I've written before about my fucked up (& mostly dead) family.
Mumsnetters helped me hold it together over Christmas. My dad died a year and a week ago. My sister died a few years ago and it's the anniversary of her death today.
I'm severely disabled, started to get ill 5 yrs ago.
The whole thing has been a living hell as my parents have shrouded all family history in mystery and silence. And deliberately lied about stuff that would have helped me and my sister, and my dad too. My mother has been particularly cruel and that's what my other thread was about.
Just had a call from a diagnostic service I gave a tissue sample to a few years ago when I got my first diagnosis. They've found a genetic abnormality which might mean I have something different from what I thought. It's in the same ballpark but from first glance it's more serious. I'd always hoped I had the mildest type of the original condition I was told I probably have. But this new one doesn't seem to have a benign type.
I don't know why I'm so shaken up. I knew everything was blurry and best guess as I have no access to my sister or fathers medical records.
She asked me if I could get my mother to give consent for them to access my dads post mortem. And they're hoping there was a saved tissue sample so they can run tests on it to see if he had the same genetic variation. It would help a lot in how my condition is managed and treated. And my little boy.
I will try and have asked them to send a letter explaining why they need access. But my mother won't. Just like I was blocked before. I really want to leave it all behind but I can't.
Oh god.
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General health
Shaken up. New news & bad timing.
MiscellaneousAssortment · 13/01/2016 13:27
Thanks 
In answer to your question ThumbWitch ... I want you lot to tell me I'm an idiot and beat me round the head with the phone til I answer it please?!
Gently though, I'm not a complete idiot 
. Or involve a wet kipper rather than a mobile? I'll leave the details up to you.
I thought I was having a few days break from it all, relieved my small victories and getting my head out of the unrelenting doominess of it all. A break. Focusing on work stuff etc.Then I noticed I wasn't feeling in a very 'break-y' mood, and I realized why... Not break-ing, I'm avoiding. Crap.
I now realize why I've had icy slime in my stomach because I'm avoiding that call. It makes sense I guess, as look where picking up the last number unknown call got me... But I know it's stupid. Superstition.
I know I'm being stupid and making things harder for myself than just dealing with it. Helps to hear it.
It's weird and tumultuous... I have been falling back into thinking I'm over reacting and I have to convince hpcs to do anything or help me instead of minimizing everything. Am so used to living with the veneer of no action and minimizing my reality... And now I'm scared that's what's going to happen, and scared that it's not going to happen.
I haven't contacted GP or the cardiac consultant yet. Still.
C'mon missy, you need to organise. Ostriches are all very well out in the African savannah, but not too good in the suburbs of the UK.
I am the world's worst procrastinator - still haven't had my barium swallow that I was given a referral for last May, for e.g., but that's because I realised that my sliding hernia is probably due to my vast belly, so I'm working on getting rid of that first
- and I too know that it never helps to be one. BUT! You need to do these things because your health is (sorry to say) in a far more precarious state than mine is (gross assumption - I don't know whether my hernia is just what I think it is or something far worse!) and it's not going to get better by itself.
Now here is my next suggestion. You can do it on a thread here if you like, maybe start a new one for it, if you want us to tell you how shocking your day has been or you just need support/input - do a daily diary. A diary of how you've felt, how your pain levels have been, what challenges you have had to face. Daily (or at least as many days as you can manage, but aim for daily)
This diary will be something that you can use to show the HCPs you deal with, exactly WHAT you deal with and are up against. It will mean that you don't get to minimise your condition in the moment, because you have a history of how shit some days will have been. It will also remind you of what you're dealing with daily, and hopefully, if you can switch your mindset to this way of thinking, will give you a reason to be in awe of your own ability to cope. Because you ARE awesome - you've managed and managed and managed, and done amazingly well, despite your pain and tiredness and fear and everything else - but it is time to let people help you. So write it down, let them see it, let them realise how much you really do need the help.
Remember! You are worth it
And have some more
. And and probably 
. xx
Nah, I got your cold-caller this morning!
Sounds like the doctor was concerned for you (rather than for the HCPs), that you might not receive the most effective care if HCPs miss something amid the detail.
It's all so recent and ongoing that the whole story of how you got to now must be one, big swirling list of This, and then This, and oh god This, going round and round at the top of your consciousness, and it's really hard to select specific info for a specific appointment, not just brain dump the lot.
I imagine it'll take a while for all the stuff you're processing to settle into a short narrative that you can draw on where relevant, without getting completely swept up in painfully reliving it.
Would it help to make a plan beforehand: What is this appointment for, and which bits will be relevant? (Probably teaching my granny to suck eggs there.)
I can see the doc's point of view, to some extent, because they don't want you to dwell on the past when your needs are very much based in the present and future; but OTOH, that timeline you did is very relevant.
So have you typed it up yet?
There is absolutely no harm in giving each person you see that timeline - make it as bullet point as you can. if you haven't already done so - because it is useful family history. BUT you don't need to discuss it at every appointment, just have it on record so that the docs can see it, read it if necessary but what they can't do is claim ignorance of it.
Back to the kipper - you are NOT "over-reacting" to anything. You NEED this help, you NEED these appts. and you NEED them quickly.
For the letters:
Dear HCP
I just wanted to ensure that you have been passed the relevant information regarding my diagnosis, which has now changed to XX. My understanding of this condition is that it is more serious and life-threatening than the previous diagnosis, and the drugs I would require are different and need to be updated as soon as possible to give me the best chance of survival.
In light of this, I would like you to expedite my tests and appointments as much as possible, so that I can access the correct treatment for my actual condition sooner.
Thank you for your help and consideration
Yours
Misc
Change as necessary, but does that help?
for you, lovely.
Oh yes you can, but maybe not at this hour.
Get your breathing under control, which I know is hard, and relax, tomorrow is another day, we are here for you, we will help and hand hold. ( and came out as Abdul on my autocorrect.. Possibly not what you want..)
You've had a major triumph this week, remember that, and smile.
Misc - do I have to wield the kipper again? Write it down. Take the new diagnosis letter with you.
Write down what this new diagnosis means to you, as far as you know.
Tell the GP that this new diagnosis needs urgently addressing, in terms of drugs/therapy/testing etc. (WRITE IT DOWN)
WRITE EVERYTHING DOWN.
Then, if you freeze when you get there, or burst into tears (entirely understandable), you can just hand over the paper and he can jolly well read it.
But definitely take the new diagnosis letter in at the very least.
(((hugs))) - this is your chance to start things rolling. Please let go of any feelings of shame - you don't need them. Just write everything down that you feel is important NOW, so the GP doesn't miss anything.
Good luck, lovely - you can do it!
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