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    • #22934
      Brittany Foster

      This could apply for parents, caregivers of PH, or anyone that is going to appointments with their PHer or the PH patient themselves: My biggest question lately is, how do you balance appointments and work at the same time? I know that when I was in my prior job as a teacher there was NO WAY I would have been able to make many of the appointments that I have. Most of my appointments are during the day time or morning hours and I just wouldn’t have been able to take all that time off without getting penalized for it.

      There are so many days that my mom has to take off too in order to drive me to appointments since I have driving restrictions right now. I think about the time that she is missing, but luckily she has accumulated sick time over the years of teaching.

      I am just wondering how everyone balances work life with appointments? Sometimes going to appointments (on a busy week) can really feel like a full time job and by the time I come home I am just too exhausted to do much of anything.

    • #22968
      Jen Cueva

      Hey Brittany, I have found myself asking this exact question. This is a tough balance and I wish that I knew the answer. Lately, I have been struggling with time management. I have been trying to set boundaries because I have found that my body has been beyond exhausted.

      I have been trying to schedule my writing and work hours for a few hours each day. Some days my body is too exhausted to tackle much of anything. But, as you mention, weeks like this coming week, with 3-4 plus appointments it does not work. I will go to my appointments and work when I can in between rest periods. The appointments will suck most of the energy that I have.

      I hope that we have some better tips as I need them, too. 🙈Now, if only I was better at setting boundaries and rest when I first notice that my body needs to rest. Giving myself that permission is something that I am working on.

    • #22983
      Brittany Foster


      totally true. And it’s important for both of us to remember that we can run on an empty battery and we reall’y can’t pour from an empty cup. If we keep giving everyone else our last drops of things then we will be stuck with nothing. As much as that says a lot about who we are as people and how caring we are, it also shows that we are just doing the exact opposite for ourselves and that is not self care. I guess we can both learn as we go and share tips and tricks when we find ourselves getting there or notice things that seem to work.

    • #23005

      I am having a rough time with that also. Bronchoscopy result is sarcoidosis. Waiting for appt with new cardio re the PH and now my knee has given out. Going to ortho today. In between pcps so original cardio dr did paperwork for fmla for me but I hate missing time – using my pto up and it’s just a pain . Wish I could retire but not there yet but worrying about work and health is a major pain. Brittany you are so young to deal with all you are .No answers here but right there with you on this issue.

    • #23009
      Colleen Steele

      Lynn, it sounds like you have been through a lot lately too. I’m so sorry that on top of it all your knee is giving you pain. I wish you luck with your new doctor. Let us know how things go.

    • #23018
      Brittany Foster

      Lynn ,

      What exactly is sarcoidosis if you don’t mind me asking? Are they thinking that this is what is contributing to your PH? I know that it is so hard to miss time. It is good that there are programs so that we don’t get penalized when taking days out of work. When I was teaching and had to miss so much time one of the major things was that I couldn’t get paid during that time because I didn’t have tenure as a teacher because I was new. People were offering to donate their sick days to me so I could get paid but it just wasn’t allowed.

    • #23044

      I am very fortunate and the hospital and all my doctors are between 15-20 minutes from my work. I try to schedule my appointments as close to lunch as possible or the last appointment of the day. That way it is less noticeable at work. It is tough in a corporate environment wearing Oxygen 24/7. You don’t want it to be noticed that you are also running to doctor appointments all the time. Taking a long lunch or slipping out a bit early is not really noticed. I also try to schedule multiple appointments in one day (back to back if I can) then take a vacation day. Unfortunately most of my doctors want to be seen in order. (so they have time to see the previous notes)

    • #23047
      Brittany Foster

      @chrystal-eckman I am sure that helps you out a lot. It works out that your doctors and appointments are pretty close to your work. I used to teach and when I would have a longer break period I would try to schedule an appt that I knew would be quick enough or I would schedule my breaks so that I would just leave at lunch and have the free period after lunch in case it took longer. But the more appointments I had and the more testing I needed done the harder this was for me to do. Luckily I worked with great people who would cover me if needed but I just couldn’t do it anymore and it was really hard for me to admit that.

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