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    • #27821
      Jen Cueva
      Moderator

      Because October is Disability Employment Awareness Month, I wanted to ask this question. Many of us with PH is no longer to work. Some of us work some but in different professions. This includes caregivers, too.

      I worked in nursing before PH. Since 2005, I was not working until last year when I started writing my column for PH news. I am grateful because this allows me to help others in the PH community.

      What profession did you work in before PH? Were you able to continue that profession, or did you change professions? Do you work part-time versus full time? Let’s talk about this.

    • #27824
      Mary Winn
      Participant

      I was blessed to work in a profession I absolutely loved as a dental hygienist. I was first diagnosed in October 2001 and had to leave in May 2002 with a medical disability. By the end of 1999, I was no longer working in a dental office. I started with a B.S. in Dental Hygiene and then earned a MPH in Public Health. I worked in a very responsible position with the County’s Public Health Department when PAH hit me like a wrecking ball. It broke my heart at the time but I was so ill I wasn’t in any shape to continue.

      • #27834
        Colleen Steele
        Keymaster

        @marywinn PH really does have a way of crashing into life like a wrecking ball. It’s sounds like you really enjoyed both jobs and I am so sorry that you had to choose between them and your health. I hope it didn’t ruin the pride you should take in the work you use to do. Your work in the Public Health Department, as you mentioned, was important but just remember, nothing is as important as taking care of your health. That too comes with a lot of responsibility and I’m sure you are doing at good job at that too.

    • #27825
      Sally Hoffman
      Participant

      I was a Rehabilitation Counselor. I began as a Vocational Evaluator at a Sheltered Workshop for Developmentally Disabled adults. After a couple of years I moved into a counseling postion at the same workshop in NY

      My second job in Rehab was as the Director of a Psychiatric Day Treatment Program for Developmentally Disabled and Mentally Ill geriatric patients in NY

      My third and last job as a Rehabilitation Counselor was in Maine, where I had a private practice working with Injured Workers.

      After I retired from counseling, I became an antiques dealer for 25 years. I look back now and realize the heavy lifting and long hours at shows became too much for me, was probably the beginning of PAH.

    • #27826
      Sandra Guajardo
      Participant

      Since before I was diagnosed in May 2017 I’ve been working at a university as a Financial Analyst, a lot of number crunching which I actually enjoy. I’ve been fortunate to be able to continue working in the same job full time. When I was first diagnosed I had to out for 2 months and on another occasion had to be out 4 weeks. My supervisors and upper management are aware of my health issues and have been very supportive. Since COVID I’ve been able to work from home and that helps reduce being exhausted. It saves me time in the morning not having to get dressed and just to be able to walk over to the dining table to start working.

    • #27828
      Gayle Ward
      Participant

      I was lucky to have a job I loved. I worked as a Registered Nurse for 45 years in acute care. My job was always interesting with the opportunity to continue to learn new things and be able to make a difference . It’s hard work but very rewarding. If my health was better I would still be working.

    • #27830
      Barbara Thompson
      Participant

      Chuck & I owned our own business; Classics Via Barbara. We did weddings. I loved working with Chuck everyday & with the brides. We did it all; cakes, catering, dj, clergy, photography, video, flowers, consulting/directing the weddings & receptions, accessories & even had the the hall. We were bringing in wedding dresses, too. In fact, the last thing I remember prior to diagnosis was getting a bride down the aisle in April of 2000 then nothing much else until 12/12/2002.I was so angry at God for taking my “girls” away from me in one of the most important days of their life. I think my lot in life since the PAH diagnosis is raising awareness of this devastating disease. Instead of The Weddin’ Lady, I’m now The Zebra Lady.

      • #27842
        Colleen Steele
        Keymaster

        @barbarainmemphis I can just imagine the beautiful memories you made for those brides. What a great job! One that required excellent organizational skills and a very extroverted personality. My impression is that you are the full package because you shine as the Zebra Lady too! I love that title!

    • #27833
      anne
      Participant

      I started out as a 10th grade guidance counselor for 2 years in Florida for 2 years. I moved to California and became head of educational therapy at the VA in Palo Alto. Then got married and moved up to San Jose and was a Vocational Rehabilitation/Habilitation counselor for all types of people with new types of disabilities. Like people leaving state hospitals with low IQs and having to find places to live and places to do things in the day time. I worked with young head injured when they were all winding up in nursing homes — terrible– able to set up 2 houses next to our hospital for OT/PT nursing staff could help them get ready to servive in the outside world. Then moved over to work with quads and high level paras. Moved again to Virginia and wrote IEPs for military kids leaving the DC area and all the military kids moving into the DC. Stayed home for years and years until my baby graduated from high school. First I taught biology to Special needs students and then off to become a “go to work teacher” for higher functioning special ed kids. After 6 years, I became all squished up and quit. Became disabled myself and went on SSDI for about 15 years. Now, I’m an old, old 74 falling apart woman.who cant breath well.

      • #27844
        Colleen Steele
        Keymaster

        @annefox you have led a beautiful life helping others. I was so touched reading about your work experience. I’m sure you miss the work but I hope the memory of the difference you made in the lives of others brings you joy. I hope that you are now receiving the same care and kindness you always provided to others.

    • #27837
      Colleen Steele
      Keymaster

      @mainegal it must feel good knowing how many people you helped throughout your career. I hope that you now receive the same support that you once provided others.

      My parents were always into antiques but more as a hobby. I remember tagging along with them as a child while they perused antique stores. They reserved a few rooms in our house for their special finds. A close friend of my dad’s did antique auctions for many years. He recently told my dad that the business is fading out because the younger generations don’t have as much of an interest in antiques. That is sad if true. Has that been your experience?

    • #27838
      Colleen Steele
      Keymaster

      @sandra-guajardoutrgv-edu to have a brain like yours! I was an English major for a reason. I have never been good with numbers.

      I think the one good thing that has come out this epidemic is that people are more aware of the possibilities of working from home. Until now many felt pressured to work even when they were sick. When and if things return to normal maybe employers will pressure less and allow people to work from home when they need to.

      I’m so glad you work with supportive people. That really does make a difference.

    • #27840
      Colleen Steele
      Keymaster

      @gward nurses hold a very special place in my heart. The care they have provided my son over the years has made such a huge difference in not just his physical well being, but emotional as well. Thank for the years over service you provided. I’m willing to be that their are patients who still remember you.

    • #27846
      anne
      Participant

      Colleen,

      What wonderful statements you have made to me and the others. Thank you, Anne

    • #27847
      Sally Hoffman
      Participant

      Colleen, Your father’s friend is right. The antique trade has definitely fallen off. The younger people are more interested in decretive arts, if anything.

      I have been very fortunate in my illness. I have wonderful support from everyone around me. I never thought of it as payback. If anything I probably became a Rehabilitation Counselor because I always had good support and care for any medical events. Plus my mother was a wonderful role model. She was ill with a disease where people lived for 2 – 3 years. She was one of the first chemo therapy patients and allowed many experimental drugs. She lived for 22 years. She always had a wonderful attitude, never said poor me. She taught me to make the most of every day.

      Hope you are doing well with your makeover! You surely will not have a hard time. You radiate sunshine.

      • #27880
        Colleen Steele
        Keymaster

        @mainegal I bet your mother never realized just how much her positivity would influence you in the future. Having that memory of her must make you feel like she is supporting and giving you strength to this day.

    • #27860
      Jen Cueva
      Moderator

      Oh no, @marywinn, I can relate to the heartache you felt when you could no longer work. Working in hospice care, I was devastated when I had to stop in 2005. I certainly understand how you relate PH to a wrecking ball. It certainly can wreak havoc on our lives and our bodies.

      Have you started to feel at peace at all since this was in 2002? Mine was 3 years later, and I am grateful to offer some hope to others in other ways. I am certain that you do the same.

    • #27861
      Jen Cueva
      Moderator

      Hi @mainegal, It sounds like you were such great support for so many for years before PH. Then the antiques, that must have been fun but like you mention, a ton of work. I hope you can now rest and have some support around you that you once offered to many.

      I love the comment about your mother being such a strong role model. It sounds like you are following in her footsteps. I am certain that she would be so very proud of the strong woman that you are. Thanks for sharing. I am so happy that I asked this because I was unsure of who would respond. By sharing some of our before PH lives, it helps to understand and learn from each other.

    • #27862
      Jen Cueva
      Moderator

      Hi @sandra-guajardoutrgv-edu, I am so happy to hear that your job can be done at home during this time. I know that working for someone aware and supportive of your health is a huge plus. I hope that you will continue to work as long as you wish. Thanks for sharing.

    • #27863
      Jen Cueva
      Moderator

      Wow, @annefox, you have helped others your entire life! That is such an amazing gift. I am certain that so many were positively impacted because of you and your help. I can bet that you miss doing so much to help others. But at this time, I am hopeful that others will offer you such kind support as you need it.

      I think you mentioned a close friend that comes to help you out at times. I am grateful to know that you have some help. Thanks for sharing. I am touched by reading yours and everyone’s stories.

    • #27864
      Jen Cueva
      Moderator

      Hi @gward, I knew that you were in nursing, but 45 years, wow! That is impressive. I am grateful that you could do such rewarding work. I know from experience that while reading, it is tough some days. As a patient, I am grateful to have good nurses who enjoy their job. You can certainly see a difference, and they help in so many ways.

      Thanks for sharing a bit more of your story. I hope that you find mostly good nurses when you need them. I have always heard that nurses make the worst patients; what do you think? I tend not to want to bug my nurses when I am in the hospital, LOL.

    • #27865
      Jen Cueva
      Moderator

      Hi @barbarainmemphis, for some reason, I recall some of your stories. I am guessing I have read it since 2005 somewhere. Were you and Chuck in Memphis during this time before PH life, too? I love you as the Zebra lady, but I know you must miss that wedding business. I did not recall that y’all did the whole “shebang,” including cakes, etc. Geez, did y’all have a large staff? It sounds like a ton of fun but also entails a ton of work. I know only from recently seeing all of this when my daughter got married.

    • #27872
      Gayle Ward
      Participant

      Jen, I have to say it’s true. Nurses are the worst patients and I am no exception.

    • #27874
      Karen van Schaick
      Participant

      I started to work in 1984 in the food service, did many different jobs dealing with food. I was a deli manager from 1984 to 2003. worked as a daycare cook from 2005-2011, the a chef and server at a rehap hostpital from 2012-2019. the as a chef at a senior assisted living fom july 2019-august 2019. then i went out with medical disability due my many health issues. In 2003 cirrhosis of the liver then in 2007 with having Pulmonary Hypertension and autoimmune disease which means i have no immune system. My doctors were quite amazed that i work in my field for 35 years. with this covid-19 I have been really lucky, since i only go out to our grocery shopping about every 2 weeks. My husband picks up my medicine from the grocery store he works at. I miss working and miss my friends i made at the rehap hospital.
      eveyone have a great day. karen van schaick from waukesha wisconsin

    • #27875
      Mary Winn
      Participant

      For Jen: Yes, I have found peace as I have done well for most of the 19 years since diagnosis and once the meds started helping me. Unfortunately, I also have MCTD and the autoimmune issues, especially scleroderma, have become more complicated the longer I live. Was diagnosed at age 50 so I’m 69 now. The brightest lights in my life now are my grandchildren (almost 2, 4 and 6) and I absolutely adore them. I am determined to be around as long as I can to be a part of their lives even though we see each other through FaceTime only. My hobbies help me feel productive each day and daily exercise is helping me feel productive each day. I can hardly wait until a dependable vaccine arrives and I can then be liberated from my home and spend time with my grand babes face-to-face.

    • #27881
      Colleen Steele
      Keymaster

      @karen-van-schaick my in-laws live in WI. My sister-in-law cooked for a school cafeteria for years but I think she told my husband she cooks for a nursing home now. She said they have to eat so she continued going into work since the Covid outbreak. I know she takes great pride in the work that she does and I’m sure you did to. I bet your co-workers/friends miss you too!

      Are you able to do much cooking at home? What are your favorite dishes to prepare?

    • #27884
      Jen Cueva
      Moderator

      Oh @gward, thanks for bursting my bubble, hehe. I have always heard that. For me, that depends on the day. But some of my nurses and my medical team like that I was a nurse; others do not. Do you also find that to be true? When I go to the hospital, I do not tell them. Mostly after some nurses did not care for my suggestions about drawing my blood without poking me 5-10 times, LOL.

    • #27885
      Jen Cueva
      Moderator

      @karen-van-schaick, I love that you shared your work in the food industry. I love food and enjoy cooking when I feel good. When you mentioned that you were a chef at an assisted living facility, it reminded me of my work. I worked in nursing and my early years before hospice, one of my jobs was the nurse manager at a very nice assisted living facility. We had this chef there that was amazing. He not only spoiled the residents, but he also spoiled my care team and me too.

      I remember because I have never been a big breakfast fan, he made me breakfast. I had to be there at 5 AM, so he knew that I should not wait until 10 -12 to eat. He would ask what I liked at first. He just started making my personal requests and having it ready just as I was done with my first rounds. By reading your story, this reminded me, and I am all smiles and probably now hungry since I have only been sipping my hot tea so far this morning-hehe.

      I am certain that you also spoiled all there, too. It is tough when we stop working because so many of our colleagues become close friends. What do you enjoy cooking at home? Do you have a large family?

    • #27886
      Jen Cueva
      Moderator

      Hi @marywinn, I love that you shared about your little grandchildren. I can only imagine how difficult that is to only to see them through FaceTime. But, I am sure that technology like FaceTime and things have made a huge difference in our lives during this pandemic. They sound adorable, and I am sure that they love you as much, if not more. Our grandparents are always such important relationships, aren’t they? Do they live nearby?

      I hope and pray that things improve soon to visit them and enjoy the hugs and kisses you deserve. In the meantime, it sounds like you are doing what you can and making the best of this challenging situation. Kudos to you for focusing on what you can do each day.

    • #27913
      Bruce McDougald
      Participant

      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.

    • #27925
      Jen Cueva
      Moderator

      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.

      • #27982
        Bruce McDougald
        Participant

        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.

    • #27940
      Barbara Thompson
      Participant

      @colleensteele, it was an amazing occupation and wonderful to work with family as well as our employees who also became lifelong friends.

    • #27943
      Barbara Thompson
      Participant

      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.

    • #27944
      Barbara Thompson
      Participant

      @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.

    • #27945
      Colleen Steele
      Keymaster

      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?

      • #27983
        Bruce McDougald
        Participant

        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.

    • #27946
      Colleen Steele
      Keymaster

      @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.

    • #27957
      Jen Cueva
      Moderator

      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.

      • This reply was modified 1 month, 1 week ago by Jen Cueva.
    • #27963
      Barbara Thompson
      Participant

      @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

      https://www.youtube.com/watch?v=Fj3GhQaJX3I

    • #27967
      Jen Cueva
      Moderator

      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?

    • #27973
      Donna Lambro
      Participant

      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.

    • #27976
      Barbara Thompson
      Participant

      Here’s a link to the 2018 Show https://www.youtube.com/watch?v=uPy9l9DZ5eo
      My PH doctor, Joy Burbeck, was our guest.

    • #27978
      Barbara Thompson
      Participant

      I forgot to put @jenc so you’d see the 2018 link: https://www.youtube.com/watch?v=uPy9l9DZ5eo

    • #27980
      Barbara Thompson
      Participant

      @jenc, of course, you are welcome to share anything I’ve done or do.

    • #27986
      Colleen Steele
      Keymaster

      @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.

    • #27988
      Jen Cueva
      Moderator

      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?

    • #27989
      Jen Cueva
      Moderator

      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?

    • #28000
      Charlene Nelson
      Participant

      I was a Respiratory Therapist. I sure never expected to be the patient!

    • #28008
      Colleen Steele
      Keymaster

      @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.

    • #28028
      Jen Cueva
      Moderator

      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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