Awww . . . one of my favorite children's authors, Dr Seuss. The thought of Dr. Seuss books brings a big smile to my face, and comforting thoughts of happiness from my childhood. I've re-experienced all that happiness again as I read these treasured books to my children and now again as I read them to my Grandson.
One of my favorites is One fish, two fish, red fish, blue fish. Oddly though, this particular book reminds me of my feelings of my CF - always feeling like a fish out of water.
I've always been considered 'so called mild' if there is such a thing, until these past 7 years. In the past, I tried to fit in the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on.
Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular medical routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going to gatherings. Cross contamination continues to keep me away.
I've always been considered 'so called mild' if there is such a thing, until these past 7 years. In the past, I tried to fit in the local support groups, education days and clinic social interactions but I felt out of place. I was usually the oldest and dealt mostly with parents of CF kids. Any other adults I knew got sicker and passed on.
Of course the parents wanted to know what I was 'doing' to stay so healthy. In reality, I had all the same regular medical routines that their kids were doing. I would feel guilty that their children were sick all the time and I was living basically a normal life. It actually made me feel worse to attend functions, seeing the very ill children. As much as the parents saw hope in me because of my age, I knew I was never as sick as their children and that we were in totally different spectrums of CF. I felt disconnected to the CF community, so I quit going to gatherings. Cross contamination continues to keep me away.
On the other hand, I didn't quite fit in the healthy, normal world either!!! A lot of acquaintances don't even know I have CF, which I feel is on a 'need to know' basis of who I tell or not. For those that do know, I continually minimize situations. I rarely talk about what I'm going through. When asked I hedge and hide trying to carry on my past of normal living. I'm certainly not one to whine and complain about my aches and pains. I even hide things from my very supportive husband because I sometimes feel like a basket full of problems.
My point is, for me it feels very weird and foreign here.
Here meaning this site and this blog.
I have opened the lid of my box just by coming here, spilling for all to see. I feel the need for support and understanding from those in the know. I want to learn the latest and greatest from those who live it. And I believe I've found it.
I'm in the fishbowl, swimming with all the rest of you who call this forum home. Think I'll stay and float awhile.
Favorite Dr. Suess Quote:
"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."
– Dr. Seuss
My point is, for me it feels very weird and foreign here.
Here meaning this site and this blog.
I have opened the lid of my box just by coming here, spilling for all to see. I feel the need for support and understanding from those in the know. I want to learn the latest and greatest from those who live it. And I believe I've found it.
I'm in the fishbowl, swimming with all the rest of you who call this forum home. Think I'll stay and float awhile.
Favorite Dr. Suess Quote:
"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."
– Dr. Seuss
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