In What Profession Did You Work Before PH?

[mary-winn]

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.

[Colleen]

@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.

[sally-hoffman]

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.

[sandra-guajardo]

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.

[gayle-ward]

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.

[barbara-thompson]

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.

[Colleen]

@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!

[annefox]

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.

[Colleen]

@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.

[Colleen]

@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?

[Colleen]

@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.

[Colleen]

@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.

[annefox]

Colleen,

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

[sally-hoffman]

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.

[Colleen]

@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.

[jen-cueva]

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.

[jen-cueva]

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.

[jen-cueva]

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.

[jen-cueva]

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.

[jen-cueva]

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.

[jen-cueva]

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.

[gayle-ward]

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

[karen-van-schaick]

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

[mary-winn]

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.

[Colleen]

@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?

[jen-cueva]

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.

[jen-cueva]

@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?

[jen-cueva]

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.