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COPING WITH PAH: Patient & Caregiver Diaries
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Patient Diary -- Franny Marks
franny.marks@gmail.com

Monday, June 26 2006

Hello

I've been battling depression lately so feel the need to reach out.  I cannot talk to the people I know about this.  They do not want to hear it or understand it.

After a couple of years of this, most of my friends have headed for the hills.  They don't understand why I don't do more, walk more, find pleasure in some of the things I used to like to do.  I've gained weight which for some of them is a cardinal sin.  I feel judged.

It's a bitter pill to feel so isolated with this disease.

I still work part time and that has helped me stay connected to something.  But I worry about my future.

Don't get me wrong, I do try to keep a positive mental attitude, but the fears about the future have a way of creeping in and sneaking up on me.  It's hard to explain.

I hope this diary helps.  I need a place to express myself honestly.

 

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Monday, July 3 2006

Loss of Friendships

A couple of friends came to pick me up recently for a lunch outting.  As I sat in the back seat, they chit-chatted about some recent experiences where they were helping the less fortunate.  One complained about how frustrating it was to deal with the sick.  The other friend had a similar complaint about her elderly father who took ages to get in or out of the car.  They laughed about it.

I just listened and made no comment.  I was clearly on the other side of a vast divide.  I cannot walk as fast as these two and their comments made me so uncomfortable.  They know I am impaired.

When we got out of the car, I had to work hard to keep up.  Heaven forbid I spoil their day, take too long to get down the block.  Heaven forbid!

The lunch chat went nowhere.  I wanted out of there.  This was not the kind of support I need in my life.  I had pretty much nothing to say.

These two women are church going gals who think they are open and giving.  I think they are deceiving themselves, but hey, we all do that.

Given that there are always at least two viewpoints to any story, I think if you asked either of these people what was wrong, they would say I was ungrateful for the lunch date.

They would be at least partially right.  I was not feeling at all blessed.

I used to consider these people friends.  That's the hard part. 

 

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Tuesday, July 18 2006

Trying to find my way

I apologize for not being more revealing about myself and not sharing a lot of details with you all.  I'm not sure I want to do this diary at all.  With all the internet tools these days, it's scary to be so out there, you know?

But I will do the best I can.

I'm in my mid sixties and living a quiet life with my husband.  He's a quiet man, not given to emotion very much.  I suspect this is due to his upbringing when the only emotion expressed regularly was anger.  He decided early on to skip emotions entirely.  I don't think my illness has really touched him, but he tries to be helpful in practical ways and I do appreciate that about him.

I've become somewhat reclusive even though I'm around people quite a bit.  I've lost some really close friends to illness and misunderstandings and I am working on making peace with those losses.  It's a work in progress.

In many ways, I feel very close to being more centered and more peaceful than I ever have before.  Everything in the end has to come from within; it really does not matter what others give or do not give.  In the end, it's up to us to make our own way and blaze our own trail.

I'm just trying to find my way.

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