April 27, 2020 at 10:12 am #24806
Often since my PH diagnosis, I have been told that I have changed. I certainly will agree with this statement. PH changes not only my life but my loved one’s lives, too.
This week I discuss this in my most recent column. I want to know how PH has changed you or affected your life. Do you feel like these changes been positive? How do others react to these changes?
Let’s talk about it.
April 27, 2020 at 3:54 pm #24822Colleen SteeleKeymaster
Beautiful column, Jen!
Cullen was just a little guy when he was diagnosed so it’s hard to say if he might have been a different person had he not become ill. He was always my little man, wise beyond his years, and that definitely increased when PH entered his life.
For the most part I think PH and transplant changed my family in a positive way. We appreciate the little things in life and have a high level of compassion that has developed through experience. The saddest change has been the thick skin we have grown in order to deal with frequent loss. So many young friends have died from PH or transplant. The pain and grief is always there yet we keep pushing forward. That is a strength that PH forced us to develop and it bothers me that my children had to emotionally mature to that level at such a young age.
April 27, 2020 at 4:43 pm #24827
@jenc and @colleensteele I think that it has changed me for the better in a lot of ways. It has made me a better advocate for myself and others and has given me the confidence to talk about my conditions in an open and honest way. It also has allowed me to connect with so many people that I may never have had the chance to connect with. But, there are ways that it has changed me for the worse and I do have to work on these parts of myself. Illness and pain has made me a lot more irritable and argumentative, especially when it comes to relationships. It has made me close myself off sometimes from friends or family in fear of being left or fear of being a burden. A lot of that is just my own anxieties coming through though.
April 27, 2020 at 10:08 pm #24833DawnParticipant
Great topic, Jen. Some of the ways ph has changed me (that I don’t like) are less physical strength & stamina, needing to ask for/accept help – which has always been difficult for me, feeling like a burden, the ‘brain fog’ you mentioned Jen, my fear of the ‘what ifs’ when I let myself go there.
Some of the good changes have been trusting my instincts more, speaking up more with doctors, feeling that I am stronger emotionally than I thought I was, accepting how much people care and letting it ‘in’, finding deeper trust in my faith, being more deliberate in letting people know how much I love them and how important they are to me and how much I appreciate them.
April 28, 2020 at 6:16 am #24836
@dawnt I can relate to everything that you are mentioning here too. There are many parts that I don’t like but then there are a lot of emotional changes that have happened for the better. These changes have allowed me to adapt to more hardship in my life and have allowed me to grow a deeper sympathy and empathy for what people go through. Not everyone in life reaches this kind of compassion, and I’m glad that I have that.
April 28, 2020 at 11:03 am #24844
Thank you, @colleensteele. As always, I appreciate your kind words and support.
You bring up an important change that we all tend to develop as we experience the loss of many PHriends, all too soon. I always thought that my daughter had to grow up too fast and built myself that she lost a part of her childhood because of my PH. Thankfully, she feels the total opposite. Therapy is helping me with these issues.
But, as such young PH kids, they do grow up fast, and they are inspiring and my heroes through this journey. Watching some of these PH kids deal with things that I have a difficult time dealing with. They are like champs, and nothing is too much for them. Their resiliency shows through time and time again. These types of difficulties are not “normal,” and I credit the parents and caregivers for this.
As a parent of a PH child, were you, and are you still amazed at how Cullen reacts to things thrown at y’all?
April 28, 2020 at 11:08 am #24845
@brittany-foster, I can relate to the negatives. I am working on these in therapy, thanks to you. I find that I am not as patient as I was pre-PH, and I find that my emotional state and frustrations often get the best of me. I think that working on these issues, which is an ongoing process, is critical. I have noticed that I have improved a little in this area. I also think this lockdown is not helping either.
Do you find that to be true? Or have you experienced the opposite?
I do agree that your advocacy, not only for yourself but for others shines through daily. Your heart is amazing, and your inspiration and strength help so many who look up to you, like me.
April 28, 2020 at 11:16 am #24846
@dawnt, I can relate to not allowing others to help you. I was a caregiver, worked in nursing, so I still struggle with this most days. One prime example is my mom coming to visit. I always have the mindset that I should be taking care of her. When she would visit after hospitalizations, I would not want her to cook or do anything in my house. I did not want her working. Once she made me food at my sister’s and brought it over. Last year, just after a hospitalization, she came and stayed a few weeks. I gave in and let her tale over my kitchen for almost 2 weeks. Well, the first week, then I started to kick her out. But letting go of that and allowing her to help, she enjoyed and needed. Plus, I found that I healed much faster because I was resting.
Another meaningful change you mention is faith. Not only has that impacted my faith, but my hubby has a stronger faith as well. These are all important steps and a work in progress for many of us dealing with PH. Thanks for sharing.
April 28, 2020 at 1:54 pm #24854Carol VolckmannParticipant
Some of the more difficult issues I felt when diagnosed with PAH was not feeling I was in control, being there for others, having to rely on others for help, not able to do all the physical things I had done all my life : skiing, mountain hiking or just having the ability to walk up an incline. Sex has pretty much been non-existent due to the Scleroderma that caused my PAH, not having control over my bowels- guess that sums it up.
On the plus side, learning how to let go of having to be in control, allowing love ones and friends to help me to understand they are there for me and to embrace that, asking for help and having a husband who not only understands but takes sn active role in my well being. Not taking any part of life for granted and being there for others to support, understand and encourage.
Thanks for listening with love.
April 28, 2020 at 2:49 pm #24861
@cdvol3gmail-com I can relate to a lot of the feelings that you have expressed. On one hand, it is hard to think about how much this has changed our life. But, it also has given us a new appreciation for things that many (including our past selves) may have taken for granted. There’s many parts of myself that I miss such as being able to play ice hockey and the carefree way that I used to live before. But this taught me to be creative in how I participate in things I enjoy so that I can still find joy in them without risking my health.
April 28, 2020 at 3:40 pm #24864
@cdvol3gmail-com, I can appreciate and relate with you on most of these. It certainly changes us in more ways than one would ever imagine—the stamina and ability to do any activity except a little yoga and stretching at times.
When we think hard about this, so many things pop up. But the best for me is the positives that PH has given me. Without PH, I would not meet each of you amazing people. I would not be as resilient and taking the time to appreciate what I do have.
I realize that PH limits me from most strenuous activities. Sex is a big one, and one has to be creative in this area too. But, having such great support at home makes it all better. Wouldn’t you agree?
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