Another hectic couple of weeks with frustrations, happiness, excited, nerves and a millions things to do and going on. Really where to start?
OK lets start with the rubbish stuff, a neuro appointment that left me in tears. I knew after my surgery that my surgeon told me that a very small slither of Amos was left in my head, I know my memory is rubbish but I definitely remember that. I also remember the neuro appointment in November where the consultant told me nope it’s all gone. Turns out he got his words erm wrong!!!! There is still a slither of Amos left behind and it was a bit of a shock, I think that what makes it worse is knowing that it will probably grow back over time and that is a terrifying thought for my not always working properly brain. I don’t know if I can go through all of that surgery and recovery again, I know I will but I know I definitely don’t want to. Now here’s the thing, in the words of a phsycopath, don’t tell a brain tumour patient/person that at least it’s not cancer, it upsets them and makes them want to punch you in the face.
Next is business, still almost ready to go and still waiting for a launch date but still getting the recordings done and still loving it, even more when people contact you asking for help and then telling you they feel so much better. It gives me the knowledge that I am absolutely doing the right thing.
Next the CBD news is EVERYWHERE, as of 1st November 2018 Dr’s are allowed to prescribe it, or are they really? No they’re not really, specialist consultants can prescribe it and only once their patients have tried all other chemical medications at all doses and failed, it would take me 5 years to go through all of those medications before (assuming I can find a specialist consultant) I can be prescribed. I know I’ve ranted about this before and I will probably rant about it again but that’s fine and the rant is worthy (in my opinion). I spoke to the epilepsy neuro woman and she rolled her eyes at me before telling me she is too lazy to learn about it, don’t think I’ll be bothering with her again. Then I spoke to my new GP about it and was amazed that she was brilliant about it, wants to learn as much as possible so that when the time comes she can prescribe it, what a fabulous breath of fresh air she is. Then we got onto the chat of my vile medication, happily 11 weeks with no seizures so I am going to be starting to reduce my medication, very slowly, very very slowly, but she told me as an adult that is capable for making my own decisions, Hurrah I feel like a grown up again, first time in ages, it feels good.
It’s so easy to forget how much has changed over the last 18 months (or so) but putting it into perspective it’s pretty incredible. I was fine, working, driving and living a fast paced busy life and earning a pretty good income, then bang a brain tumour diagnosis on the back of what I thought was a funny 5 minutes, nope that funny 5 minutes was a seizure. Bye car, bye work, bye normal life. Surgery, scary, painful and actually more scary than haloween (I don’t like haloween, really). New scary start, rubbish at doing nothing so reading, studying and learning new skills. New start is a new business with my new skills and hopefully teach and help others to do what I’ve done. I get told often I’m an inspiration, I don’t see , and I really mean that but I am determined that this thing will not get the better of me this time, next time who knows but this time I’m staying in charge. Taking control of my medication is a massive part of that and again I have to remind myself what I’ve achieved, no more pain killers, no more contraception (because that is bad for hormones), no more anti depressants (never wanted those buggers anyway), get to grips with brain fog, eyesight, improve memory and concentration (that’s coming). Things are definitely on the up and that’s exciting. I have my inspirational people and they give me a backbone when mine has given up for the day, these are people who I would never have known if it wasn’t for this awful thing and I thank my lucky stars that they are a part of my life. One day we will all get together and drink wine (or gin)
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