Disability due to heart disease

Hi. I have had Cardiomyopathy and Heart Failure since the age of 6 months. Was a very sick baby but not so much as a kid growing up... sure I had limitations and had to take medication but I never felt like my heart disease stopped me from living a full life.

Been through many traumas and scary situations through my life but, yet again, I seem to bounce right back until March 3rd, 2011. My whole world stopped. I went into a VTach storm and my defibrillator shocked me 23 times in a little over an hour. Trying desperately to get my heart rhythm where it needed to be. I was awake and aware the whole time. Felt everything. The nurses just stood there and watched it happen because the only thing they could do for me was happening with my ICD. I remember screaming out if I was going to die can they just hurry it up. 

After being released from the hospital, I tried for a solid month to work. Every single day I was sent home because I literally could not do my job (Compounding medication and IVs). The very last day I was at work, my heart went haywire and went into sudden cardiac death. Needless to say an ambulance was called and I spent a solid two weeks in the hospital.

That said, I know for a fact that I cannot work, physically or mentally. Through the advice of my cardiologist, electrophysiologist and general practitioner I began the disability process. 

Almost two years after my storm, I was approved immediately by a judge in a hearing. It was bittersweet. Awesome that I was approved, awful because I never pictured I’d be 25 receiving disability and unable to work. As mentioned before, my heart disease never stopped me from doing what I wanted with a few exceptions. 

Fast forward to the present (eight years later) I still struggle with accepting I can’t work. Refuse to do so although I know that I physically just cannot do it. Suffer major depression and high anxiety from it. 

When I lost my ability to work, I lost my identity. I’m just kind of floating in life not knowing what to do with myself, who I am, how to become happy with life again, etc. 

Anyone else have the same reality as myself? I feel like I’m the only one in the world that looks “healthy” but is not. Feel like I’m the only one that went on disability at the age of 25 without actually “looking disabled”. If you were to see me in public, you’d never guess that my health is as poor as it is.

I would love to hear from others on here. Especially if your story is similiar. It’s been quite awhile since I’ve visited this website but here I am trying to reach out to my fellow ICD/Pacemaker recipients.

Thank you for reading my story,

Nicole33

 


12 Comments

Volunteering Helps Me

by KonaLawrence - 2019-08-25 02:36:19

Aloha Nicole,
I'm 70 and retired, so in a very different situation than you.  However, since I do not work anymore I have found that I can still feel useful and have purpose by volunteering.  I volunteer with my Buddhist temple, with Hospice and work at the Hospice Thrift Store and I work at another charity thrift store.  I'm certainly not making a big contribution to the world, but it is helpful that I have a schedule of things to do.  Of course, as a volunteer, if I am sick or just too tired, I can skip work anytime.  The organizations are so grateful to have help, they are very kind and considerate of whatever contribution I am able to provide.  You might consider volunteering too.  There are so many, many organizations that welcome volunteers.  Whether it's one hour a week or four hours, two days a week, would be up to you.  If you have a special intertest in helping children or libraries or helping elders, or political groups or hospitals or schools, or, or, or.  There are limitless options.

Please consider this opportunity to make a difference,
Cheers, Lawrence 

 

Thank you, Lawrence

by Nicole33 - 2019-08-25 07:36:22

Hi Lawrence. Thank you so very much for taking the time to share. I’ve tried to sign up with volunterrringin two different ways. 

The first was helping prepare essentials for homeless kids.  Was really rewarding but the organization seemed a bit off. Like something just wasn’t right. I pleasantly declined any further volunteer work with them.

Next, I signed up with ACS. Driving patients to and from their cancer treatments. This, again, has not seemed to work out for me. Any of the assignments I accepted, the patient cancelled their appointment or something else happened.

i get discouraged very easily. Not sure why I have become this way. Guess it may come with frustration.

If I may, how did you find your volunteer opportunities? Maybe I’m looking in the wrong place.

Take care,

Nicole

Defib Shock Storm

by Grateful Heart - 2019-08-25 11:33:25

First of all, I'm sorry you had to go through the defib shocks.  I have a defib and cannot imagine the trauma.  You are stronger than you think!!

Accepting your new normal of not being able to work is key.  It doesn't mean you have to lose your identity, you still are who you have always been.  Probably even more empathetic.

I agree with Kona, volunteers are always needed in all forms.  I volunteer for Meals on Wheels...they are always in need of more help.  Like you said, people can always cancel an appointment but they always need to eat and look forward to the meals.  Some wait at the door for your arrival.  I see you are in GA.  If you google Meals on Wheels in your area I'm sure something will come up.

I too am retired but I go to the gym, take yoga classes and American Sign Language classes which I love.  

Cardiac Rehab may be helpful for you.  It was for me.  Speak with your Cardio and see if he/ she would approve it for you.

Just a few thoughts.

Grateful Heart     

The world needs you Nicole

by Heartthrob - 2019-08-26 11:29:36

Good morning Nicole!

Of course you feel "disconnected" and "invisible" to the world now that you do not work.

But you're certainly not the only one in the world -- there are milllions -- who appear to be in one status when the interior tells another story. This is true for me, though I'm older than you. There are people all around us with challenges, though their demeanor and exterior would never give a hint. Having an appearance that does not disclose an affliction is a bonus: People will not immediately discount you as incapable.

Those people have to prove not only to themselves but sometimes to everyone they encounter that they are worthy. I saw a film clip this week of a young man born without arms who just competed in a triathlon. You can likely find his inspiring story online. There are millions of others.

Since you are asking for input I will say this directly: Dedicate the next few days to exploring ways you definitely can contribute to the world, definitely will be needed by others and can definitely get you on a road with fewer obstacles. Losing yourself in others is, for any one of us, sometimes the truest antidote to despair.

That said, I hope you also talk with a therapist knowledgable in grief and loss.

I have great compassion for you for the sentiments you expressed: "When I lost my ability to work, I lost my identity. I’m just kind of floating in life not knowing what to do with myself, who I am, how to become happy with life again, etc."  But this is what you are right now. Uncertain.

You are a young person facing a transitional time of the kind that many have faced. And you now have a life experience that could be an amazing asset if you volunteer with a person or group of people who also have or are struggling. You will already know how they feel!

There are millions of people who are unable to read and write or use a computer and are terrified because the world is passing them by. Is there a literacy organization near you? Animal shelter? Mentor program for children in foster care? Meals on Wheels? A hospital who needs greeters?

Would a hospital near you be open to starting a support group for young people dealing with health whammies? Think of ways the work you did might apply to a volunteer post.

Lastly, when I had to leave a job I loved, I felt that I no longer existed. Then I discovered that the job was not me at all -- though I still sometimes miss the bustle -- and that "me" is someone I take wherever I go. My path just needed to take a detour into the unknown. 

So go for It. The world needs you -- you just have not yet discovered in what way. But you can and will. There is only one Nicole and we're all welcoming you into the pack that extends beyond a workplace.

 

 

 

Life-defining work

by Gotrhythm - 2019-08-26 12:09:31

Finding yourself "retired" at 33 must make you feel out of step with the world. I mean, the people who understand the challenge are 60 plus.

As for feeling defined by your work--I think that's pretty common, normal really. Whether they are rocket scientists or stay at home moms, that's what people at your stage of life do.

Okay. So much for defining the problem. What is the solution?

Redefine your work. Even though you can't do your old job, there must be something you can do, some skill you can use, even if you only do it for a hour a day, once a week. so that you can say, "I am a _______"

(Here's what I already know about you. You can use a computer, navigate the internet, and write a coherent, correctly punctuated sentence. That right there makes you more qualified for some jobs than a lot of people and I'm sure you have other abilities.)

It won't be easy. If it were easy and obvious, you would already have done it. But I think you can. You will have to think outside--way outside--the box.

There is work for you. Life defining work. Work that you instigate rather than waiting for others to give you. Ideally, some work that makes your disability an asset--as in, you are free to undertake the work because you don't need a paycheck to live.

Don't try to decide whether what I'm saying is right or wrong. Just let these ideas roll around in the back of your mind... and be surprised at what eventually pops up.

Hello Again - More Volunteering Info

by KonaLawrence - 2019-08-26 17:30:30

Hi Nicole,

You asked me how I found my niche in volunteering.

It has been an ongoing process for many years. I used to live in the big city, San Francisco. There were websites run by the local governments and by non-profits that "advertised" opportunities for volunteering. I scanned those a lot and tried out quite a few things. I initially brought my good old work ethic to each assignment. But as you found, some non-profits are disorganized, impolite or otherwise uncomfortable. Of course, in a job, you stick it out. I finally realized that a different ethic was needed. I should stick it out only if it was fun. If not, time to move on. I “moved on” from the local library, a branch of Habitat for Humanity, and many others. For one reason or another they weren't fun.

This may sound self-centered, but it actually is not. My purpose in life these days is to be helpful wherever I can and to whomever I can. Yes, I even stop and give money and a goodie bag to homeless people. But I don't take them home with me. That would not make me happy. I have found that I can do the most good for the most people if I take care of myself first. That is why I volunteer at places that are fun. I'm happy there!

I volunteer at two thrift shops. Lots and lots of non-profits have thrift shops to raise money...hospitals, clinics, Hospice, Habitat for Hunanity, Salvation Army, and many more. There are a "gang" of volunteers in the back room who receive donations, get to open them (presents!), sort, price and put them out. Usually the same folks work the same "shifts", so it's an instant group of friends! I like it. It's not strenuous work, some people sit down most of the time.

I have a retired nurse friend. She checked at a local school about substitute teaching and they said "You're a nurse??!!  Will you be our volunteer, part-time school nurse? Our budget was cut and we don't have one!" She loves it.

I don't have a magic method for finding the right volunteer place for you, you just have to get out there and try them. I even joined a study group at my local Buddhist temple. Sounds boring right? Well it turned out to be fun and I've been going for a couple years! I've joined two or three clubs. Some I've continued going to the meetings, some not. I don't volunteer every day, that would be “a job”. I volunteer as much as is comfortable.  Feel free to Private Message me if you wish.

Good luck on your Adventure,
Lawrence

ICD Storm & its Aftermath

by donr - 2019-08-26 20:29:52

Nicole:  No one mentioned a very probable diagnosis for what you are facing.  It's called PTSD - Post Traumatic Stress Disorder.  Just about the time you joiuned us back when, we had an ICD host out in CO who suffered the exact same events you did - 23/24 shocks in an hour.   He was reduced to sitting in his basement all day, fearful of another series of shocks, paralyzed by fear & watching daytime TV all day.

Most people associate PTSD with soldiers who have their traumatic experience in combat - not so.  The experience can be a severe auto accident, a plane crash, death of a loved one that they witnessed, a mugging,  etc.  Cops, firemen, victims of violent crime can all become sufferers.   It is not something you can overcome alone or by reading self-help books.  It takes professsional help.  It is a long & arduous path to recovery, and you never really recover w/o some sort of what I call "Bias" in your quiescent state.    That is the state you are in mentally when just sitting on the couch w/ your mind in neutral.  It exhibits itself as a heightened state of alertness & reactions to sudden noises or events.  This is called "Startle Reactions."  By your description of your current state, you are experiencing classic PTSD symptoms.  

I know that we exchanged messages back when you first joined - I have not researched my archives to look for them, but I can if necessary.  There are a lot of practitioners in the greater Atlanta area who know, understand & treat this condition.   Have you ever searched them out?  If not, I would recommend it.

Donr 

Thank you

by Nicole33 - 2019-08-26 22:00:23

I thank all that took the time to not only read my story but comment as well. Have a lot to think about and look into. It’s just really hard to reinvent yourself when I liked who I was prior to my storm.

I get these uncontrollable fears when it comes to doing something new. Which I don’t fully understand because I used to try new things without reservation prior to my storm. It gets intense. My mind actually plays scenarios that are incredibly nerve wracking and scary when I think of trying something new.

I have located some volunteer opportunities that are really interesting to me but this stupid fear pops up. That may be part of the reason the other two volunteer positions haven’t worked out but not sure. Should I just force myself do it? The thought alone paralyzes me!

Nicole

The Answer is always YES

by KonaLawrence - 2019-08-27 02:35:15

Hello Again Nicole,
When I was lost after my wife died I finally realized that no one was going to rescue me.  One of the things I decided was that my answer would always be YES.  If anyone invited me to do anything or any opportunity presented itself.  My answer was YES.  Sometimes it was a bust, but I always met nice people.  Should you force yourself?  Well, you know what my answer was....
Good Luck,
Lawrence

Fearless

by Heartthrob - 2019-08-27 16:38:24

Hi Nicole.

A final thought, one passed to me by a grief counselor I see occasionally. It is not a term original to him, but one that now means a lot to me: "Fear is a choice." Fear is usually about something we feel may happen in the future. But whatever it is, it may never happen!

Fear is not stupid, but may be entirely purposeless. You write: "The thought alone paralyzes me!" Remember it is a thought, not a reality. Always remember you can ask people for help, wherever you are, whatever you are doing. There's a lot of compassion out there.

 

Hi Heartthrob!

by Nicole33 - 2019-08-28 07:16:09

Thank you for sharing again. I agree that fear is a choice but it can also be completely out of our control. There have been times where I am scared beyond words and in my mind it seems irrational. Frankly, it just doesn’t make sense a lot of the times but it’s bigger than me. It’s debilitating!

I am trying my best to ask for help. Reaching out to you and all the others on here. There is no one in my life that I can talk to that understands other than the wonderful people on here.

Disability

by Chowchowma - 2019-09-14 23:25:59

My friends and family have been pressuring me to apply for disability. I'm 57 and mentally not ready. My symptoms appear to be under control, the ICD paces me regularly but thankfully no shocks.  And if I do say so myself, I look fine. I do love working but it requires SO much energy. My spare time is spent recuperating from work. I regularly feel this is not how I wanted to spend time. 

My thoughts, embrace the change. Healthy or not, life offers no guarantees. Spend time with those you love, find ways to embrace gratitude and serve others. It will make you feel even more fabulous.

You know you're wired when...

You make store alarms beep.

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