what kind of employment is okay for a hcmer?

[angela woods]

I am new to all this. I have been symptomatic since 2000. I was a caregiver for developmental adults. I loved my work. After a year I started having horrible chest pain . I was unable to catch my breath. one nite I swelled about 15-20lbs over nite. The next day my mother was in shock she had just seen me a few days earlier. I ignored that and kept on working. I was only 32 at the time. I did not think that this was possibly dangerous. It went on for a few months and I had a really bad night. My chest was hurting so bad I was in tears. I went to the hostpital. They dismissed me. My cardiac enzymes were skyhigh my ekg was abnormal. They told me it was probably anxiety and sent me home with ativan. I went to local doctors Had angiograms that were normal, stress tests even an echo. They told me my heart was enlarged but that was normal for me. My symptoms worsened i was blacking out at work. I did not know what to do at my witts end. I went thru this for 3 years. The last visit to my local cardiologist I told him my pain was worse he told me sometimes we dont have all the answers and He couldnt do anymore for me. I went to my primary and got a referral to Stanford university medical center. I was diagnosed 3 months later. I wore a holter monitor for 1 month it showed I had vt and was given a icd in march. I feel better knowing. I do take 300mg of toprol xl,20mg of norvasc,20mglasex and nitro prn. I am still with the same symptoms. Have not been able to work. I am a single mother of 3 and recently gave my house up and moved in with my mom. I have applied for ssi disability was denied and now are appealing my denial. I want to work but Its impossible at times. I am a liability(I was told) Im only trained to do what ive been doing and that is really hard on me since my patients weigh over a 100lbs and Im advised to only lift 10lbs. Im so frustrated! I hate this and dont know if I will be able to be alrite with all this! PlEASE HELP ME!

Angela

[Lisa Salberg]

Re: what kind of employment is okay for a hcmer?

most forms of employment are fine for those with HCM. The real question comes down to how do we manage your symptoms and help you feel the best YOU can feel?

Call me sometime today and we can go over a few ideas.

Lisa

[Pam Alexson]

Re: what kind of employment is okay for a hcmer?

Hi Angela,
I am glad we are now getting to your full story ,; there were bits and pieces of your story specaled into the posts in which you replied to others . It is sometimes hard to jump right in and start with your story and none of us wish to be pushy. I feel it is better to wait and be invited in .Glad you have posted about you and invited us in.
Many will offer support here.
There are many things going on for you and you sound overwhelmed to say the least. Have you called the office and spoken to Lisa yet? You will get a wealth of information an options available to start you on your way. Seeing a secialist who deals with HCM patients is of utmost importance. Don't worry it is not too late , many of us started with our PCP's and some with cardiologists who misguided us about what was wrong and what to do some of us even saw "specialists" who said they could not help us and that they were sorry. There is good ,better and best in most things in life that we encounter. Aren't we lucky to at least have the freedom of choice.
It is very important to be sure that you are on the best medications for your individual symptoms. There are a variety that are used and they all vary in treatment of our symptoms differently . It is not unusual to have changes during the course of treatment of your HCM. Therefore meds and treatments change.
The important thing is to get you feeling better and enjoying life better. So you need to start with an excellent care provider. This care provider will guide you and monitor your condition and inform you in supportive and understanding manner and not make you feel like it is all in your head.God knows we have all been there.
So about the work. Yours was a particularly tough area, I can say that because I worked in hospital with the developmentally disabled. They were there because they would often get so out of control in their living environments that they had to be hospitalized(psych) to attempt to stabilize them. It was an extremely physically challenging job especially when we had to restrain them. I also worked with them and directed care providers in the homes. These people like youself deserve full respect and understanding for working with such a challenging clientel.
If you can not work then you must know. Hopefully your doctors are supportive because the disability board is tough and the Federal court is even more so. You must meet all criteria ,and they spell it out very clearly for full and permanent disability. This clearly states that there is no job that you could perform safely as it would impact negatively on your health.
I think as well as pursuing your disability as you see necessary then you also at least have to see if you are recieving the right type of treatment as I have previously mentioned. The right treatment may afford you the ability to feel better and perhaps do something far less physically challenging.
Good luck and I hope I have helped you some. Take it slow and try not to become overwhelmed, we are with you.
Pam

[Burton Borrok]

Re: what kind of employment is okay for a hcmer?

Hi Angela,
As far as your medical condition goes, I hope you have or will speak with Lisa, (her number is at the bottom of every page.) She is our resident expert and a great fund of information. She can answer a lot of your questions, and guide you in many ways.

I would like to address your duel with Social Security Disability. This can be a slippery slope if you are not careful, as the claim processors try to deny every claim possible. I guess it’s a good thing to protect the fund as much as possible, but they will hang a denial on the flimsiest of reasons. I would therefore advise you to do a few things to couch your presentations to them in the most favorable light possible.

First, call your library system to find out if there is a law library available for your use within a reasonable distance. If not, you can do it yourself over the internet, but it would be easier in the library where there is staff to help you in your search.

Next, look up the exact guidelines of requirements that must be met to qualify for disability in your particular case. In your presentations to them, make sure you cover all the basses specified in the guidelines. Document everything – everything – and get signed letters and records detailing your limitations. For example, you stated;

I have applied for ssi disability was denied and now are appealing my denial. I want to work but Its impossible at times. I am a liability(I was told) Im only trained to do what ive been doing and that is really hard on me since my patients weigh over a 100lbs and Im advised to only lift 10lbs.Angela

If that was presented to you on paper - signed – that should be part of your presentation. If it was verbal, ask your supervisor/employer to please, “put it in writing.” If your doctor said to lift nothing over ten pounds – get it in writing. (Actually you should also have a copy of your medical records – as I’m sure SSI does – and I’ll be willing to bet the ten pound weight restriction is not in the records.)

Once you have your details in good control, push the appeal, and if that’s denied – try to find out why, and correct your presentation to cover that situation also. Keep pushing until either your claim is approved or you wind up before an Administrative Law Judge. That hearing is usually in an office where the judge sits at a desk or table, and you get to present your case and documentation in a fairly informal setting.

We had a difficult situation and fought my wife’s claim for five years. Ultimately the judge in our case found in our favor, and benefits were awarded back to the date we first applied. As it turned out, SSI was basing their denial on the fact that the person who pulled her medical records at the hospital had checked the cover sheet box that said she was able to work. (They had never seen her, did not read her records, was not a doctor and did not know the legal requirements, but nonetheless they effectively stalled the claim for years.)

SSI is your right. You paid for that insurance and your legal claim should be honored. Make sure they do so.
Burt

[Pam Alexson]

Re: what kind of employment is okay for a hcmer?

Yes Burt there are forms that are sent to the the physicians requesting the limitations on lifting . It is important that the doctor pay close attention to the wording as one slip can mean a denial. Three denials and then you are assigned to a Federal court as it becomes a contest with the government ,requesting them to overrule the state level disability investigators decision. In all cases it really is a must to hire a Disability Lawyer. This way by law you can not be taken advantage of by anyone unsavory. Enlist the aid of a local congressmans office, make sure you have all your records. It is not unusual and appeared very routine for my case, the government hires and pays for an expert witness to prove you not disabled.This witness is a cardiologist. Mine was in the court room with me at the end of the table watching me very carefully. He had already obviously reviewed my case with a fine tooth comb.The court room was real , he sat up high on a bench , had a gavel and used it, and was NOT warm and fuzzy,( Oh my, my heart is thumping just remembering the stress). The cardiologist was actually very nice and asked the judge if he could speak to me? The Judge said ,"when we are done."
I believe but will look it up that I had to meet call criteria for a 403B( full disability ).
Pam

[mtlieb]

Re: what kind of employment is okay for a hcmer?

Angela,

Social security disability will usually deny you, as long as there is ANY work that you are capable of doing. If you are interested in other options that will allow you to continue working, then you might try calling the Office of Vocational Rehabilitation (OVR). This is a federal program that provides re-training to people with various disabilities, and through the OVR i am now attending graduate school.

I am 41 years old, and because of my HCM, i am unable to do the job that i've been educated and trained in, and have performed for most of my adult life. Like all of us i think, i want to continue working and enjoy a higher quality of life. Through the OVR and low-interest student loans i was able to find the resources available to help me do that. I also kind of feel that once we accept ourselves as being disabled, we tend to become disabled... and that is something i was not quite willing to accept.

Good luck to you,

Jim

[Pam Alexson]

Re: what kind of employment is okay for a hcmer?

Jim said:"I also kind of feel that once we accept ourselves as being disabled, we tend to become disabled... and that is something i was not quite willing to accept."
I just want to add that it is not easy to accept disability any way that any one looks at it . Disability is serious business. I personally have seen many people abuse it. If a person is not well enough to work, that is something that is decided on between the individual and their doctor. The final decision is then put in the hands of supposedly objective individuals who do not have a clue as to what has transpired in that particular individuals life.They have had to decide often times based on poorly scripted and non accurate details scattered and not well documented files eliciting the true picture. Certainly the investigators may be people who until reading these papers may never have heard of HCM and all the various effects it can have on the individual.
So sorry Jim, I disagree from my personal experience alone . Although I respect each individuals right to an opinion and I accept yours. I think those who are disabled do not become disabled once they accept themselves as disabled. I do not believe anyone would really desire in the first place to be disabled.
Just my 2 cents
Pam

[mtlieb]

Re: what kind of employment is okay for a hcmer?

That's cool Pam... we can disagree!

As you stated yourself... a person's disability is decided mutually by an individual and their doctor(s). I was just trying to say that i was/am not ready to commit myself to that line of thinking. And i do believe that once you resign yourself permanently to the disability aspect, it is hard to get yourself back out of that frame of mind. Don't get me wrong, there are HCM'ers who cannot and will not ever be able to do any kind of work, and unfortunately for those folks social security disability is the only option. But i also think those cases are very few and far between, especially in the computer age. SSI should be a last resort.

The title that Angela gave this thread is... what kind of employment is okay for a hcmer?... and i was trying to provide her with some helpful information as to how she may remain in the workforce, like she wants to, and find resources to enable herself to do that.

Jim

[angela woods]

Re: what kind of employment is okay for a hcmer?

thank you so far for you who responded. I apoligize for posting two forums. I wasnt sure if the first one had even went thru. I just want to say I do see a doctor that does specialize with hcm. I go to the stanford clinic almost monthly. They are still messing with my meds. Trying to manage my pain has been the biggest challenge. My cheif complaint all these years have been chest pain. My heart felt tired. It was always hard for me to explain. I didnt know all this other stuff went with this. I kinda hoped it was in my head. at the sme time Im at ease knowing its something real. Working is something I take pride in. I never thought that ssi was my last resort. I just knew I couldnt do what I had been trained for. How do I get started in Voc training? Do I wait my my appeal? Angela

[Pam Alexson]

Re: what kind of employment is okay for a hcmer?

Angela,
Jim mentioned the office of vocational training. You can probably find out more by putting those words in the search engine and picking appropriate headings and reading as much as you can. Jim maybe you can give Angela some more help with this.
You can also go to: www.ssas.com
HHere you will find a listing of The 137 Unskilled Sedentary Occupations.
Also you can go to:www.socialsecurity.gov/pubs/englist.html
Then click on Disability Benefits, then click on Disability Evaluation under Social Security( The Blue Book),then click Adult Listings (part A) and then Cardiovascular System 4.00. There is a lot here but it gives you an idea as to what criteria is used to determine if you qualify.
I hope this helps.
Best to you .
Pam

[angela woods]

Re: what kind of employment is okay for a hcmer?

today I made an appointment with a dept. of rehabilitation counselor. I m feeling better today knowing I m going in some direction. This is all so new too me. Angela

[Pam Alexson]

Re: what kind of employment is okay for a hcmer?

Great first step Angela. Take it slow, take care of you first and the rest will follow slowly. There is no need to pressure yourself you already have a lot to deal with. Just having three kids is a lot , I know I have raised 3 and have traveled a similar path as you. Oh and I live next house over from my parents, in their other house. You are not alone.
Feel better .
Pam

[WildBill]

Re: what kind of employment is okay for a hcmer?

Angela, I work with a state employment dept. I have spoken with some disability consultants and they both agree on one main point in regards to ssi. The majority of applicants will be denied benefits twice. You will have to appeal twice to get any results. They don't make it easy for you. When I blew out my back 15 years ago I thought my working days was over. I applied for SSI and the guy asked me, "Can you walk?" I said yes, "Can you move your arms? I said yes. He said "Then your chances of getting SSI is impossible. I will never forget that. But don't give up. I have HCM, Diabetes, and just had major lumbar fusion surgery last year. But I saw a guy on TV missing both his legs and one arm in a wheel chair and he had a job. I feel blessed. God be with you. You can do a lot of things. Most of all keep smiling.

[Angelawoods]

Re: what kind of employment is okay for a hcmer?

I havnt been here for a while...........I had been feeling really

symptomatic for a few months straight............I had one nite I had chest

pains for over 7 hrs. It really scared me I hadnt had burning pain like that

ever! After a visit to my doctor my meds were changed to a higher dose.

The last 2 weeks I have had no chest pains at all. The shortness of breath

has always been an issue but manageable.


When I was first diagnosed I immediately applied for ssi Not really

realizing what I was or wasnt able to do for employment. I got some great

advice from I cant remember who but it was to get in contact with

vocational rehab. That was the best advice I HAVE GOTTEN. I filled out

some forms and was excepted into their program. I start a bussiness

class after christmas. The counselor is awsome I feel like a door has been

opened for me. when I first got my diagnoses I was so consumed with it

I was so upset and very cautious. I didnt realize I could have a life within

reason. I just thought I was going to die like tommorrow. I guess what Im

trying to say is that Im finding my way through this. I do realize some

hcmers are worse than I am but there are some just like me and there

is future after diagnoses. I didnt know that until now. Thank god for this

message board.

Angela

[Angelawoods]

Re: what kind of employment is okay for a hcmer?

Oh I almost forgot im really not a newbie I forgot my password

so Im starting all over.

Angela