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    • #25905
      Colleen Steele

      Try as we may to be compliant I think we all might have one thing that we could improve in self-care. Is there something you should or shouldn’t be doing that you don’t tend to ignore, procrastinate or cheat on?

      For example, maybe you consume more salt than you should or you don’t hydrate enough. Do you hold off on making certain appointments? Are you using supplemental oxygen as often as your doctor has recommended? Is there something I didn’t mention that needs more attention on your part? Share your thoughts

    • #25913
      Jen Cueva

      Self-care is so essential @colleensteele, for patients and caregivers, both. I tend to space out my appointments when I can. I am excellent with labs, as I know that helps me stay out of the hospital. I tend not to focus on my other appointments as much as labs and PH. Dentist and OBgyn are 2 that I know that I leave after my other 4-6 doctors.

      What about resting when we know that we should? I am guilty as charged but am working on this, too. Which would you say is the one that you could improve on? Your appointments are much better, I have noticed. Are you resting and sleeping?

    • #25924
      Colleen Steele

      Well, I’m getting better at keeping doctor appointments for myself but procrastinating on some tests it’s been suggested I have done. Guess I better work on getting those scheduled. I am way behind on my OBGYN appointment. For some reason that is one that I have no qualms with delaying.

    • #25927

      I was diagnosed with IPAH almost one year ago and admit that for me diet is the prominent issue when it comes to self-care. I have had a lot of GI side effects and tend to fall back on the remedies of my childhood, chicken noodle soup, crackers, etc., all full of salt and not on the IPAH diet. I can only eat between 10 a.m and 5 p.m., otherwise symptoms keep me up at night. I simply cannot trust my own body these days. A recent bought of diarrhea in my sleep has taught me that hard lesson. It seems I am trading shortness of breath for other problems.

      However, I am feeling so much better, it is like a miracle. Shortly before diagnosis I felt certain I would die before the end of the year if something did not change. Now, I am able to take a set of stairs, wash my car, garden, etc…small feats that feel like a victory…but I know that I am consuming too much salt. I have taken, and continue to take, furosemide daily. I know it is time for me to concentrate on changing my diet, but my cravings are overwhelming sometimes. I am mad that I am so limited in my eating. My ultimate meal pre-IPAH, cold boiled shrimp and a cold beer, are no longer even appealing to me. It is so frustrating. Simultaneously, my desire for appropriate foods like fresh veggies and salad have waned. Those things that I should be eating almost always make me sick.

      I am trying to do better. I recently went through some materials on diet etc. and realized the answers to many of my questions regarding IPAH have been in my possession all along. I was simply too busy trying to learn how to mix medications, battling side effects, and trying to maintain my workload, to do the necessary reading. Maybe denial??? I have been sick with side effects and exhausted.

      Covid 19 has been a Godsend in some ways. Providing time I need to slow down, appreciate each day, and reassess the goals that are really important. I am off for the summer from my job with our local school system, giving me some much needed time to do the right thing. I no longer feel guilty that I am “lazy.” I feel justified in being tired for no apparent reason and try not analyze why one day is good and the next is not. Pre-IPAH, I was a pragmatist, isolating the variable and trying to ferret out the scientific why of every issue. Now, I am more accepting of the unknown.

      For me the next step is a better diet and consistent exercise. I am alarmingly optimistic, or maybe still in denial? But either way, I take one day at a time. I might not always do the right thing, but I start over each day and do a bit better. I am conscientious in a way that I was not before my diagnosis.

    • #25944
      Jen Cueva

      Hi @colleensteele, WTG on improving self-care! I think that most of us women do leave the OBGYN last-hehe. You are making progress; next, you will get to that, hopefully!

    • #25945
      Jen Cueva

      Hi, @whitesandsgirl, I am sorry to hear about the GI side effects. Unfortunately, I am aware that many of the PH medications can cause these. It sounds like you are educated with what you need to eat. It is still not easy to do when you’re exhausted already.

      Your improved health is a blessing and I am happy that you can share with others.

      I am grateful that you have some downtown. I hope this is helpful. Working while you are so exhausting cannot be easy. Shrimp and a cold beer sound good-hehe.

      My tastebuds have changed since staring PH medications. I have other coexisting illnesses, so I am sure that comes in to play, too. What about you?

      Let us know how we can help you as you work on making better choices. As you said, we can only take one day at a time.

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