Re: Dealing with the emotional stress of PFS

September 6, 2006

I know what you all are talking about too ... it does get very difficult

to deal with as often as we all do. And people who don't have a child

with PFS just can't understand what its all about.

I have a very large family ... 1 brother and 6 sisters. I no longer speak

with 2 sisters because they feel I exaggerate because they can not

comprehend what me and my family goes through on a daily basis with our

son.

Mason has PFS, and intestinal issues (which brought on several surgeries,

one major to remove a segment of his intestine), acid reflux, asthma and

now we just found out that his teeth have begun decaying from the inside

.... the Dentist is baffled and so are his Doctors at NIH and CHOP. None

of them have any idea why his teeth would decay this way and none want to

say what it may be from ... whether its PFS-related, or due to his meds.

.... and we tell family about it and they just act like we are

over-reacting. Our son has 5 bad teeth ... all happened at one time and

they think us being upset is over-reacting?

I just don't get people, especially family. My own Mother is very

unsupportive since my son became sickly. I had always thought that family

draws together at such times as this ... but that's not true for all

families. Currently, I'm not speaking with my Mom and its tearing me up

inside because though she is so " way out there " most of the times ... she

is still my Mom.

I try and do a lot of praying and/or arguing with God. It helps me

through everything ... I also talk to my hubby a lot, and one sister who

is very supportive too. I also started CarePages for Mason ... allows me

to vent a bit and that helps. I also now started knitting ... very

relaxing and my girls are even getting involved in it. And sometimes I'll

resort to a glass of wine and a hot shower ... we can't forget to take

care of ourselves. I learn that lesson way too often when my migraines

hit!

Take care.

Heidi

Mommy of Mason, and Amber

Pennsylvania

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