but have not had 1 bad chest infection since - I'e had one mild chest infection in 3 years!! My sinuses are still infected, and I have no sense of smell...BUT I have been able to breathe through my nose day and night easily since desense, and have had just one sinus op to open frontals. Desens definatley has helped. I am currently desens to aspirin as I'm awaiting an operation (this Friday and not Samters-related) and I feel quite unprotected...can't wait to get desens again.

Becky

From: Mike Hammond <rovenmike@...>Samters Group <samters >Sent: Mon, 31 January, 2011 22:43:48Subject: RE: Re: working or not working

Hi As has said desense is very likely to help you - about 70% success rate by all accounts. It should slow down polyp regrowth and also help relieve the congestion and asthma symptoms. I have found that I am not half so blocked up as I was, especially as occured during the night. You will need to get your GP to refer you and it took a while for me to get the Primary Health Care Trust to agree the referral. I think I was helped by the fact that both my GP and a specialist's sidekick at the Ipswich hospital where I had a polypectomy had trained at the Royal National ENT hospital in London where Dr Scadding is based (very close to Kings Cross / St Pancreas Station). You can see her privately if it comes to that. Contact Darby on 020 7915 1674 to get an appointment as she manages all the NHS and private appointments. I think that

about 30 or 40 years ago there were some desense programmes carried out under less than perfect supervision in the UK and several patients died so here in the UK it has been frowned upon for a long time. That possibly explains your ENT's attitude. Addenbrookes have been doing some research on desense for those with peanut allergy as well as aspirin. Dr Scadding & Dr Nassar are working on a joint research programme looking for gentic link and I have joined that as I believe has .Your surgeon is letting you down and is taking the only approach he knows - using something in his surgeons toolbox. Side effects - difficut to say as it is early days for me. What I have found is that the nasty green stuff has been much easier to keep moving and out. As that movement started I had an ear infection and badly blocked up ears and associated deafness. That took about 3 weeks to sort itself

out with a bit of aid from prescribed ear drops and over the counter ear wax solution. During that time I had some orchestral tinnitus sessions but that has now subsided pretty much thankfully. I currently have a chesty cough but again the nasty stuff is on the move and compared with pre desense times is much easier to manage. I hope that once the chesty cough clears up I could be in for a good run - you have to stay optimistic when you have Samters......... Hope that helps you - let me know how you get on Best wishes Mike

samters From: kdcurlywurly@...Date: Mon, 31 Jan 2011 19:09:53 +0000Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards> > > >> > > > I was just curious. Has Samters caused any of you to quit your full time> > > > job and work part time? Or quit altogether? or work from home?> > > > I'm wondering because there is no way I could work a rigid schedule anymore> > > > away from

home. In fact my social life is pretty much the same...non> > > > existant. I don't remember ever seeing a survey on this before. Happy New> > > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > > like a few new members in the last month or so.> > > > Thanks> > > > Tami> > > > True Ark Creations> > > > Tami's Berry Farm> > > > www.truearkcreations.com> > > > Everyday holds a possibility of a miracle!> > > >> > > > > >> >>

[Guest guest]

Home from hospitalon breathing treatments-- now to start figuring out triggers and go through a complete LIFE CHANGE!

From: Bannister <beckyb256@...>Subject: Re: Re: working or not workingsamters Date: Tuesday, February 1, 2011, 2:32 AM

Hi Mike, yes I am part of the research programme - well, I donated my blood anyway :-)

I used to get dreadful chest infections that lasted literally months, about twice a year, but have not had 1 bad chest infection since - I'e had one mild chest infection in 3 years!! My sinuses are still infected, and I have no sense of smell...BUT I have been able to breathe through my nose day and night easily since desense, and have had just one sinus op to open frontals. Desens definatley has helped. I am currently desens to aspirin as I'm awaiting an operation (this Friday and not Samters-related) and I feel quite unprotected...can't wait to get desens again.

Becky

From: Mike Hammond <rovenmike@...>Samters Group <samters >Sent: Mon, 31 January, 2011 22:43:48Subject: RE: Re: working or not working

Hi As has said desense is very likely to help you - about 70% success rate by all accounts. It should slow down polyp regrowth and also help relieve the congestion and asthma symptoms. I have found that I am not half so blocked up as I was, especially as occured during the night. You will need to get your GP to refer you and it took a while for me to get the Primary Health Care Trust to agree the referral. I think I was helped by the fact that both my GP and a specialist's sidekick at the Ipswich hospital where I had a polypectomy had trained at the Royal National ENT hospital in London where Dr Scadding is based (very close to Kings Cross / St Pancreas Station). You can see her privately if it comes to that. Contact Darby on 020 7915 1674 to get an appointment as she manages all the NHS and private appointments. I think

that

about 30 or 40 years ago there were some desense programmes carried out under less than perfect supervision in the UK and several patients died so here in the UK it has been frowned upon for a long time. That possibly explains your ENT's attitude. Addenbrookes have been doing some research on desense for those with peanut allergy as well as aspirin. Dr Scadding & Dr Nassar are working on a joint research programme looking for gentic link and I have joined that as I believe has .Your surgeon is letting you down and is taking the only approach he knows - using something in his surgeons toolbox. Side effects - difficut to say as it is early days for me. What I have found is that the nasty green stuff has been much easier to keep moving and out. As that movement started I had an ear infection and badly blocked up ears and associated deafness. That took about 3 weeks to sort itself

out with a bit of aid from prescribed ear drops and over the counter ear wax solution. During that time I had some orchestral tinnitus sessions but that has now subsided pretty much thankfully. I currently have a chesty cough but again the nasty stuff is on the move and compared with pre desense times is much easier to manage. I hope that once the chesty cough clears up I could be in for a good run - you have to stay optimistic when you have Samters......... Hope that helps you - let me know how you get on Best wishes Mike

samters From: kdcurlywurly@...Date: Mon, 31 Jan 2011 19:09:53 +0000Subject: Re: working or not working

Hi MikeYes, I am in the UK but haven't been referred anywhere. My local ENT consultant will quite happily listen to me and all the questions I have for him but brushed aside desense when I mentioned it.I see him 6 weeks after my op and my polyps have always grown back. I had an op a year for 4 years and 2 last year. My consultant has basically said this is what happens, there is little we can do!I asked him if there were any tests that could be carried out and he has finally done a blood test to check my immune system-results due in March.How do I get referred? Do I have to go through my consultant? Did you have any side effects?Regards> > > >> > > > I was just curious. Has Samters caused any of you to quit your full time> > > > job and work part time? Or quit altogether? or work from home?> > > > I'm wondering because there is no way I could work a rigid schedule anymore> > > > away from

home. In fact my social life is pretty much the same...non> > > > existant. I don't remember ever seeing a survey on this before. Happy New> > > > Year to you all. I sincerely believe 2011 is going to be a great year. I'm> > > > pretty much at rock bottom now, so there is no other way to go but up now! I> > > > haven't posted in awhile, but I've been reading many of the posts. Looks> > > > like a few new members in the last month or so.> > > > Thanks> > > > Tami> > > > True Ark Creations> > > > Tami's Berry Farm> > > > www.truearkcreations.com> > > > Everyday holds a possibility of a miracle!> > > >> > > > > >> >>