Disability and PA

[Guest guest]

I was curious to know how many of our group are on disability vs working full

time. I realize that many of us are retired. I am healthy enough to work full

time. This happened almost immediately once going on Spiro. Just a couple of

questions for the group:

Has anyone been awarded disability due to PA? Was it hard to get approved? Did

you have to have some other condition in order to get disability?

One of the things I am realizing is that although I am able to work, I still

have my good and bad days. As the disease evolves I am sure the bad days will

likely increase. Even if most in the group are not on full disability, I can't

help but think that many are probably in lower paying jobs due to this disease.

For example, maybe you could be a CEO, but you are a middle manager due to

performance suffering on the " bad days " . It is hard to quantify this, but

something I am thinking about sitting here at work.

BTW, my mind really wonders off the Spiro. More racing thoughts and anxiety now

that I am not taking the meds. Blood pressure readings this morning were

124/86, 121,84, and 119/85 without meds though. DASHING and exercise works my

friends!

35 yr old. Diagnosed 04/2011. Scheduled for AVS 08/23/2012.

[Guest guest]

It is very hard to get disability even with very severe BP. Well....until you have a stroke or get renal failure etc.Many times pts with bad high blood pressure cannot be employed due to the high blood pressure. Therefore they cannot get paid to get meds etc to get BP under control. I have seen this many times and also seen it in people coming out of prison. They are given meds for a few days then Nada. Can't get a job because BP is uncontrolled,, can pay for health care to get BP under control to get a job.However once you develop renal failure from HTN and need dialysis everything is paid for by you and me. It cost $50,000+ a year for every person on dialysis. Most get there because of uncontrolled HTN esp is they also have DM. Yet we have no way to provide good treatment to everyone with HTN and or DM to prevent renal failure. We need a better HTN lobby.CE Grim MD On Jul 25, 2012, at 10:11 AM, crzylnebkr wrote:

I was curious to know how many of our group are on disability vs working full time. I realize that many of us are retired. I am healthy enough to work full time. This happened almost immediately once going on Spiro. Just a couple of questions for the group:

Has anyone been awarded disability due to PA? Was it hard to get approved? Did you have to have some other condition in order to get disability?

One of the things I am realizing is that although I am able to work, I still have my good and bad days. As the disease evolves I am sure the bad days will likely increase. Even if most in the group are not on full disability, I can't help but think that many are probably in lower paying jobs due to this disease. For example, maybe you could be a CEO, but you are a middle manager due to performance suffering on the "bad days". It is hard to quantify this, but something I am thinking about sitting here at work.

BTW, my mind really wonders off the Spiro. More racing thoughts and anxiety now that I am not taking the meds. Blood pressure readings this morning were 124/86, 121,84, and 119/85 without meds though. DASHING and exercise works my friends!

35 yr old. Diagnosed 04/2011. Scheduled for AVS 08/23/2012.

[Guest guest]

I worked full-time throughout the entire 10+ years I was sick and undiagnosed,

and was a half-time grad student for much of that time. During most of those

years, my diagnosis was " anxiety " and I did have several periods during which I

was able to go on short-term disability. Basically there were times that the

anxiety would get so bad that I was afraid to be in the workplace - even on my

best days, my tolerance for B.S. is pretty low and I was concerned that I'd say

or do something that I'd regret!

Once I had a real diagnosis and I knew that the " anxiety " was really not that at

all, I was able to handle things better. During the 8 months between my

diagnosis and my surgery, I continued to work full-time but was able to work

from home when I didn't feel up to actually coming to work.

-msmith1928

LEft laparoscopic adrenalectomy 10/13/11

>

> I was curious to know how many of our group are on disability vs working full

time. I realize that many of us are retired. I am healthy enough to work full

time. This happened almost immediately once going on Spiro. Just a couple of

questions for the group:

>

> Has anyone been awarded disability due to PA? Was it hard to get approved?

Did you have to have some other condition in order to get disability?

>

> One of the things I am realizing is that although I am able to work, I still

have my good and bad days. As the disease evolves I am sure the bad days will

likely increase. Even if most in the group are not on full disability, I can't

help but think that many are probably in lower paying jobs due to this disease.

For example, maybe you could be a CEO, but you are a middle manager due to

performance suffering on the " bad days " . It is hard to quantify this, but

something I am thinking about sitting here at work.

>

> BTW, my mind really wonders off the Spiro. More racing thoughts and anxiety

now that I am not taking the meds. Blood pressure readings this morning were

124/86, 121,84, and 119/85 without meds though. DASHING and exercise works my

friends!

>

>

> 35 yr old. Diagnosed 04/2011. Scheduled for AVS 08/23/2012.

>

[Guest guest]

First, if you want to be CEO you shouldn't be sitting there dwelling on PA and surfing the net!

I am retired now but I was on disability for 6 1/2 years prior to reaching 65. I had retired early (at 50) from a career in computers. I was driving a tour bus and the doctors couldn't figure out my flank and testis pain so they put me on narcotics - good-bye professional driving position! Being in a "protected age group" I didn't have to go to work at Macs!

Your assumption that "bad days will likely increase" is not correct IMHO. If you proceed with an ADx or treat with meds (eplerenone is my choice ) and DASH your days should get better, MUCH BETTER!

My BP was 121/71, HR 69 and BS 108 this morning!

.....

>> I was curious to know how many of our group are on disability vs working full time. I realize that many of us are retired. I am healthy enough to work full time. This happened almost immediately once going on Spiro. Just a couple of questions for the group:> > Has anyone been awarded disability due to PA? Was it hard to get approved? Did you have to have some other condition in order to get disability?> > One of the things I am realizing is that although I am able to work, I still have my good and bad days. As the disease evolves I am sure the bad days will likely increase. Even if most in the group are not on full disability, I can't help but think that many are probably in lower paying jobs due to this disease. For example, maybe you could be a CEO, but you are a middle manager due to performance suffering on the "bad days". It is hard to quantify this, but something I am thinking about sitting here at work.> > BTW, my mind really wonders off the Spiro. More racing thoughts and anxiety now that I am not taking the meds. Blood pressure readings this morning were 124/86, 121,84, and 119/85 without meds though. DASHING and exercise works my friends!> > > 35 yr old. Diagnosed 04/2011. Scheduled for AVS 08/23/2012.>

[Guest guest]

Since I don't have a DX of PA I can not say I am disabled because of PA. My Dx

for disability is Chronic Fatigue Syndrome. Altho I was never tested nor do I

think I have CFS. My PCP just wrote it in my chart. I do get Fatigued to the

point I just have to stop and rest.

> >

> > I was curious to know how many of our group are on disability vs working

full time. I realize that many of us are retired. I am healthy enough to work

full time. This happened almost immediately once going on Spiro. Just a couple

of questions for the group:

> >

> > Has anyone been awarded disability due to PA? Was it hard to get approved?

Did you have to have some other condition in order to get disability?

> >

> > One of the things I am realizing is that although I am able to work, I still

have my good and bad days. As the disease evolves I am sure the bad days will

likely increase. Even if most in the group are not on full disability, I can't

help but think that many are probably in lower paying jobs due to this disease.

For example, maybe you could be a CEO, but you are a middle manager due to

performance suffering on the " bad days " . It is hard to quantify this, but

something I am thinking about sitting here at work.

> >

> > BTW, my mind really wonders off the Spiro. More racing thoughts and anxiety

now that I am not taking the meds. Blood pressure readings this morning were

124/86, 121,84, and 119/85 without meds though. DASHING and exercise works my

friends!

> >

> >

> > 35 yr old. Diagnosed 04/2011. Scheduled for AVS 08/23/2012.

> >

>

[Guest guest]

Most likely low K ?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 25, 2012, at 20:06, Francis Bill SUSPECTED PA <georgewbill@...> wrote:

Since I don't have a DX of PA I can not say I am disabled because of PA. My Dx for disability is Chronic Fatigue Syndrome. Altho I was never tested nor do I think I have CFS. My PCP just wrote it in my chart. I do get Fatigued to the point I just have to stop and rest.

> >

> > I was curious to know how many of our group are on disability vs working full time. I realize that many of us are retired. I am healthy enough to work full time. This happened almost immediately once going on Spiro. Just a couple of questions for the group:

> >

> > Has anyone been awarded disability due to PA? Was it hard to get approved? Did you have to have some other condition in order to get disability?

> >

> > One of the things I am realizing is that although I am able to work, I still have my good and bad days. As the disease evolves I am sure the bad days will likely increase. Even if most in the group are not on full disability, I can't help but think that many are probably in lower paying jobs due to this disease. For example, maybe you could be a CEO, but you are a middle manager due to performance suffering on the "bad days". It is hard to quantify this, but something I am thinking about sitting here at work.

> >

> > BTW, my mind really wonders off the Spiro. More racing thoughts and anxiety now that I am not taking the meds. Blood pressure readings this morning were 124/86, 121,84, and 119/85 without meds though. DASHING and exercise works my friends!

> >

> >

> > 35 yr old. Diagnosed 04/2011. Scheduled for AVS 08/23/2012.

> >

>

[Guest guest]

Hello jlkbbk2003, msmith_1928 and crzylnebkr, My name is Phil from Canada. I have a long sad story as well. This spans over 3 years with symptoms very similar to msmith1928. My life has been hell for over 3 years now. On July 11/2012 I was diagnosed with Conn's. I had to leave my job 2 years ago as I could no longer function in a working environment. For most of this time I had been covered with LTD. That was until Feb/2012 when they cut me off. I'm now suing my insurance company. I used to think it was just me - a big strong "tuff" guy being a wimp. But I tell you (as you must know), it was impossible to function normally in my sales job - fast food, alcohol, and tons of pressure (without knowing my illness)...pressure that would eventually do me in. I was just about to post an email basically asking the same thing crzylnebkr/ was asking. I want to keep this email string going/active with anybody that can contribute. If we realize we're in the same boat, this may help one/all of us in the future as we "negotiate" insurance benefits. Phil hyperaldosteronism From: jlkbbk2003@...Date: Wed, 25 Jul 2012 08:56:37 -0700Subject: Re: Re: Disability and PA

My sad story is too long to relate again here, but while I am not on disability, and at the time in 03/2010 when I decided I HAD to find the answers to why I was so very sick and lost my high paying job over the consequences of it, I could not even get workers comp. But this was at the end of a vicious 7 or so years of struggling every single day against the tide of hypokalemia (they always blamed it on a med or something stupid so never had me taking it though I didn't have a normal K blood test between 2003 to really the start of 2011.) They also continuosly misdaignosed hyperthyroidism too, but found that in 04/2010 and the PA in 11/2010. It all fell apart for me though in 03/2010 and the medical board in AZ will still not allow me to recover my license.

So PA is absolutely the leading reason I am where I am.

From: msmith_1928 <janeray1940@...>Subject: Re: Disability and PAhyperaldosteronism Date: Wednesday, July 25, 2012, 10:44 AM

I worked full-time throughout the entire 10+ years I was sick and undiagnosed, and was a half-time grad student for much of that time. During most of those years, my diagnosis was "anxiety" and I did have several periods during which I was able to go on short-term disability. Basically there were times that the anxiety would get so bad that I was afraid to be in the workplace - even on my best days, my tolerance for B.S. is pretty low and I was concerned that I'd say or do something that I'd regret!Once I had a real diagnosis and I knew that the "anxiety" was really not that at all, I was able to handle things better. During the 8 months between my diagnosis and my surgery, I continued to work full-time but was able to work from home when I didn't feel up to actually coming to work.-msmith1928LEft laparoscopic adrenalectomy 10/13/11>> I was curious to know how many of our group are on disability vs working full time. I realize that many of us are retired. I am healthy enough to work full time. This happened almost immediately once going on Spiro. Just a couple of questions for the group:> > Has anyone been awarded disability due to PA? Was it hard to get approved? Did you have to have some other condition in order to get disability?> > One of the things I am realizing is that although I am able to work, I still have my good and bad days. As the disease evolves I am sure the bad days will likely increase. Even if most in the group are not on full disability, I can't help but think that many are

probably in lower paying jobs due to this disease. For example, maybe you could be a CEO, but you are a middle manager due to performance suffering on the "bad days". It is hard to quantify this, but something I am thinking about sitting here at work.> > BTW, my mind really wonders off the Spiro. More racing thoughts and anxiety now that I am not taking the meds. Blood pressure readings this morning were 124/86, 121,84, and 119/85 without meds though. DASHING and exercise works my friends!> > > 35 yr old. Diagnosed 04/2011. Scheduled for AVS 08/23/2012.>

[Guest guest]

DASH like you life depended on it.CE Grim MDOn Jul 26, 2012, at 4:24 PM, Phil Hobbs wrote:

You just wrote the story of my life over the past three years. I have "been there, done that!". I can't emphasize enough how much it hurts to read your story knowing that it's a reflection of the crap I've been through…my empathy wasn't hard to find. I've been to hell and back…it sounds like you've travelled the same road. I have seen more "specialists" than anyone ever should. I have spent quality time in the psych-ward where they continued to pump me through multiple medications until they promised that they would bet the "right recipe". None of them EVER mentioned Conn's or DASH, or ANYTHING that resembled a qualified diagnosis. Nothing ever worked.Thanks for your note. It's given me solace not to feel alone. I'm in the process of what should be a full recovery, and for the first time - in a VERY long time - I may feel good again, a feeling I lost a few years ago.Phil On 2012-07-26, at 4:18 PM, Bingham wrote:

I bet Phil, that we all "knew" and in hindsight thay instinct was telling us that something was wrong physically, that we weren't just stressed out. and maybe us men can relate a little better to each other in this sense because culturally we're kind of taught to tough everything out, even though it's not really better for the women who are sick too.

Because we could seemingly give the appearance that we still were who we were for a long time and went to work, did our jobs, etc, others just couldn't see or wouldn't see that we really were getting sicker. I thik back to the everday massive energy I would spend physically to do anything (I am an early bed/early riser since I was a young boy and I NEVER sleep in, but just getting out of bed was so exhausting I can't even describe it) , emotionally, psychologically, even spiritually, to get through a day also is beyond description unless one has been there. Every aspect of my life required everything I had, and when I had a day off I was so dead I could do nothing. And on top of that the headaches, brain fog, bowel issues, whatever, just made it all worse.

What made it THE worst though was that it seemed everyone blew us off as getting lazy, or depressed, or just "stressed out" and so on. I literally got in an argument once and walked out on a doc telling him bluntly "I am NOT depressed!" when they were offended I wouldn't take another round of the miracle sugar pills SSRI's (Here' my advice as a medical professional ANYTIME they say you have to take something for a few months for it to start working is crap and it means the pharmacy company basically knows that 2-3 months in everyone at least recoups their money back - the exception may be a medicine to shrink a tumor or something like that). But they never even slightly worked. EVER.

Now, in my case I know my symptoms were all from the low K and the consequences of that - then at the end there were some hyperthyroid issues mixed in. I had asked my docs more than once, "Why am I spilling my potassium?" and I have a vivid mental picture of asking one as I sat in his office that very question. They just shrugged their shoulders. I went in to ER's at 180/140 and they always sent me home at 160/120 and the only reason for the drop was probably some pain medicine to stop the roaring headache -AND they would always replace my K and I would notice feeling better for about 2 days (and sadly I would think to myself "am I just a pain med seeker?" "is that why I feel better for 2 days - because of some morphine or demerol? It wasn't till I got my records and saw I got toradol alot and always some K that I could put 2 and 2 together). No one ever put me on potassium. I NEVER heard of DASH (I read about it in the journals,

but guilty as I paid not much attention until I joined this list) .

And no one, not ever one time, in the hospital, in the ER's, in the clinics, ever thought of or tested for Conn's or PA. I even had multiple 24 hour urines once as an inpatient (for uncontrolled HTN) and they never checked renin and aldo.

That is what we're up against all the time. We need to make it so the others don't go through what we have gone through.

Phil,I was asking out of curiosity. My story has a happy ending so far. I have been working for over a year. I was diagnosed April 2011 after two trips to Mayo and over a year of being to sick to work. Spiro, DASH, and exercise will work.Hang in there,> >> > I was

curious to know how many of our group are on disability vs working full time. I realize that many of us are retired. I am healthy enough to work full time. This happened almost immediately once going on Spiro. Just a couple of questions for the group:> > > > Has anyone been awarded disability due to PA? Was it hard to get approved? Did you have to have some other condition in order to get disability?> > > > One of the things I am realizing is that although I am able to work, I still have my good and bad days. As the disease evolves I am sure the bad days will likely increase. Even if most in the group are not on full disability, I can't help but think that many are> probably in lower paying jobs due to this disease. For example, maybe you could be a CEO, but you are a middle manager due to performance suffering on the "bad days". It is hard to quantify this, but something I am thinking about sitting here at

work.> > > > BTW, my mind really wonders off the Spiro. More racing thoughts and anxiety now that I am not taking the meds. Blood pressure readings this morning were 124/86, 121,84, and 119/85 without meds though. DASHING and exercise works my friends!> > > > > > 35 yr old. Diagnosed 04/2011. Scheduled for AVS 08/23/2012.> >>