So mummy tiger protective instinct kicked in this week. Its nice when a parent does one of those full on guttural growls in defence of their offspring, you see it on nature programmes all the time, and when I am said offspring, even better. Let me explain.
So, as you already know I was awaiting my next appointment this week for latest update on random disease that has thrown its dark shadow over my life in the past few months. I saw my consultant Dr Baynon last week and he was very concerned about the rarity of my condition, the correct treatment and was very focused on putting me to the top of his list (nice but even more worrying as it indicates that even in the most positive frame of light that its probably a worse situation than you were allowing yourself to believe!), and he was also the one who had pointed out actually how precarious my current state is, hence last weeks wobble and tantrum fit with the boiler. So there was I expecting an appointment through, following a referral from my doctors’ surgery. Now I need to explain that at this point I have now run out of my corporate Bupa outpatients cover so have to wing it with the NHS from here on in, desperately hoping that actually my condition is, as I was lead to believe, significant enough and worrying or intriguing or whatever checklist priority it is this week for them to actually see me inside of the next 3 months before telling me what the jiggery pokery and goblin magic comes next! That might sound selfish , but actually Im in limbo and until I know what Im dealing with and what the next steps are and the treatments might be its like waiting for eternity to come and clop you round the head after bouncing out from behind a tree like tigger in a great fit of suprise! Im also a project manager by trade and that means I like plans, next steps, logic, information and good reasoning!
Anyway, so Dr Baynon, aware that my doctor surgery had really not been at all helpful or particularly reactive up to this point (I was in tears regaling previous appointments to even get referred),was pretty horrified by the dismissive bollocks that Id got from one particular senior doctor in the surgery, had then promised to speak to him personally and get my referral within the week. Well I was not optimistic on his behalf and it seems I was again proved right about this particular doctors lethargy and responsivity. However, I called the secretary to find out how things were going this Monday and Tuesday, nothing, no fax referral (you need the referral from your local doc to get in to the right consultants again through NHS even if you’ve already paid thousands privately to get to that point). I finally called Doc B. Well - all I can say is he did call me back but it was very confusing, his previous very positive demeanour seemed to have evaporated overnight and he seemed reticent in actually answering any of my questions. What he did say though was that I was no longer to take any contraceptives, and that booze to be reduced as much as poss, take vitamin d super pills (they are like a 20000 unit to a typical daily 400units in standard vit pills!) nothing more. I was utterly confused. What about treatments and other specialists he’d mentioned........just wait for a month! (but no more explanation than that!)
So I called my mum, the lifeline I mentioned in a previous note. She’s an ex nurse, hospital theatre nurse and patient representative so she’s seen it all and a pro at dealing with consultants. Her response - “he’s fobbing you off, Im not happy have you seen a Endocrinologist” (a whattee what?) - “Erm no.........”.
Right then!!!!!!! (yes thats where I get it!!!)
Long discussion later and plan and numbers sorted she’s on the tigress mummy warpath - her cub is distressed and shes looking for answers!! Next day she calls me , “ Ive left him a message!” ........ end of evening .......”no, still no call back Im very disappointed I think this is the horrid problem with moving from private to NHS, Im appalled!” (Im not sure what to say) ......so more waiting and so I just struggle through a day at work today (whilst Im still signed off sick and unfit for work , Im on a phased return approach and its great cos I actually get to hang out with real people other than the cat and talk about stuff that’s not just me, and go for lunch like a normal person, just with a lot of pain and get a good telling off for doing too much which is quite standard in my world during these episodes!) 2 fab girlfriends cooked me dinner, natter natter etc etc, you know how girlys can be and then mum calls.......
“darling, Ive just spoken to him, he was lurverly!!” (note significant change of tone!)
So, this is where we are now: he hadn’t called back as it turned out he teaches local doctors surgeries and clinics about new info on conditions etc. I happened to be the case study and the doctors surgery this week and only last night just by some weird fate happened to be my bunch of reprobates in Islington. He apparently explained how extremely rare my case is, the obvious rarity of osteoporosis in a 35 year old woman and that this is not a normal strain/ form whatsoever. (the 2 others being older persons post 55 and post menopausal!) Under no circumstances should I be treated with traditional osteoportic drugs as these have not only horrid side effects, but are ineffective and dangerous as bring on other horrors such as infertility and such nasties! No contraceptives, no steroids, no toxic drugs of any description! I have to wait for contraception to clear my system and only then can they test for hormorne issues that may be a cause. I also need to give my ribs further time to heal better before any form of ‘hardcore’ treatment is even considered. He had consulted with endocrinologists it turned out, (tiger mummy v happy about this in particular) at the Royal Free as well as a bunch of other reputable knowit alls about osteoporosis, and they had advised this in the immediate term.
Now, it also seems that despite Dr B having a 12 week waiting list on NHS, hes going to see me in 2-4 given my ‘special’ case. (mum said he actually seemed excited to have my case which I can only think must be positive!) So all our worries about private to NHS seem in this case to be needless, but it is a very true fact that the beurocracy involved is maddening and he said that he was enormously frustrated himself by it to my mum! Its also a sidenote that he flamed my doctor for not responding to his request for a referral last week which still hasn’t been done, so its reassuring that there really are the most wonderful doctors out there, and that despite the nightmare blockages that the system might cause, they will go above and beyond to sort things out and this one really did do that! I feel very very lucky indeed. Thank you Dr Baynon.
So its no conclusion yet, I do have some vague idea of the next month, and its just a waiting game for ribs to heal, toxic rubbish to expel from my body and then and only then can we proceed!
So maybe now I will start getting more than 3-4 hours sleep a night, and actually despite everything, the wheels are turning again. Im taking some extra magnesium and calcium supplements as well now on top of all those painkillers and probiotics. More progress in that my bupa bills are also being assessed and Im also managing to vaguely do some sort of job, albeight conference calls, emails and the odd office visit for a few ‘critical meetings’. Its important for my sanity - really, Im climbing the walls and there are only so many dvds one can watch. Im being well supported by wonderful friends. It kinda sucks that its raining though, a tan would be a nice offset to some of this! What more can I say........? thank you all for all your wonderful mails, comments, texts........xx
No comments:
Post a Comment