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My story:

This is something very personal to me and I thought that I would somehow be able to do this alone, but the more I looked, the more I became very frustrated. Even at my heart and ICD appointments I asked the doctors/residents/nurses/technicians, and they agreed that there is a need to bring people like me together, but almost impossible for it to actually happen.

I have a defibrillator and hypertrophic cardiomyopathy and I feel alone with what I'm going through. Yes, I have family and friends that care for me, but they don't truly understand what I'm going through or how I feel with my implanted defibrillator or even heart problems. I just wish there wasn't so much red tape and HIPA (Health Information Protection Act) that is getting in the way of finding people the same or near the same age as me in Saskatchewan to talk to, understand, and care about how, not just I, but others like me are to support each other. It's hard to talk to people about my ICD, because they just don't understand what it's like to have an implanted device if they, themselves, don't have one. The "support" group (Livewires) that is supposed to help and be actually supportive, is fully of older people that only care about travel insurance. (I'm not trying to be disrespectful, but they have families and possibly grandchildren that love them which means their priorities are more focused on retirement, traveling, spending time with their children/grandchildren, etc.. Another thing is that, from the people that I came across, they were not born with these problems and/or diagnosed later in life.) What about people like me, obviously they don't seem to care about the kids, teenagers, adolescents, or young adults that are more often than not, getting implanted devices put in because of their conditions. I'm more concerned with the fact that are medical implant companies developing new technologies such as: batteries that last longer, or batteries that can be recharged without operating? I envision a group that would bring together patients with implanted devices and their families. Helping families with children, fathers, mothers, sisters, and brothers, better understand what we go through each and every day. Helping to relieve and reduce fears and worries that one may have about differing equipment like airport scanners, working with vehicles, or even what kinds of job we won't be able to do because of the risk of shock. I would even like to see what kind of opportunities we have to help educate people about individuals living with implanted devices; what career opportunities we have to work in the medical field regarding people with implanted devices working on others with implanted devices. Having people from differing jobs come as speakers that have specialities with individuals with cardiac problems and implantable devices, to help bring support under one roof and answer any questions that a patient and their family/friends may have. People that I had to find on my own time and sometimes traveled several times to see, that may help include: cardiologists, implantable device spokespeople, dieticians, and fitness educators just to name a few. It would be a great help if there was an actual group that individuals that were getting an implanted device could go to and experience what others had to. All this would have been great for me to have because I still have questions and concerns that are being left unanswered. I don't want to see others struggle and have to find out things on there own, not knowing where to start or what to do. These groups don't have to be formal, but they do have to be empowering because we are young and we are the future, and this future is bright if we all help reduce uncertainties, worries, questions, the negative stigma, or even get information around implanted devices. #ChangeTheStigma

Thank you to the people that have gotten this far. I wrote this one very emotional late night, and now hopefully there will be more awareness and quite possibly something positive will come out of this. This is, what I believe to be another step in the right direction for me.

I know that not everyone is like me, but I hope that together we can make it that no one has to go through chronic illness alone.
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http://thethyroiddamsel.com/latestblogs/notjusttired

Fantastic Guest post from Not Just Tired! Can a change be good for #chronicillness

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