Guest guest Posted June 19, 2000 Report Share Posted June 19, 2000 , My name is . My mother is Ernestine. Happens all the time. When I run up against a dr like that, he only gets my money once. I have a gp down here (Boyington) who's caring and interested--reads all the stuff I bring him on mastocytosis and CU--and who is willling to listen to my opinions and take my input into my care seriously. That's about the best one can do short of visiting a specialist who knows what he/she is doing--on the long odds that you could find one. He recognizes that since I have had this for 32 years, I know a bit about what works for me and what doesn't. Lucky for him: he has never told me it's stress-induced or psychosomatic. But that's my own little soapbox. If you hear of a good dr up that way let me know. I coem in to shop sometimes. Maybe we could get together for acup of coffee. Be cyber-seeing you, , smiling Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2000 Report Share Posted July 11, 2000 Hi - There are several ICUS members that are on SSI for their CU. I would strongly suggest that you place the other cases into reference for your SSI review. Also, referrer to ICUS as documentation to the FACTS of the debilitating affect that CU can have and is having on people. 1) In the past year, Tonya and both lost pregnancies -- a miscarriage is a MAJOR life event!!! 2) Myra's daughter suffered from life altering/life threatening " shocking " with her CU. She could have DIED during MANY of these hiving events!! That is life altering -- to say the least. 3) Many others have lost jobs related to their angioedemia and CU. No one wants to look beaten at work. 4) Others have lost jobs because of the physical demands and the medications that treat CU. Either you suffer and risk the complications of anaphylaxis because you restrict your medication intake or you take your medications and are ineffectual at work due to the side-effects of the medications -- like DO NOT DRIVE or use equipment. These side-effects can be documented and should be added to your SSI file during the appeal. 5) Take the ICUS pictures and pictures of yourself hiving and put them in your SSI appeal. Remember 1 pictures says more than a thousand words. Let them SEE what you are dealing with. There are simply too many other stories to count of people with CU having major life altering events due to their CU. It is not a welcomed condition and the SSI folks are either being ignorant or stupid. Everyone is ignorant -- we all learn. That can be fixed. However, when someone is willfully playing stupid -- you can't fix stupid! Yes - keep connecting those dots and don't forget the guess that angio shape. Be well, my prayers are with you ~Phil~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2000 Report Share Posted July 11, 2000 Hi - There are several ICUS members that are on SSI for their CU. I would strongly suggest that you place the other cases into reference for your SSI review. Also, referrer to ICUS as documentation to the FACTS of the debilitating affect that CU can have and is having on people. 1) In the past year, Tonya and both lost pregnancies -- a miscarriage is a MAJOR life event!!! 2) Myra's daughter suffered from life altering/life threatening " shocking " with her CU. She could have DIED during MANY of these hiving events!! That is life altering -- to say the least. 3) Many others have lost jobs related to their angioedemia and CU. No one wants to look beaten at work. 4) Others have lost jobs because of the physical demands and the medications that treat CU. Either you suffer and risk the complications of anaphylaxis because you restrict your medication intake or you take your medications and are ineffectual at work due to the side-effects of the medications -- like DO NOT DRIVE or use equipment. These side-effects can be documented and should be added to your SSI file during the appeal. 5) Take the ICUS pictures and pictures of yourself hiving and put them in your SSI appeal. Remember 1 pictures says more than a thousand words. Let them SEE what you are dealing with. There are simply too many other stories to count of people with CU having major life altering events due to their CU. It is not a welcomed condition and the SSI folks are either being ignorant or stupid. Everyone is ignorant -- we all learn. That can be fixed. However, when someone is willfully playing stupid -- you can't fix stupid! Yes - keep connecting those dots and don't forget the guess that angio shape. Be well, my prayers are with you ~Phil~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2000 Report Share Posted July 11, 2000 Ronda - that's awful! How can they get away with adding dates and stuff? What's the point of the SS system if you have no comeback? How can they disagree with your doctors!? Can you stock up meds before they pull the card, or doesn't it work like that over there? Sorry so many questions! But really! - Grrrrrrrr! Re: Urticaria > Urticaria > > Hi All, > Between my chronic anxiety and CU w/angio, the doctor won't let me work. > My hives are caused by a heat chemical that comes out when I exercise, wear > tight clothing, exert myself, or have anxiety. The State told me to apply > for disability. (I'm hoping the CU goes bye-bye, and the anxiety takes a > hike sometime in the future so I can get back into the work force.) But, > anyway, I got turned down for disability and SSI. Social Security says they > don't agree with my doctors. And, get this, they said that they believe my > hives are cured. I said, " Then what are these red itchy things I have right > now? " Duh! Boy, can S.S. reword things, and mess with people's minds! They > even changed a date so I wouldn't have enough quarters in to be eligible for > SSD. They pulled a date out of mid-air, just pushed it ahead enough so I > would come up short. I had a panic attack and started hiving, just meeting > with S.S. > I filed an appeal, which they'll probably turn down, they said. I'll > end up having to go to a hearing. The guy at S.S. was against me when I went > in, but he was on my side by the time I left. 'Cause there I was having a > panic attack, hiving, itching and starting with angio. > Planning to be making a lot of visits to the ER in the near future. I > have a temporary medical card, but they're going to pull it. So I won't be > able to afford my meds for the CU. > So, that's my latest update. I'll probably be playing " Connect the > Hives " and " Name That Angio Shape " again in the near future. (I'm stocking > up on magic markers!) Might as well joke around and have fun with it. Hope > you all have a GOOD day. You're in my prayers. > Ronda > > > ______________________________________________________________________ > To unsubscribe, write to urticaria-unsubscribe@... > > Start Your Own FREE Email List at http://www.listbot.com/links/joinlb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2000 Report Share Posted July 11, 2000 Ronda - that's awful! How can they get away with adding dates and stuff? What's the point of the SS system if you have no comeback? How can they disagree with your doctors!? Can you stock up meds before they pull the card, or doesn't it work like that over there? Sorry so many questions! But really! - Grrrrrrrr! Re: Urticaria > Urticaria > > Hi All, > Between my chronic anxiety and CU w/angio, the doctor won't let me work. > My hives are caused by a heat chemical that comes out when I exercise, wear > tight clothing, exert myself, or have anxiety. The State told me to apply > for disability. (I'm hoping the CU goes bye-bye, and the anxiety takes a > hike sometime in the future so I can get back into the work force.) But, > anyway, I got turned down for disability and SSI. Social Security says they > don't agree with my doctors. And, get this, they said that they believe my > hives are cured. I said, " Then what are these red itchy things I have right > now? " Duh! Boy, can S.S. reword things, and mess with people's minds! They > even changed a date so I wouldn't have enough quarters in to be eligible for > SSD. They pulled a date out of mid-air, just pushed it ahead enough so I > would come up short. I had a panic attack and started hiving, just meeting > with S.S. > I filed an appeal, which they'll probably turn down, they said. I'll > end up having to go to a hearing. The guy at S.S. was against me when I went > in, but he was on my side by the time I left. 'Cause there I was having a > panic attack, hiving, itching and starting with angio. > Planning to be making a lot of visits to the ER in the near future. I > have a temporary medical card, but they're going to pull it. So I won't be > able to afford my meds for the CU. > So, that's my latest update. I'll probably be playing " Connect the > Hives " and " Name That Angio Shape " again in the near future. (I'm stocking > up on magic markers!) Might as well joke around and have fun with it. Hope > you all have a GOOD day. You're in my prayers. > Ronda > > > ______________________________________________________________________ > To unsubscribe, write to urticaria-unsubscribe@... > > Start Your Own FREE Email List at http://www.listbot.com/links/joinlb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2000 Report Share Posted July 12, 2000 I can tellyou that Zantac won't make you sleepy. It is used as a med for heartburn and taken with Zyrtec it really worked for me.I think that you can build up tolerance for the Zyrtec so that you aren't sleepy after a while Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2000 Report Share Posted July 12, 2000 Hi , Does this mean you are going to be taking only zantac rather than only zyrtec, and nothing else? It's just that zantac and zyrtec seem to be best taken together (the H1/H2 combination). What are your symptoms? The zantac is an antacid as well as an H2 anti-histamine, so if you suffer any tummy trouble it might well help with that and if your symptoms do improve on it it might be pointing you in the right direction as to the actual cause of your CU (such as h-pylori for example). In terms of tackling the urticaria though you will probably need to take a drug better designed for that purpose, or better still a combination of drugs that actually block the release of histamine at 'source.' If zyrtec doesn't suit you then there are other combinations you can take to this effect (atarax and tagamet for instance). re: Urticaria Urticaria Hi Leeann, I thought I'd worn you about taking "Zyrtec". I took it and got really tired and sleepy, so be careful at work. I'm getting a new prescription called "Zantac", it will probably do the same thing, but what are we to do? Take care. To unsubscribe, write to urticaria-unsubscribe@...Start Your Own FREE Email List at http://www.listbot.com/links/joinlb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2000 Report Share Posted July 12, 2000 Hi , Does this mean you are going to be taking only zantac rather than only zyrtec, and nothing else? It's just that zantac and zyrtec seem to be best taken together (the H1/H2 combination). What are your symptoms? The zantac is an antacid as well as an H2 anti-histamine, so if you suffer any tummy trouble it might well help with that and if your symptoms do improve on it it might be pointing you in the right direction as to the actual cause of your CU (such as h-pylori for example). In terms of tackling the urticaria though you will probably need to take a drug better designed for that purpose, or better still a combination of drugs that actually block the release of histamine at 'source.' If zyrtec doesn't suit you then there are other combinations you can take to this effect (atarax and tagamet for instance). re: Urticaria Urticaria Hi Leeann, I thought I'd worn you about taking "Zyrtec". I took it and got really tired and sleepy, so be careful at work. I'm getting a new prescription called "Zantac", it will probably do the same thing, but what are we to do? Take care. To unsubscribe, write to urticaria-unsubscribe@...Start Your Own FREE Email List at http://www.listbot.com/links/joinlb Quote Link to comment Share on other sites More sharing options...
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