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How has PH changed your life for the better?
Is there any area of your life that has improved since you were diagnosed with PH?
Maybe you are using a creative talent you wouldn’t have otherwise spent much time on. Perhaps your PH diagnosis also pointed towards a coexisting condition and thanks to treatments, that condition has improved. Have you made good friends through, or perhaps, like @mrperry009, you met the love of your life and got married?
What unexpected happiness, big or small, have you experienced because you were diagnosed with PH? Help us picture a ray of sunshine through the storm.
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16 Replies
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Colleen, good thought provoking topic. The only thing I can think of right now is making wonderful PHriends via this forum!
This is one I’ll have to think about…
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@DeLois Tweedy the friends you have made certainly count! I hate giving PH credit for anything but living with the disease does make people even more compassionate, empathetic and strong-willed then they were before…and those qualities make excellent friends! It makes me want to suggest to people outside our community that if they want a quality friend, seek someone who has PH…you can’t ask for better!
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Yes, I agree @DeLois Tweedy , our supportive and close-knit forum members are a huge perk. Would you say you’ve found new hobbies or spend more time doing something you’ve wanted to do since your PH diagnosis?
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Hi Colleen,
I once told the doctor that PAH has been somewhat of a gift. Needless to say, he looked at me like I was crazy. But there are several great things that have happened. First has been this forum. Another wonderful thing that happened was because I was stuck at home the year before and then all through Covid I filled my time on Ancestry. Investigating my ancestors solved some serious family mysteries. Brought new family into my life. One cousin who I met on Ancestry came to visit and decided to move here. She and her husband now live a few blocks away. That’s a treat.
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@Sally Hoffman I love this! In fact, I think it would make a great column. Would I be able to interview you in the future about how you PH linked you to your ancestry? It won’t be for a while. I’m taking a leave of absence from my column until I am settled in NJ but I would really love to write about this!
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Hi, @Sally Hoffman. I LOVE that you have worked on your Ancestry. So cool that your cousin moved close by, and now you can visit and catch up. Did you find anything that you weren’t aware of while researching?
My cousin is working on ours on my late grandmother’s side. Last year, while visiting down south, I enjoyed reviewing the information and sharing what I knew to help fill in some blanks.
That will be such an intresting read, @Colleen Steele . I bet others will be inspired to do something like this, too! I have two close PHriends who have been working on their’s too.
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It has made me acknowledge my mortality and get all of my life in order so that my children aren’t burdened with any surprises.
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@Maryann Winters this is a very good point! Although it’s hard to think about and even harder sometimes to tackle, getting our affairs in order in something really everyone in and out of the PH community should try to do.
My husband passed in April and God love him, he was not good about discussing or planning for the what-if’s. He found it too emotional so he kept putting it off. The what-if happened and there have been a lot of struggles getting his estate in order among other things.
The only thing I knew for certain was that he wanted to be an organ donor, and he was!
What you have done is a very loving thing for your family that they will appreciate a “LONG” time from now!
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Hi @Maryellen Ramstack, although these things aren’t fun to do, planning ahead is so helpful. I worked in hospice before my diagnosis. From my experience with patients and my personal experience. when this is done, it takes so much pressure off those left grieving.
Thanks for sharing as this is something we could all learn and grow from.
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@V.R. Peterson is having technical difficulties and asked me to comment for her. @V.R. Peterson maybe you were trying to post as we were switching to our new platform. Please let Jen or I know if you continue to have problems.
Because of CTEPH, my son met a woman who had some PH training while she was training to be a nurse. Not only did she save his life by finding a competent PH specialist for him through her medical contacts, but he also fell in love with and married her. This year, they celebrated their 7th anniversary.
As for a benefit for me? I’ve met so many people who cared more for complete strangers than most people care for their friends, people who started out as PHriends and became friends in every sense of the word.” -
@V.R. Peterson friendships are the best thing that can come from having PH or being a caregiver, but when love blooms from it…even better! Men sometimes exaggerate how their wives saved their lives, but your son’s wife literally did! Such an inspirational love story!
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What a wonderful discussion topic, @Colleen Steele .
I also have enjoyed reading through others’ responses. For me, I say hands down, my exteneded PHamily here in the forums and online. I’ve had the opportunity to meet several in person, too. It’s crazy how complete strangers end up knowing more about my daily struggles than my blood relatives at times.
I’ve also found my voice. Nope, I’ve never been quiet. But some would be surprised to learn that I was considered the “quiet” sister between my two sisters. So, I’ve found , my voice to help spread awareness and help others. I’ve also learned that I’m stronger than I think and can get through the darkest seasons, especially with the love and support of my PHamily here and around the world.
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Since my PH diagnosis, my life has improved 1000%. I didn’t really have a life before that because I was really sick for a long time. I could barely walk and I slept all the time. It makes me angry at times that it took so many years to realize something was wrong and get a diagnosis so I could be treated. I missed out on so many things However, I usually feel so much better than I did before, and I can do all sorts of things. It’s amazing what I can do if I can stay awake. Lol I fully appreciate every day, especially the ones where I am able to run around all day. I always feel like I am trying to make up for lost time. I still hate stairs and inclines of any sort.
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@Cindy Moser I do not have PH but on a smaller scale I can understand what you are saying. Whenever I get really, really sick, then start feeling better I get a burst of energy I wish I could always maintain. I think being sick reminds me not to take life for granted. Get up and do things when I can!
It sounds like PH treatments have helped you tremendously! May they continue to do so!
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Hi @Cindy Moser, yes, ma’am, I, too, hate stairs and inclines! I’m grateful my condo doesn’t have stairs. I tend to look up at the stairs as it’s this massive mountain I have to climb. Two of my neighbors/friends have stairs, and I can only visit them at their home on my best days. Then, I still take it slow and take a break halfway up,
I’m grateful you have done well with your PH treatments. Unfortunately, you were sick for so long with no diagnosis. It’s not uncommon, sadly. May you continue to feel better and enjoy each moment of every day, my PHriend!
I, like @Colleen, tend to run and then burn out. My therapist tells me often to try and pace myself better. I , too, need to find a balance, Colleen. Cindy, do you try to balance so you have more feel better days?
Would you like to share your PH journey to help traise awareness next month? If so, send me your email, or email me at [email protected]. I would love to have you partcipate. I’ll also tag you in the post with a little more details.
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@jen-cueva , yes, I do try to pace myself. That is one of the most important things I do to keep going. It has been a process to learn how to do that since that’s not how I operate. I try to use my energy wisely. It is a challenge to keep up with my son, who is in 9th grade, and my grandchildren. My son is active in 4H and ROTC, and he races with the Oceanside Outrigger Canoe Club. On days when there are events, which is most weekends, I try to make sure I walk slowly (slower than usual), and bring a pillow and a blanket so I can take a nap. Although I don’t always use oxygen, I do monitor myself and bring my portable with me in case I need it. I try to plan ahead and prep for whatever is on the calendar. Sometimes, it takes forever just to get ready, and often that’s the most exhausting part of going out. Usually, things don’t go as planned, but I try to be ready! After a busy day, I feel EXHAUSTED. Often, it takes a few days to recuperate. <div>
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About sharing “my story”, ummm…. Sure? What should I talk about? I have so much to say yet I don’t know what to say…..
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