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In What Profession Did You Work Before PH?
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For 34 years I worked in the Human Resources department of the Office of the Mayor for the City of New York. I started as an entry level analyst, worked my way up to Deputy HR Director then became the Director for the last 26 years of my career. I most likely had PAH for years before my actual diagnosis in November of 2017. But my energy level had been in noticeable decline for several years. It became so bad that I was absolutely could not keep up with the demands of my position. I decided to take early retirement with a reduced pension in October of 2016, but was able to qualify for social security disability, which helps me out financially.
With treatment (I’m on Adempas, Opsumit and Uptravi) I feel so much better. But not well enough to ever work again, not even part time. Hopefully, I’ll be able to start volunteer work part time after the pandemic.
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Hi @brucemcdougald, thanks for sharing your work in HR. I can only imagine how many long hours you worked for the city of NY. Are you still in the NY area?
It sounds like with your reduced pension and SSD, that does help, which is such a positive. It sounds like 26 years of hard work. You probably worked more than many others.
It sounds like your PH meds are helping you feel some better. You mention volunteering. What type of volunteer work would you like to do? I hope that this happens soon, and you can share it with us when it does. Stay safe.
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To Jen,
Thank you for your response, much appreciated. I have a good friend (also former work colleague) who is on the Board of The Generations Project. TGP cultivates intergenerational community communication and preserves LGBTQ+ history through oral story sharing. They produce and film live storytelling events and facilitate programs to foster connection and empathy across all ages, classes, and sexual and gender identities.
Since this issue is close to my heart I want to continue making donations to their cause and when it is safe to do so I hope to volunteer with their public events and fundraising.
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@colleensteele, it was an amazing occupation and wonderful to work with family as well as our employees who also became lifelong friends.
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Yes, @jenc, we were in Memphis. We employed up to 27 employees depending on how large and how many weddings and receptions we had to make happen. Congratulations on your daughter’s nuptials.
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@annefox the girls I was speaking of were my girls, the brides in our wedding business.
Why the Zebra = When physicians first learn how to reach a diagnosis, they are taught, “When you hear hoof beats, think horses, not zebras”. Through this example, instructors encourage their medical students to think first of the more common and therefore more likely diagnosis. We are medical zebras because Pulmonary Hypertension is not the first diagnosis doctors think of.
The Pulmonary Hypertension Association launched a campaign in 2012, (I think), using the zebra as a mascot of sorts to raise awareness & I jumped onto that train wholeheartedly & have even become known at The Zebra Lady as I wear something with a zebra print EVERYDAY of the year. I’ve developed several graphics that include my zebra named PHyllis &/or zebra print. With the assistance from PHA, I had a card made that I give out on a daily basis that explains the zebra analogy on one side & briefly describes what Pulmonary Hypertension is on the other.
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Wow @brucemcdougald what was it like working for the NY mayor’s office? That is impressive and I bet it was very demanding. I can understand how difficult it must have been for you when your PH symptoms kept increasing. What type of volunteer work are you looking to participate in after the pandemic?
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To Colleen,
You asked what type of volunteer work I hope to do after the pandemic. As Jen asked the same question I hope you don’t mind that I copied my response to Jen in this response to you.I have a good friend (also former work colleague) who is on the Board of The Generations Project. TGP cultivates intergenerational community communication and preserves LGBTQ+ history through oral story sharing. They produce and film live storytelling events and facilitate programs to foster connection and empathy across all ages, classes, and sexual and gender identities.
Since this issue is close to my heart I want to continue making donations to their cause and when it is safe to do so I hope to volunteer with their public events and fundraising.
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@barbarainmemphis thank you for explaining how zebra stripes is often used as a symbol for PH. Especially our recently diagnosed members might not be aware of that yet. You do such a great job of spreading awareness. So glad you joined our forums.
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Thanks, @barbarainmemphis,
Yes, planning a wedding is so much fun but a ton of work. I can see how you would enjoy doing this. Making “your girls” days special by bonding with them, I am sure it was the best.Wow, I did not realize that you had such a large staff. Thank God. I am certain that you do miss this.
But, you are doing so much with PH and PHA and have through the years. I do remember PHyllis and also the zebra items. I bet I have a few from back then. Thanks for all that you do for us in the PH community.
I recall one year you were on local news. When was that? It may have been several times, but one stood out in my memories. I hope that you stay busy but also take much needed time for your self-care.
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@jenc, yes we’ve done several Loretta McNary shows in the past but won’t be able to tape one this year. Here’s the one from 2018: https://www.youtube.com/watch?v=Fj3GhQaJX3I
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Thanks for sharing that @barbarainmemphis, I do remember that! Thank you for all that you have done and continue to do to raise awareness. I have contacted the state of Texas and 3 cities, each one that I lived in at that time, and we received proclamations. This is so important. Do you mind if I share this in the advocacy awareness sub-forum?
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I was never able to work full-time. I’ve had PAH my whole life, it came along with my unrepaired heart defects. I never went to college. But I did work 28 years as a supervisor in fabric stores. It was hard sometimes carrying heavy bolts of fabric and upholstery. But I loved to sew. After all the stores in my area closed, I became a receptionist in beauty shops. I loved it. I made the same money but I could sit more and relax. I also got my hair cut and colored for free. I don’t sew much since I had cataract surgery. But I can’t get rid of my sewing room. I don’t do much now, I’m quite a couch potato. I retired at 55. I am now 58.
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Here’s a link to the 2018 Show https://www.youtube.com/watch?v=uPy9l9DZ5eo
My PH doctor, Joy Burbeck, was our guest. -
I forgot to put @jenc so you’d see the 2018 link: https://www.youtube.com/watch?v=uPy9l9DZ5eo
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@jenc, of course, you are welcome to share anything I’ve done or do.
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@brucemcdougald copying and pasting is fine but you can also tag as many people as you want in one post.
I hope 2021 is a healthier year (Covid Free) so you can start participating in this wonderful volunteer work. Thank you for telling us about it. I could feel in your words the passion you have for it and desire to help others.
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Wow, @brucemcdougald, I am grateful that you shared your passion with us. I am hoping that soon, you can start this volunteer work. I cannot wait to hear more about this when you get started. This is quite an interesting passion, and your heart shines through the text.
Thanks for sharing, are there things you can do during COVID with this, or has this been on hold?
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Thanks, @barbarainmemphis. I will share it there now. Great share with PH awareness month next month. Are you doing anything this year, or have things all been put on hold along with the TV show?
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I was a Respiratory Therapist. I sure never expected to be the patient!
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@crteson I bet that was quite a shock as an experienced therapist to be diagnosed with PH. Did you recognize the symptoms and predict that is what you had before seeing a doctor?
This would make a good topic for “30 Days of PH”. I still have spots to fill. Would you be interested in writing a 300-400 word essay about being a raspatory therapist diagnosed with PH? If so, private message me your email address and I will send you more information.
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Hi @crteson, that must be an interesting twist. I worked in nursing before I was diagnosed in 2005.
I agree with Colleen. This would make an excellent topic for 30 Days of PH. I would love to hear more about this transition.
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