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30 Days of PH: I Slowly Began to Accept My New Normal
This is Terra Carter’s: Her twin sister was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) more than 10 years ago. Terra was tested and showed no signs of having it, so she carried on with her “normal life”: exercising, working multiple jobs, and getting tattooed.
In 2016, she started to have random syncope, or fainting, episodes. Her doctor thought it was anxiety. Yet in 2020 the episodes became worse. She was sent to a cardiologist who believed a pacemaker was the solution. Terra then asked for a referral to get a second opinion, but was refused. Fortunately, her twin had her yearly checkup and explained to her doctor what was going on.
On Dec. 1, 2020, Terra was diagnosed with #IPAH. At first, she was depressed and angry. Her dogs, Rocky and Liberty, truly kept her from feeling like my life was over. Slowly, she began to find myself and accept her new normal.
Terra admits that she has treated IPAH like the elephant in the room, not wanting to talk about it. Now she wants to share her story, to help others talk about their rare conditions without fear of judgment.
Terra, we are so proud to feature you!
Now back to our PH Community. Do you identify with Terra’s words? How do you feel about talking about your disease to others?
Terra’s story is on our Instagram! Go check it out and do give us a follow so you don’t miss out on any #30DaysofPH stories. We have so many more stories to discover!
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8 Replies
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Thank you, Terra, for sharing your story. Because you shared your story, I know that many others will find it helpful and hopefully open up about their PH.
Depending on how well I know someone, I often find how much I open up about my PH. Does anyone else relate?
When I was first diagnosed, I didn’t talk about my PH as much. But most of my closest friends knew as I had oxygen and minimal mobility at that time, so most knew that something was going on.
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If there is one thing PH patients know how to do, it’s advocate for themselves and others. So glad Terra’s sister went to bat for her.
I love how she talks about how much her dogs have helped her through her diagnosis. Many in the forums feel the same about their pets. I know my family does.
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True, @colleensteele, I find that most in the PH community learn to advocate daily quickly.
Yes, we love our fur babies here in the forums. Our Sasha is adjusting to condo life and unsure when she hears a baby crying or a child playing nearby. But she’s undoubtedly a nice snuggle bug for naps, though.
Who else has someone in your family who stepped up and helped advocate for you? For me, my husband, Manny, is my number 1 advocate. I appreciate him and miss him when he is not around.
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Seven years ago when I was <span class=”kqEaA z8gr9e”>diagnosed</span> with PAH (CTEPH) I was told that my life would undergo a dramatic change. It did and even today I have troubles accepting my new normal. It seems I have gone through about three levels of adjustment: the early stages when I was just on oral medications, then partial support from portable oxygen concentrators and finally on continuous supplemental oxygen for the past 30 months.
Some days I feel angry about what happened but that is an emotion that is temporary. I have come to accept, even brag, that I get around pulling an oxygen tank. As we move out of the pandemic friends are beginning to return to their travels and other activities. At least my wife and I have done a lifetime of travels before now.
There are two things that I keep in mind, attitude and determination. I was trained from an early age to achieve so being restricted I cannot allow my attitude to be hard on myself. These forums just reinforce my belief that those of us with PAH are like airmen in combat, our mission is to make the best of where we are.
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@ripple76 well said! My son believes strongly that keeping a positive attitude has been as key to his survival as his treatments and transplant has been. But he has also tried to approach life with a realistic frame of mind. For example, he doesn’t hold himself to accomplishing things by a certain time. Slow and steady has always won the race for him and he is fine with that. I’m always impressed by his ability to think like this in a society that is all about getting ahead of the game and accomplishing as many things as possible all at once.
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Hi @ripple76, you share such true words. Our attitude can make or break us, literally. I, too, believe that my mom and her determination as a young child continue to carry on in my mind and attitude.
I love that you compare our forum members as, ” like airmen in combat, our mission is to make the best of where we are.” Manny, my husband, was an airman in the Navy when we married.
@colleensteele, I love you sharing how impressed you are with Cullen’s attitude. He is such a strong young man. I am confident that he, too, would credit his upbringing for this outlook. I often remind myself that I may be slow but using that slow steady is key.
Thank you both for sharing how you relate to Terra’s story. Stay safe and keep such positive attitudes while remaining realistic.
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Hi Terra.
So glad for you that you have someone in your life that can offer you support.
I sometimes go through days of not wanting to talk about it or live like I know I should to keep myself healthy.
It’s hard sometimes but one day at a time.
Thank you for sharing your story.
I appreciated reading it.
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I love seeing the support from our members on others’ PH stories. You certainly are some of the best. I’m grateful to be a part of this amazing group. It makes my heart happy to see you support others while struggling with your own journeys.
I know that Terra will appreciate your kind words, @s-steppins. I hope that you are having a great week.
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