My CGM has been awesome because I can see where my sugar is, but more importantly can have a prediction if my sugar is going up or down. My pump has been a lifesaver. With the closed loop technology, it takes some of the work and some of the worry out of managing diabetes, because it does the work in the background and lets you free your mind to do other things. The website diaTribe has been awesome, very nonjudgmental. All the people who write on the website are diabetics themselves, wonderful nutritional information, a lot of behavioral information as far as how other people feel, frustrations, that type of thing.

The most website that I found that was very helpful was actually my doctor’s website. I belong to… He’s part of a practice, it’s called MetroHealth, which is in the Cleveland area. And their website is very informative. Gives a lot of tips, gives a lot of resources and ideas. And it’s pretty good. You could type any question and they’ll answer it. So basically, I would say my doctor’s website.

I have found the Fitbit works wonders. I’m able to keep up with everything that goes on as far as my heart rate and my exercise so that allows me to see if I’m having any issues. Usually, when I go to the doctor and they check my heart rate, it’s exactly the same as on my Fitbit so that keeps me kind of knowing where I’m at, where I need to be.

Facebook has been my biggest resource, and that is because I belong to several PH support groups. Plus I started a diastolic dysfunction in group 2 and 3 PH support group. And everybody in these groups gets that sometimes doctors will say, “Oh, it shouldn’t be causing that symptom.” You get on the group, and everybody in the group has the same symptom. We talk it through. We learn how to figure it out. That’s been my biggest save.

Some of the online websites that I get on is National Health Service, American Heart Association. Those are the main two. I keep up with clinical trials and there’s a World Health Organization, I read up on that. All of those allow me to learn about my disease as well as learn other people’s stories.

I actually have not found any great resources for my condition that causes my underlying heart issues, which is scleroderma. I have tried to reach out to a few of their networks, but it doesn’t just quite help. The only thing that has really been a great support for me is finding out that a neighbor about my same age has the same disease, and so having her to talk to and text with has been great. If I could have taken a magic wand maybe 10 years ago and created that relationship maybe by a texting mentor, that would have been great. But I don’t know of an app right now and hopefully people can help others know more about things like that.

I think the most valuable resource for me has been Facebook groups for other patients that other people that have heart failure or heart conditions, who’ve had heart attacks and then some of my other health issues. It’s just amazing that people can help everyone with so many things that you can’t possibly burden your doctor with. Today, I was online asking about the compression stockings that my doctor had said I should get. And so, he didn’t really say any brands or what amount of compression I should get. And so, I just hopped on to my Facebook group and then was just putting it out there, “What do you buy? What brand do you buy? What strength do you buy? Do you buy the thigh high or do you buy the knee high? You buy open toe or closed toe?” And then, you just get a variety of responses and a variety of experiences. And there’s just really… It’s just invaluable that you’re able to do that. And also, for your mental health, that you can say, “I’m scared. I’m upset. I’m sad.” And then, that we can help each other out also when things happen to each other, or somebody passes away, or is getting a heart transplant, or things like that. So, I would say that’s my most valuable resource is Facebook, the heart groups. And then, also, the American Heart Association regularly puts out a newsletter that’s been invaluable to me also. I think that’s it.

I find the Notes app on my phone is great for taking notes. I also find the KanTime app that we use for charting for our nurses is a great resource. These also help if you’re going to a doctor’s appointment or a specialist, or even the ER helps to be able to have the information, charting information, as well as notes on your phone and accessible so that you don’t have to worry about taking a notebook or paper with you. I also find that apps like Facebook groups are great resources to gain information and ask questions. So those are wonderful tools and resources.

I think probably the biggest one that has been a help for me has probably been groups on Facebook. I belong to a number of them. There’s a woman’s heart attack group that I belong to that’s been really helpful, especially dealing with women’s issues. And a heart attack, especially being under the age of menopause, there was a number of issues that I had to deal with that maybe some other women didn’t have to deal with and that was extremely helpful. And just kind of the camaraderie and knowing that there’s other people out there dealing with the same things I am. It’s not necessarily even for medical advice so much as just, like I said, kind of the camaraderie, knowing that there’s other people out there dealing with the same thing and I’m not alone.

Honestly, just life has been my biggest resource because I grew up in a household where there were bad heart issues and it affected how we all lived our lives. Things we could say and do and eat and places we could go and activities that were acceptable because my dad’s heart was super bad and then he wound up passing away when I was just 15. And not long after that, then my mom’s heart problems started kicking into high gear and she almost died three separate times. So, me just living a life since birth, being very aware of how you should take care of yourself and your heart, has honestly been the biggest help and source of knowledge.

I do have a cardio EKG heart rate monitor, which is really helpful. I also work in cardiac, so I can take my EKGs if I feel a little funny sometimes and have myself or my coworkers review it, because I work in cardiac.

I use a lot of technology. I take my blood pressure twice a day, which allows me, with my cardiologist’s assistance, to control my medications and not get overmedicated and drugged down with the beta blockers so much. I use, actually, two portable ECG devices, one via the Apple watch and one via a program called AliveCor. They allow me to see what’s going on where I feel the palpitations or the uneasiness, again, sharing that with my doctor and being able to make some adjustments. I had mentioned previously websites, forums, particularly forums for heart failure and ICDs. There’s now several Facebook pages with the same conditions. It allows me to interact with others who are experiencing it and learn from their successes and failures.

I do a lot of research on my disease, coronary artery disease and heart disease. New ways to make things better or try and improve my health. I follow the American Heart Association and their recommendations, other resources, and readings and articles on websites and stuff about it, and what other treatment may help to improve my lifestyle.

Normally, I just go with what my doctor says because I trust what she’s telling me. I will use the internet from time to time, to keep track of everything, anything new that might help me, any new medications. But normally, I just speak to my doctor and listen to what she has to say.

LVAD Support Group on Facebook. You can read through where people’s going through the same things that you are, and it makes you feel not so alone.