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Who Were You Before PH?
I’m not asking this question to make anyone feel bad but to remind everyone that who you were before PH is as important as the person who you are now! Who were you before you were diagnosed with PH? What were you interests, hobbies and goals? How did those days make a positive impact on the days following your PH diagnosis? What do you miss but think of fondly?
My son was very athletic and probably would have pursued soccer and baseball throughout his school years. He doesn’t talk about his athletic days and doesn’t like old photo’s of himself playing sports. I understand the feeling of loss that he has experienced but I believe that those days are still a part of who he is now. Every moment of our lives count and contributes to the person that we become. Don’t let PH steal your memories!
On a positive note, my son was always mature for his age and a deep thinker. PH enhanced that part of his personality even further and it’s made him the intelligent, thoughtful person who he is now.
Share your thoughts on this topic. We would love to hear your story!
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31 Replies
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I actually think I wrote a columns about this awhile ago! I will have to look back and find it. It was about my athletic days and what sports and playing hockey taught me in my life. I will never forget the discipline that sports gave me. Looking back is really difficult for me too and I can understand what your son might go through emotionally when he looks at old sports pictures of himself. To me, my hockey days were the strongest days of my life. My body looked COMPLETELY different, my face was different, my smile was different. Honestly it was my entire life and it was something that I also wanted to go to college and play but my health unfortunately had other plans for me. Many of my doctors will state now “I don’t know how you did it for all those years without something serious happening” and I honestly have to thank WHOEVER is out there watching over me because it’s true that I am lucky I made it as far as I did in sports without a serious complication.
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Brittany, now that you mention it, I remember reading that article! Sorry, I didn’t mean to duplicate your topic. I happened upon some old pictures of my son in his baseball and soccer uniforms. They made me smile but I don’t think my son appreciates them. PH has stolen so much from him. I hope some day he can at least regain his appreciation for what he was capable of in the past.
He could do sports now but he feels like it’s too late. In his mind if you didn’t play throughout school then it’s opportunity lost.
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Hey Colleen,
no need to apologize at ALL! It was a column post that I had created awhile ago and I don’t think we ever actually discussed it much in the forums before but it’s a really good topic to bring up. I struggle a lot with moving past who I was before being diagnosed with all of the things I’ve been dealing with recently. It takes a lot from us (even though we gain such a different perspective). I get what your son must be going through with sports though. I feel like once it has been stopped for so long it almost feels like it’s another thing we lost. Not sure if he feels the same way, but that’s how I view talk about ever going back to hockey. I just know I wouldn’t be playing at the same level I used to and that just is hard.
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I can only imagine how you must feel. It must be so hard not to think about what could have been. The truth of it is, it really isn’t fair. Saying this doesn’t make the loss any easier but what I tell my son is that since giving up sports, he discovered other talents and gifts that he might otherwise not have come to realize.
So how are you feeling since getting out of the hospital?
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Let’s take some time to reflect fondly on our past. For a moment let’s push aside our grief for what was and celebrate the memory of them. It would be a waste to forget what we used to do because we can’t do them now. Out past is as much a part of who we are as is our present. Be proud of your past accomplishments and hobbies! Share the memory of them with others.
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In my younger days I was in very good shape, but had to be because of my hobby/work dog mushing. I gave that up before PH and don’t miss it.
I was a driver/guide for a motor coach company back in the late 80’s to mid 90’s. It was fun, but didn’t pay much. Was thinking about getting back into tourism when I retire, but decided not to. Most of the passengers come off of cruise lines where there is a lot of sickness. Even back then we had hand sanitizer all over the place and everyone used it like during COVID. My immune system is in the toilet and don’t want to get sick. I would probably have a hard time moving luggage around too.
I have been driving my dump truck around for the last 25 years. PH hasn’t hurt me too bad with that. I can still keep up with the best of them.
I miss doing solo road trips with my Harley. I have lost so much muscle mass, I don’t think i could pick it back up if I dropped it. Since I spent several days in the hospital this winter I feel GREAT. I am able to be much more active than before. Hopefully, now I can get back in shape and start riding again.
I try not to let PH or cancer get in my way too much. I keep pushing myself as much as I can.
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@Roger Bliss you have an interesting history! You are the only person I know who has experience dog mushing! How did you get started doing that?
You seem to have a healthy attitude about what you can and cannot do. Has it taken you a while to get to that point?
I’m hoping for you that riding again will be in your future. I have never driven or ridden a motorcycle but my best friend’s husband took me for a ride on their Harley trike last summer. I was so nervous but my friend insisted I was going to love it…and guess what, I did! It felt so liberating! My friend said it had been a long time since she had seen me smile the way I was when I returned from the ride. So I can understand your desire to get back on the road! Like I said, I wish that for you!
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I got hooked on mushing when I was a little kid in NY state from watching “Sargent Preston of the Yukon” and his dog Yukon King on TV. He drove his dog team around the Yukon fighting crime with King in lead. Got my dog to pull my little red wagon down the driveway. When I moved to AK I got tangled up with some dog mushers who helped me get started.
What I can and can’t do is from trial and error. I have always been like that. I got the “go ahead” today from my cardiologist to exercise.
I am feeling so good I don’t think riding my Harley will be a problem. Actually, I have 3 bikes…..gonna try the smaller ones first and get my”legs” back.
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That’s so cool, @Roger Bliss, that you got the go-to exercise. But now, I know ME will be chasing after your butt. Hehe
But I LOVE your looking forward yo warmer air and riding the Harley. I am so excited to ride with Manny on a ride shortly, too. You’ll be headed back to Alaska soon. BTW we just had another new member join us in Alaska.
Although, I know you hated being admitted to UCSD but so grateful they did and got you back “up and running” again, buddy!
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Now you’re making me miss my Alaska days. I had a good friend who was a musher. He finished third one year in the Iditarod. We both lived on the Kenai Peninsula in our 20s, but I’m in Phoenix now and the last I heard he was somewhere in Texas.
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Finishing 3rd is very good!! I ran it twice in ’86 and ’94. Scratched in McGrath in ’86 and finished 48th in ’94. Didn’t get the red lantern but came close…..only 2 teams finished behind me.😃
We have lived in AK since ’78 and love it. As you probably know…..it’s tough getting used to living in AZ, at least it is for us……we are in Yuma now. We like it for 3 or 4 months, but that’s enough. Driving home after my infusion on the 17th…..can’t wait to get home.
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Oh wow, I didn’t know you were in AZ too. Yes, Phoenix is a far cry from anyplace in Alaska. Maybe someday I’ll get back there.
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@Roger Bliss “Got my dog to pull my little red wagon down the driveway.” OMG that made me smile just picturing it! Just the story leading up to how you got starting in mushing is intriguing. Have you ever thought about writing a book on your experience?
Congratulations on getting permission to exercise! That is awesome! Enjoy this summer riding!
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“Have you ever thought about writing a book on your experience?”
Yeah…..just never got around to it. When I was a tour guide I put together a simple picture book with labels in a 3 ring binder to pass around on the bus. I suppose I could expand on that.
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You want to enjoy the process so I recommend if you aren’t ready, wait until you are. I do hope you will find the right time because I would love to about your experiences and pictures would be a wonderful bonus!
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That’s a great idea, especially if you’re planning to sell your business, @Roger Bliss. As my Dad says, you will then have extra time on your hands and need something to “tinker” with. I bet you could develop some interesting stories, even if it’s a short story or a kid’s picture book.
I love that @Colleen suggested that, and maybe you can get our other comical guy, @Terry, to help you. But I also bet you two can get into double trouble and have fun!
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I see he is in OZ. That’s a long way to go to get in trouble. Usually I don’t need help. I do a pretty good job on my own.😇
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Hehe, @roger, yes, I can only imagine how much trouble you can get into. That’s why you have MaryEllen to keep you on the straight and narrow, or at least try. Yes, @Terry is in OZ, but you both have such a story telling but comical side.
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This is one of the hardest things about PH, I think. You lose your identity. You sort of lose it anyway as you get older, but PH takes it fast. I was never super athletic (to be honest, usually picked near last in PE), but as an adult I got into hiking and biking and cross-country skiing and thought of myself as a healthy, fit, outdoorsy person. I was so embarrassed and sad the year I was diagnosed when I had to ask some other moms to take my kid on a very easy hike because I couldn’t do it. The hardest thing was that exercise had always helped with my depression. Now I have to tank up with oxygen to go for a walk. But to your point about what that previous identity has given me. I have a deep understanding of how important exercise is to my well-being, so for the last 4 years I have pushed myself to keep moving however slowly. It’s hard. I’ve tried 3 gyms and still feel self-conscious with the oxygen. Now I’m in a Silver Sneakers group (though I’m not technically old enough) and I’m enjoying “dancing to the oldies” as often as I can push myself to go there. I put my oxygen tank on the chair or the floor and work around it. I also still walk and sometimes take short hikes, but I’m doing less of that because carrying the oxygen backpack has started hurting my back.
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You can do only as much as your body will let you. Don’t beat yourself up over things you can’t control. I can see where being in a gym is tough on you. Your hanging around people who are in shape like you used to be. That can be depressing.
Try doing some volunteer work with handicapped people or maybe join them in a sport. I used to do that back when I had my dog sledding business in the mid 80’s before I had PH. I used to get a bunch of volunteer mushers to donate their time for a 3 day trip. Those handicapped people were having so much fun we couldn’t believe it. It made all us healthy people think twice how blessed we are after seeing how happy they were. Our problems suddenly seemed pretty small compared to theirs. When I am having a bad day I think back on those trips and it still cheers me up.
Check the link out the link. Maybe you can find something similar in your area???
https://www.challengealaska.org/home
challengealaska.org
Challenge Alaska Improves the lives of people with disabilities through adaptive sports and therapeutic recreation.
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Hi, @Roger Bliss , thanks for sharing such an incredible organization in Alaska. You’re right, most areas
have some orgaozations that many can volunteer to help the elderly or disabled. I think of Meals on Wheels. However, here in San Diego, there are several choices; one I found is The Arc of San Diego. Here’s their link below.
But I want to tell you how kind your words to @Cathy Brown are. We often are our worst critics, so thanks for sharing that reminder not to beat ourselves up when we are already giving it our all, and then some, most days.💜
arc-sd.com
The Arc of San Diego is one of the largest, most comprehensive service providers for people with intellectual and developmental disabilities in San Diego County.
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Hi, @Cathy Brown. Your post saddens me, yet I can relate to you on some level. It’s not wrong that we lose our identity; as I would like to say, we must reorganize and rediscover it. But again, as you mentioned, this happens, too, with age.
Carrying the oxygen to the gym, I, too, have felt self-conscious, especially when everyone stares at me. I can sense it no matter how hard I try to focus on my exercise. I’ve been trying to do more at home. So, congrats on sweatin’ to the oldies.
The backpack bumps into my back at times when I ride my E-bike. It is not light, so I get it. I would toss mine on the floor next to the machine I was using, etc. I wonder if some extra padding would help some.
This would make for an interesting discussion for a column. Would you be interested in me interviewing you about this struggle? It can be via email or whatever is easier for you. If so, send me an email at [email protected].
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I used to be phrendly and devoted professional who had pride and happiness on helping others, making a difference in their simplicity of difficult situations . Now I am a person who lives an unselfishly kneeling. I used to carried the world over my shoulders now my shoulders are weak and fatigue from panhandling for love. Loneliness is painful, good thing I was not part of the eclipse pathway. Everything is a challenge. But there is bright side, a mama duck just got 12 newborns ducklings. Nature is beautiful, what a beautiful gift ❤️.keep practicing gratitude, kindness is the best medicine.
Smile, make great memories 🌹🌹🌹
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Hi @Hilda, you know what? All those you carried on your shoulders before—it’s time they helped carry you. Unfortunately, as givers like me, we are often the least likely to ask for help. I am working hard at this, but it’s still not easy after 19 years of PH.
Please know you are never alone. We are here, so come in anytime, my PHriend. 💜
Aww, I bet those baby ducklings are too cute. Nature is beautiful and helps me reset my mind. Do you find that helps you, too? I will sit outside later as I write a column, read, and enjoy this beautiful sunny day. 🌻
Yes, ma’am, gratitude, kindness, and smiling help, too.
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Interesting question ,hang on I’ll have look at the question again. …. Hmm truthfully I was a workaholic who lived life to the max where sport be it golf , ocean racing , trap shooting etc. become an obsession at the expense of everything else. Winning ,or trying to ,was everything. I lived a ‘boys own’ life from above to catching wild buffalo ,rounding up brumbies , working in the outback ect.ect. The limitations bought upon by PAH has given me cause to slow down ( surprise surprise) and reflect on what I missed out on . So in one respect having PAH has made me slow down and smell the flowers.
Hell I love being alive.
I’ve gotta say a bloke who rides a Harley in Alaska does not need any help from a degenerate like me. My last bike was an old Ducati race bike when the riding position was crouching not like the sit up and beg on a Harley .Anyway one time I did a 300 mile ride in freezing wet weather . Honestly even the penguins in the Antarctica would have been in their burrows. Anyway toward the end of the trip I pulled into a petrol ( gas) station for fuel and before I stopped realised I could not feel my legs or lift my arms ( frozen) so I idled past the pumps rode up to the side of the building and leant myself and bike against the wall . It took a few minutes to thaw. It’s your fault I lose track of the question. Ha
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G’day mate, @Terry. I can certainly see you as a workaholic. But you bring up an important fact that most of us would agree with: “PH has made you slow down.”
Yes, I can echo this thought, maybe 80% of the time. I, too, was a workaholic. Although my therapist recently said I am still so busy with work and advocacy projects, it never dawned on me how all of the little tasks add up. 🙈
Aww, my hubby has had several bikes. He’s had a Ducati and now has a Harley. Yes, those sports bikes are not so comfy. I’ve been on the back of a few. The Harley now feels like a recliner. Maybe it’s because I’m getting older, and my body is already hurting, so not crouching on the bike is a positive for me.
Geez, Mate, you never fail to share a good story to laugh with us. You just needed a good thaw, hehe.
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“Who was I before PAH” The person inside me has not changed. The physical part has … I was always very athletic. I loved sailing, downhill and cross country skiing, hiking up mountain passes, biking riding, etc. I am not able to do the physical stuff anymore and I do miss that, but not able to do those things has not changed who I am. It is frustrating at times when together with friends who are going on a hike … As Cathy said this also changes with age. Since I am about to turn 80 and if I did not have PH, I probably would not be as able as before.
Another physical change has been my appearance – because my PAH was caused by Scleroderma my face has red broken blood vessels all over, my lips have gotten thinner and my hands the skin is very tight and stiff. Before PH I had modeled – it was not my career for I had been Yacht Broker then a Career Management Consultant and volunteered with kids and adults in crisis.
I am a strong believer in what we have been, what we have been through in our lives have made us who we are today – all of it has made us stronger. ❤️
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Wow @Carol Volckmann I just learned many things about you I didn’t know. You have lived an impressive life and of course it’s all a part of who you are today! I bet you have some amazing memories and I hope they still fill your heart with joy!
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Hi there sweet PHriend, @Carol Volckmann . I knew many of those things about you but also learned a few new facts. You are such an interesting lady. When will you turn 80?
It doesn’t surprise me that PH hasn’t changed you inside. I get where you say that. However, IO
the changes in my body. I’ve found that it has changed me and made me more resilient and vulnerable, I would say. Yes, and we are all stronger because of the difficulties of managing PH and other coexisting conditions. 💪
Also, although I don’t have scleroderma when I look in the mirror, my outside appearance has changed in many ways. My face is thinner and pale, and I sometimes ask who is that in the mirror. But as you and Cathy both mention, age also causes some of these changes. (Wrinkles? )
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I was a very outgoing person that traveled daily and weekly. Always in a new and different place, meeting new people. I was constantly working on new telecommunication installations, deploying solutions to some of the fortune 500 companies, rollouts of “contact centers, worldwide to support 200 to 1000 agents. Developed training classes, targeting customer requirements. Worked on Internet and voice switching networks. Hustled to reach my personal financial goals. Now all I have is constant health challenges, it is easier to tell you what I don’t have. I am frequently rejected from organ transplant programs , because of my age, health and race I feel that at 73, I have a lot to contribute to society, thou most feel, that this is wasting a good organ on someone so close to death . I try hard to remain positive, but this routine is taking a toll on me physically and mentally. I have been itching all over for 7 weeks with frequent whelps and rashes, no it is not an severely elevated phosphorus level I take 12-15 binders per day. I finally got my insurance carrier to submit me to Emory Transplant Center, and today, I received a call from Piedmont (whereas, I had been turned down for being over70 and having had open heart surgery [chest never been cracked], had to remind them that I had already been rejected . That sent me into a spiral of anger, that someone had not done their job and my paperwork sent to the wrong place. Thanks again for allowing me to vent.
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jimi-mcintosh reading your post my heart goes out to you. I am in awe of you – going through all your health issues and being rejected for a transplant, you still stay as strong as you can to be positive. Knowing you still have much to give this world- you are doing just that. Teaching others to have hope, to be positive and also vulnerable and to share your anger, frustration to the let others know it is okay to vent! Yes, you still have so much more to give! Thank you jimi.Sending warm hugs, prayers and love ❤️,
Carol
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