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So happy I came across you. What an inspiration you are. How very uplifting. Thank you! So validating.

I was blind sided in December 2019 with a congenital heart condition that turned out to be severe and complex. Even for Mayo! I was misdiagnosed for 7 years prior with altitude sickness. Ended up having major open heart surgery. The condition is not curable, but Mayo fixed the issue that was inevitably going to end my life. The OHS caused an arrhythmia that then went misdiagnosed for 2 years. Had a cardiac ablation to fix the arrhythmia in June 2023. The OHS was April 2021.

All of the above traumatized me. I already had PTSD prior. This only added to the anxiety monster.

Since the OHS, the pain has not left me. Now that I'm cleared cardiac wise, I have been addressing the chronic pain caused from them splitting my chest open. My nerves and bones and muscles and tendons were injured from the surgery. I can no longer work.

Now I am scheduled with Mayo for them to remove the sternal wires in mid December. I also have a procedure with my neurologist end of November for what's called a Stellate Ganglion Nerve Block. So, here we go again with panic attacks over surgery and procedures. On top of the moderate to severe anxiety, I get panic attacks about trivial things or things I perceive 2 to 3 times per week. As my therapist says.... this anxiety has a mind of its own and has grown huge.

Sorry for being so long winded. I am just happy I came across you. This crazy heart and chronic pain journey has been so dark and I have slowly, but progressively turned into a person I no longer recognize. So much goes along with all of this. Isolation, defeat, depression, anxiety about having anxiety, constant fear, shame, guilt, relationship problems, self doubt, self berating, sleep issues, self esteem issues, weight issues, not being able to complete tasks, etc, etc.

How am I supposed to be able to accomplish the things I dream of when I'm in so much pain? The mental health side of it is a monster in and of itself, yeah?

With love.....

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Replies to "So happy I came across you. What an inspiration you are. How very uplifting. Thank you!..."

Hi Big hearted
I have a major problem with same anxiety with medical issues.
When I was 5 I was brought to a hospital ER because I fell through
A french door glass panel. My arm was pretty cut up. I remember being awake and watching the Dr
Sewing my arm with black thread.
To this day I refuse any surgery
As I am petrified!
Note, in my life I had knee replacement surgery but was a general anesthesia.
Dr wants to do fushion...nope..I know what I have afraid I will be
I take prednisone , only drug that frees me of pain.
This post is an abbreviation of the past 71 years

Hi Kim. I'm happy to hear from you. Panic attacks are hard to deal with. You know they will sneak up on you even when you just think about a triggering thought. For me that was about spine surgery. Well sort of.... spine surgery was new territory and I found myself in the position of knowing that if I did nothing, the condition would progress and disable me, and also being afraid of the medical solution because of how I perceived it as where I had no choice. To make matters worse, I had a problem that was that misdiagnosed for a couple years, and surgeons did not want me as their patient for their fears of a poor medical outcome. I had to learn to advocate for myself in spite of all of that, and after 4 months of daily panic attacks, I asked myself why I was doing this to myself? That question is the key to my turning point where I began to question everything in relationship to the past experiences in my life that were frightening. I decided that I could change how I looked at things and by increasing my awareness, I would not loose control to fear or let my fear choose my future.

So I started a list of the major events in my life that were related to fear and why those events caused fear. I was looking for clues. I knew that I feared pain, but I had also seen other people be able to handle pain and I wondered how they could do that. I also know, that I can feel other people's pain and can visualize an experience from someone else's description. If I can physically feel someone else's pain, then I was doing that in my mind although this pain was very real and caused as much stress for me as if it was my own. I also know that fear and pain are related because fear can escalate pain and make it so much worse. These relationships are rooted in survival strategies and happen even though we are no longer running from predators, but our mind is still perceiving a danger with some stressful event.

To begin with, I would ask why does this medical problem cause guilt? A congenital heart problem is something that happens incorrectly during the development before birth. That isn't your fault at all. I learned a lot from someone I knew with a very serious congenital heart malformation and when I was struggling with my own anxiety, I read about his journey through his heart surgeries. This video says it in his own words...

While I was waiting for my surgery, I challenged myself to try to lower my blood pressure. During the feelings of panic, my blood pressure would shoot up. I had a blood pressure cuff and took a reading. Then I put on my headphones and listened to inspiring music and I made sure to breathe in time to the music with slow deep breaths. I found I could lower my blood pressure by 15 points! So this became my comfort exercise as something I could do to help myself when I was stressed. This was the music I chose, a master work from the guy with the heart issue who was a very gifted musician, and knowing what he went through and that he still achieved excellence in his accomplishments and his music gave me a bit a faith that I too could do this and stop the fear in it's tracks. The beauty of this is once you establish this pattern for yourself, you can do it anytime you need it, even if you only hear the music in your head and breathe to it. That worked, and it was amazing to conquer fear and unravel it. There will be a reason behind it, and when you understand all of that, the fear looses it's power.

Kim, I do like the name you've chosen for yourself...
Big Hearted Warrior... that says to me that this is who you are and that like a warrior, you can gain control over the enemy who is in this case, fear. Make friends with your enemy and learn about it, and after that you can have peace.

Your thoughts?