In a week that's been so full of sadness a simple conversation brought a smile to my face ... well sort of!
Me: what shall I get my friend for her 50th?
The husband: what did she get you?
Me: I'm 48!
Honest to goodness. Do men notice anything? Do they remember anything? Here is another:
Me to husband - when is our wedding anniversary?
Husband - July 23rd ( it's July 13).
Me: wrong
Husband - is it June or July?
Me: not telling. You were there. Remember!
Husband: you're trying to trick me
Me: ( sigh).
It's lucky I love him.
Two other young people I love dearly ( our daughters) will be home this week to attend their cousin's funeral. Telling them their cousin had passed away was right up there in the difficulty level. If I was playing a game I'd now have bonus points for having got through that. It's not something I want to repeat in a hurry.
To be able to attend the funeral, the FED ( favourite eldest daughter) and I have had to reschedule two doctor's appointments with the gastroenterologist (me) and with the interventional neuroradiologist (her). That's the doctor who saved her life and one of the ones who checks in on mine every so often. The appointments have been in place for ages, but when life gets in the way like now, we have to reschedule.
Making appointments (and rescheduling them if needed ) is a logistical nightmare for anyone with Cowdens syndrome or any rare disease for that matter. As constant monitoring is needed in so many areas, this task is not for the faint hearted. Simple patients become organisational experts, planning and re planning a number of dates to suit kids school schedules, work commitments, doctors holidays etc. It's a very lonely experience for most. You may ask why the doctors don't do it for us? Its simple really. All the doctors think someone else is doing the organising and coordinating and therefore don't offer to do anything themselves. In reality also, most of them have little or no knowledge of the condition and don't realise how " on the ball" patients have to be.
If you're lucky ( and I am), a good GP helps to coordinate most of it. but even in my case I do most of the research about what needs to be done and how regularly. I also keep tabs of where we're at and what's next.
If you're lucky ( and I am), a good GP helps to coordinate most of it. but even in my case I do most of the research about what needs to be done and how regularly. I also keep tabs of where we're at and what's next.
Just to give you an idea. At the moment for ongoing care I have a plastic surgeon, a respiratory specialist, a neurologist, a psychologist and a gastroenterologist. On other occasions I have needed a surgeon, an oncology gynaecologist, a haematologist, a thyroid specialist and a women's specialist. You get the picture. Add into the mix (in the last 14 months) my daughter's appointments and surgeries and you start to realise why at the moment I can not hold down a paying job.
A mother of a daughter diagnosed with Cowdens syndrome recently posted a heartfelt message on our support group page. With her permission I have published some extracts because it shows the frustration we all feel so well.
I'm really quite sick of this whole rare business, all the advocating, being blamed for health issues, not being understood and never finding any specialists who really get it or can answer your questions. I asked one about endo screenings and what age this may be necessary. She said "I don't know but ask your paediatrician ,after all she is the one that coordinates all your daughter's healthcare." Ha ha if I didn't want to be rude I would have fallen off my chair laughing. NO ONE COORDINATES ANYTHING, I do everything. If it was left up to them my daughter wouldn't even be diagnosed let alone getting any proper healthcare.
and
My daughter already has had so many health issues that apparently don't happen to children. I AM just over it at the moment and I guess it's been a long week. Sometimes I just feel so alone, it's like living on another planet and no one you deal with ever understands.
If you know somebody with a rare disease or somebody caring for someone with a rare disease, chances are that beneath the exterior someone is trying very hard to keep it all together. Just give us a smile and some leeway please. We're often exhausted, frustrated and as my friend says " over it".
Till next time...xxx
A mother of a daughter diagnosed with Cowdens syndrome recently posted a heartfelt message on our support group page. With her permission I have published some extracts because it shows the frustration we all feel so well.
I'm really quite sick of this whole rare business, all the advocating, being blamed for health issues, not being understood and never finding any specialists who really get it or can answer your questions. I asked one about endo screenings and what age this may be necessary. She said "I don't know but ask your paediatrician ,after all she is the one that coordinates all your daughter's healthcare." Ha ha if I didn't want to be rude I would have fallen off my chair laughing. NO ONE COORDINATES ANYTHING, I do everything. If it was left up to them my daughter wouldn't even be diagnosed let alone getting any proper healthcare.
and
My daughter already has had so many health issues that apparently don't happen to children. I AM just over it at the moment and I guess it's been a long week. Sometimes I just feel so alone, it's like living on another planet and no one you deal with ever understands.
If you know somebody with a rare disease or somebody caring for someone with a rare disease, chances are that beneath the exterior someone is trying very hard to keep it all together. Just give us a smile and some leeway please. We're often exhausted, frustrated and as my friend says " over it".
Till next time...xxx
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