Breathing Hard & A Loss

This past week was a bit of a rough one for me breathing-wise. Not only the weather bugged me most of the week, but I also felt rather bloated for a few days, which caused me to be so short of breath that talking on the phone or to someone was a problem. Even just laying in bed was hard. It almost felt like the days of yore when I was growing up and not on meds to treat my pulmonary hypertension. It sucked, and it gets a bit depressing. I hate when I go through periods like this. It reels me back to wondering if the PH will actually worsen like that for real one day, and not for a brief interlude. I'm doing better now, thank goodness, but the days when I was really feeling crappy were very much downers. Sometimes it's just so very hard living with this disease.

I have met so many different people with PH both in the real world and the online world (funny how there are 2 separate worlds in my life now!). It's awesome when those 2 worlds collide together and you can actually talk in person to someone you got to know online who is going through much of what you're dealing with, too. Well, anyway, years ago a Mexican woman named Mariana came onto the boards. She posted with many questions, and we became phriends, chatting online or emailing often. She was such a sweet person! Many of my phriends were able to meet her at the PH Conference in Miami, FL. Her smile was so infectious! Eventually she told many of us she wanted to take a more holistic approach to her PH, and we all seemed to lose touch with her. At the beginning of this month, she posted on the PH board, and so many of us were happy to hear from her! This past Monday, she came into the chat room, and talked with us for a long time. She seemed in good spirits. She told us of a scratch she'd had for awhile that seemed to be leaking fluid, and we urged her to seek medical attention for that asap. She agreed and said she would do that the next day. Chat was winding down, and said her goodbyes and we told her to come back to chat any time. On Friday morning, I found out that she died. It was so shocking, and really upsetting. No one knows yet exactly what happened, and I am hoping to find out, but not sure if we'll really get an answer. I don't know if her PH was really bad, or if that scratch was really infected and got terribly worse? It's just so heartbreaking to know that in the beginning of the week she was with us chatting and laughing, and by the end of the week, she is gone. It's situations like this that make us really truly hate PH and declare it so unfair to anyone who has it. My thoughts and prayers are with her family, but this also makes me pray even harder for a cure!


Anonymous said…
I know when we have those realy rough days it is really scary!! I think it makes us appreciate the other not so bad days even more.
I was so shocked as well to hear about Mariana, she had emailed me a few times when she first stopped teh boards and was doing really well it sad..Hope this week is much better for us all..Love ya lots!! Hugs :)

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