i hate rolling news.
but this blog is precisely that. – a set of unrelated events and moments from the day.
- have felt that am now validated as a blogger as a few people have made contact with me and told me that they got value from it – and have similar health conditions, and sadly similar health service experience!
- have decided am gonna be proactive and argue back with the flannel am being served by the doctors…
- when they say nausea is from migraine and not chiari, will remind them that the DRUG cocktail is nauseating.
- when they say that an arachnoid cyst, AND a chiari malformation AND the fact that dad had a tumour removed 42 yrs ago from bass of his brain and top of his spine…may have NOTHING to do wit many symptoms, i will remind them these are lottery winning odds!
- when they try to play me from specialist 1 to specialist 2…will call a MDT – and will ask a local politician if need be to sort this farce out. But will NoT be compliant and suffer on at their mercy!
- i will trawl the rest of the UK for a neurologist who i like, who gives me a feeling of worth and i really did NOT get that on Monday. If there is a wizard in the south of Ireland or in mainland UK then i WILL call in anyone to have an ECR done. Trawl starts today on twitter – a gold mine of information!
- i have phoned and left a voicemail for my physiotherapist with a view to asking his advice – have always used him in the past, and trust his ethic. I want HIM to look for a specialised specialist – there is more than one condition in my brain…!
- i am also going to find out how i get a neuro-physiotherapist – as today, for example, i have had a very severe pain in neck muscles and back of head muscles. I know that i slept last night with the assistance of deep-heat patches..
- .1 on lower back
- 1 on neck and
- 1on the pillow to get heat into the scalp.
- i have a GP appointment tomorrow. POINTLESS – yes! BUT am going to make her pass me on …see an OT, see a neurophysio, think of overall me. After all she is quick enough to refer me away on…or should i say, quick enough to TELL ME to organise private appointments with A, B and C…….and to write prescriptions for unbelievable pain cocktail – yet am sure if asked how mobile i am, has NOT a CLUE!
- the realisation that you are your husband’s PATIENT is not a nice one. And am there lying at the base of the bed, so that my neck can extend fully, while he applies the deep-heat several times a day, and i “yeowl” in pain as he tries to unravel some of the painful spasms,
- have to POINT out to people that PRIVATE consultants are as variable as NHS ones, in terms of disinterest, disengagement and limited interest. The ONLY difference is, you pass a queue. That’s it!
- am going to invite people who are NHS savy, and cynical onto my blog. This merely highlights the inadequacy of the system. So far neurosurgeon, neurologist and NEITHER made any suggestions….last words of both “i need to study your scans”.
- the NEXT appointment that i attend, where the doctor has the ARROGANCE and disinterest to NOT have read my file, scan….i will show NHS-RAGE.
when i started this blog, had expected it to be about the process and journey through this surgery….little did i imagine would be YET another platform on which i have to complain about health care, duty of care, and abject FAILURE to care!