and disability

[Guest guest]

I hear a lot of people talking about my handicap tag on my car. I don't need SSI now but I am glad to know that if I do it is there but for now I am really doing well. I suffer from shortness of breath a lot from the asthma and from my weight but I work everyday and I get my school work completed. I am not able to walk my dogs much and they suffer because of it but they are so small until they cannot walk far anyway. I don't have the headeaches as bad anymore because my doctor gave me a new drug for migraines that you put under your tongue and let it dissolve and they went away. I was surprised. I get to socialize a lot with friends and family and I cook a lot of big meals for everyone. Overall, I think I could be alot worse off. I take my Xolair when I remember to and I am okay for

now.

From: Robins <soniarobins@...>samters Sent: Wednesday, May 6, 2009 7:44:06 PMSubject: RE: Re: Samters- Question-Disability

I really shouldn’t complain, I still have my good days but also the bad days.

What I really hate the most is that when people find out you’re on a disability pension more than often I get the comment about not looking disabled.

The lack of being able to smell something worries me though are the toxic smells we’re unable to sense such as leaking gas from a stove or heater, petrol etc.

Oh and don’t get me started on the cooking, I’ve made some incredible disasters which fortunately I can see the funny side in – ever tried to cook a meal and add spices according to aroma? Taste of course is partially gone thanks to the lack of smell so I’ve had some VERY spicy meals and some with so much garlic it’d kill vampires worldwide!

Of course not having a sense of smell can also be a convenience, at family get togethers I’m the one nominated to change diapers which I can happily do because of the obvious.

I actually wrote to A Current Affair some time ago requesting they do a segment on Samters but I didn’t hear anything back which was unfortunate. If only it could get more publicity then perhaps there’d be more research grants.

From: otherbeach [mailto:Bret.@...] Sent: Thursday, 7 May 2009 12:26 AMsamters Subject: Re: Samters- Question-Disability

I'm sorry that it is so debilitating for you. But I've had the disease for about six years and cannot imagine stopping work, stopping activity, or otherwise going on Social Security disability. It is an inconvenience for me, not a disability. I am just happy that I am not a Perfume creator or chef! Now that would be a problem!>> > - thank you. I wish you the very best. I have been thinking about this for years, this disease is exhausting. Thanks again, this info. helps!!!> > > > Sincerely,> > > > Ginger> > > > > > > > > > > samters > From: soniarobins@...> Date: Wed, 6 May 2009 20:58:30 +1000> Subject: RE: Samters- Question> > > > > > > > > > Hi Ginger,> > > I've had Samters for around 30 years and it was about 7 years ago I was given a name for it when I was working as a teacher.> > In November of 2002 I was advised by my specialist to apply for a disability pension as things were at such a stage that he didn't want me returning to work.> > I had a full series of tests etc. and the upshot was, I apparently more than qualified for a disability pension which I've now been on since 2003.> > I would never have applied for a pension because I never considered myself bad enough but my ENT was the one who pushed me to apply for

it.> > > > > > From: ginger ryan [mailto:gingerryan219@...] > Sent: Wednesday, 6 May 2009 8:11 PM> samters > Subject: Samters- Question> > > > > > > > > I have had Samter's for exactly 20 years now, although no one was able to name my disease until 5 years ago. > I've always worked full time, my question is to everyone in the Samter's group. Has anyone stopped working completely and been able to apply for either disability, social security????? Any info. you can pass on would be so appreciated. Thanks you! > Ginger> > > > > > > > > > > > > samters > From: gongfy79@...> Date: Tue, 5 May 2009 03:03:47 +0000> Subject: Newcomer Checking Back In After New Meds> > > > > > Well, I have now been on my new medication for 60 days. My immunologist put me on 15 mg. per week of methotrexate (basically low dose chemotherapy).> > The only side effect I have noticed thus far is that my teeth seem more sensitive to hot and cold.> > I caught a cold and for the first time in years I didn't end up with a sinus infection. I think that is good. > > My face over my right maxillary sinus is still somewhat inflamed, but not as much as it was.> > I am not sure yet if this is worth no alcohol (whatsoever), no wine with dinner, no beer and pizza, etc, and blood

tests every 2 weeks. Time will tell. I get to go back on my birthday, June 16 and find out how long he thinks I need to stay on this stuff.> > > > > > > Insert movie times and more without leaving Hotmail®. See how. > > > No virus found in this incoming message.> Checked by AVG - www.avg.com> Version: 8.0.238 / Virus Database: 270.12.19/2099 - Release Date: 05/05/09 13:07:00> > > > > > > > > > __________________________________________________________> Hotmail® goes with you. > http://windowslive.com/Tutorial/Hotmail/Mobile?ocid=TXT_TAGLM_WL_HM_Tutorial_Mobile1_052009>

No virus found in this incoming message.Checked by AVG - www.avg.comVersion: 8.0.238 / Virus Database: 270.12.21/2101 - Release Date: 05/06/09 17:58:00