Like Oil and Water - Work and PH

By Kiara Tatum

The academic school year has finally ended at the college, and my return to work after seven years has a summer break.  It felt great to be working, using my master’s degree in social work, teaching diverse students, having discussions on contemporary social problems, and actually getting paid to work.  I didn't know if I could actually do this, but I wanted to try it—failure or success didn't matter.  I didn't let my fears, anxiety, or self-doubt stop me from pursing this new journey in my life.  

Working and having PH can be a difficult especially if you don’t have an idea as how to start, what job you can physically and mentally do, or support on the job.   For those of you thinking about returning to work and those of you who are working, I have a few helpful tips to share with you that I learned from my own experience.

1. Know your rights as a disabled employee.  All employers have policies, and knowing what those rights are helps get through times when you do have to miss work because of your illness.  After my hospitalization at the being of the spring semester, I learned that I had the right to cancel classes, and it was based on how many classes and hours of each class that determined how many classes an adjunct instructor could cancel before it impacted your contract with the college for the semester.  And even before my return to work, I met with a disability advocate that helped me to understand my Social Security Disability Insurance when I start work.  I found that to be most beneficial to me because I didn't want to lose my Medicare insurance because I wanted to try work again.  Disability Law Handbook 2013
2. Don’t do it alone.  Each state has an organization to assist those with disabilities to return to work or assist with maintaining employment.  Find out what your organization is and go to them for help.  They have services from job readiness workshops to job coaches.  I met with an advocate to help me navigate the different systems that were involved if I decided to return to work.  I met with her almost a year before I actually decided to look for employment.  There are people who know these policies and advocate on the behalf of the disabled.  There is so much I have to do to maintain my Medicare medical insurance as well as my Social Security Disability Insurance, but I didn't lose those necessary benefits despite going back to work.  I even received information on transportation options for work since I don’t have a car and can’t rely on my family to chauffeur me to and from work. Social Security Administration and Work Site
3. Don’t hide your illness.  The whole company or in my case school doesn't have to know, but at least your direct supervisor and a close colleague or two should know that you are diagnosed with PH.  This will help you when you have an emergency at work, have to take a sick/personal day, or need support on the job.  I always feared that I wouldn't be able to find employment because of my oxygen tank travelling with me.  But I felt very comfortable interviewing for the job, and I obtained the job based on my knowledge, skills, and experience.  I couldn't hide my illness, but I didn't feel the need to hide it.  Slowly I shared my illness with a few colleagues once I felt comfortable, and some colleagues were curious and did ask.  I shared the PH diagnosis with my students on day one. I wanted them to be comfortable in the class and not staring at me during a lesson.  It especially helps when I’m having a not so good day or have to cancel or miss class.  
4. Give yourself a break.  Whether it’s a summer break, a week’s vacation, or a personal day, take that time.  I may not have a full-time job, but teaching is full-time work.  I have to create class lessons with attention grabbing activities, create and grade assignments, exams, and projects and be supportive to the students.  It’s a lot of work, so the summer break will be a great way to rejuvenate myself and spend leisure time with my family and friends.  You need to have “you time” every once in a while.  
5. Do it your way.  Sometimes how others do the job may not be the way that you can do the job, so do what works best for you.  Because I have a chance to be creative when teaching, I don’t lecture the entire time.  I have break-out sessions for students to participate in small group discussions.  This allows me a chance to breathe and relax if I need it.  Also a chance to blow my nose and drink some water—I use oxygen supplement, so my nasal passages aren't the best and I’m always dry and thirsty.  Sometimes employers are able to assist you with the right equipment needed for you to do your job efficiently for you.  Just ask your supervisor, which is also a reason you don’t want to hide your PH diagnosis.  This gives you opportunity to be creative and persevere despite having PH.  
6. BYOL – Bring Your Own Lunch.  I did notice that I was retaining fluid more during my work days because I was eating at the college rather than preparing food at home.  I tended to eat more unhealthy foods such as bacon, egg, and cheese breakfast sandwich and for lunch turkey sandwich with mayo, lettuce and tomato and a side bag of chips.  To a healthy person this would be okay, but for someone on a low sodium diet bacon, cheese, and turkey cold cuts are on the list of foods not to eat.  So by preparing healthier meals at home and bringing them with me, I was able to control my fluid retention easier.  It’s not fun working and being short of breath and lightheaded because you’re eating the wrong foods.  
   
7. Prepare ahead of time.  With PH, you can wake up have a bad PH day.  So by preparing the night before or preparing Plan B and even Plan C or D; you can still work despite not feeling so good.  Lay out your clothes out the night before, utilize a planner for your schedule for the day in advance, and give yourself at least two hours in the morning before you have to leave for work.  You would have plenty of time to shower and dress for work, to eat a healthy breakfast, to prepare a healthy lunch and a couple of healthy snacks, and to relax and not rush in the morning before having to leave for work.  I like to watch the news in the morning before I leave for work, so I leave myself about three hours before work.  And when I get to the college I have an additional two hours to review my lesson plan and make copies.  If I’m having a not so good PH day, I can change my teaching style for the day.  I may have more break-out sessions as opposed to me lecturing for class.  I can also incorporate an activity to go along with the lesson, so I have a lot less work to do.  I also may sit rather than stand during lecture if I'm not feeling so well.  But I allow myself to have options.  Maybe at your job, you can do a day of paperwork from home or something less strenuous on the job that wouldn't require you to lose a day of work if you’re having a bad PH day.  
8. Don’t be so hard on yourself.  I know sometimes you want to push through and be like every employee or even go beyond what’s expected of every employee, but your body won’t always allow you to do it.  And that’s okay.  I know that if I can’t come to the school because I’m in the hospital, there’s nothing I can do.  I also know that it’s okay that I can’t come to the school on a different day from what’s scheduled with the bus company, but I won’t let it keep me from supporting my students any way I can.  If I can’t grade an assignment because I needed to take care of me; then I have to just do that.  I think this was the hardest lesson for me to learn through my work experience, but I’m always ready to relearn this lesson as new challenges comes my way, and I have to let go of my issues because it is my issue.  Everyone else was okay with me having to say no, but I just wasn't okay.  I have students who said I was an inspiration to them; I had students that wanted to know what other classes I would be teaching, so they could register for those classes.  I even had students tell me that I was their favorite teacher this semester.  So sometimes by being different, being more creative, and being honest have a way of benefiting others just not yourself.  

This academic year has been exhausting and stressful but fantastic and exciting.  I can't wait to do it all over again fall semester.  I met so many new people with different personalities, and I had so many different conversations on various topics, and I just socialized with regular people.  Going back to work a rewarding experience for me because I felt like I was productive.  I haven’t felt so good in a long time.  And it is possible to work and have PH!

In May, All Things Are Possible

By Kevin Paskawych

There is something in the air... and I am not referring to the pollen that constantly reminds me of why I actually “kind of” like winter. My allergies aside, there is something magical about this time of year; as my grandmother used to say, “May is the most hopeful month of them all.” I have to agree. May has always been a month of hope for me. Graduations bring the hope of new adventures, new jobs bring the hope of personal betterment, and new friends bring the hope of something more to this life. This year, my hope is for continued improvement with my condition and for a new life adventure that last year seemed to be on hold indefinitely.

Arguably, the hardest part of dealing with PAH is the fundamental lifestyle change that most of us have to endure. What was our daily life is quite often thrown out, and we are forced to adapt to what is so often called our “New Normal.” Activities that we once knew as routine can be forbidden. And for some of us, working and even our hobbies become impossible tasks. Having to make so many changes so quickly can be depressing, and I have heard more than one patient comment on how their work or hobbies—activities now forbidden—were the reason for them to be alive. It is easy to feel the pain in a statement like that; it is harder to understand that all is not lost, and, especially at this time of year, there is hope.

Perhaps it is fitting that World PH Day is in the month of May, particularly for younger patients. If May is the most hopeful month of them all, then I believe in a beautiful symmetry with being a part of the generation of PHers known as “Generation Hope.” We have the hope of new research, new findings, and new medications that are working towards giving us longer, fuller lives. We also have our peers and their stories of improvement, their stories of overcoming obstacles many of us have, and their support as part of the group to get through the new challenges we face in our lives. For my own part, this May is particularly hopeful.

One year ago my fiancée Karen and I had to postpone our wedding indefinitely due to my then “unknown” condition. We had to stop our strolls along nature trails around Marietta and kayaking afternoons and bike rides stopped. We wondered if we would ever get to do these things again the way we once had. Then, we discovered that changes in life did not mean we had to stop life. Kayak trips became fishing trips from the shore; nature hikes became light strolls through the neighborhood. We didn’t let PH take joy from us; we simply adjusted our activities and time together fittingly. We found our own hope in finding things that I could still do, that were adequate substitutes for what we used to do. We found hope in our doctors who diagnosed me, and worked with both of us; we found hope in the medications, and how quickly I seemed to respond to the various treatments. Finally, we found hope when the doctors agreed to release me for pulmonary rehabilitation. One year after we initially postponed our wedding, Karen and I were married this past weekend. We have found yet more hope in the month of May, and we have hope aplenty for the time to come.

May is an amazing month, and I believe it can prove to any of us that hope is there, that joy is there. We have to find it for ourselves; the path of one is not necessarily the path for another. In my case hope came from my improvement while on medication, the joy from finding new, more easily doable hobbies and pastimes; and being able to do that which had been postponed last May. The year takes shape this month. As the days get longer, the weather gets warmer, and we see the rebirth from winter’s cold grasp. This is going to be another year of hope; that there will be new research, that there will be new therapies, and that we will all have a good year. May is the month of hope. It is the month of rebirth. It is the perfect time of year.