Hello lupies!
I've been #laying low, for the last wee while, with my current predicament. And well I seem to be making things even worse - even though I'm as sweet as pie. 🍰
Good points - first time in the last week I've managed to go to work, had another new student who I helped show the ropes - I really want her to excel.
- I had my EEG done and after them frying my brain with the flashing lights (seizure activity sky high), and sleeping off the post ictal issues my brain is calm. That part of my brain is in rest mode, recouping, so I'm free of seizures for a couple of days I hope.
- spoke to rheumi and neuro for the umpteenth time, and discussed in detail the seriousness of side effects of both HCQ, aspirin, Lamotrigine. MAJOR BACKFIRE!
Bad points
- Neuro won't see me or speak to me, and labelled me non compliant and anxious. Now I have to attempt to go to the GP. - still trying to get a GP appt, 2.5-3 months after my first attempt, can't get past e consult or receptionists. I asked for an appt and receptionists said 'no' and hung up on me.
- rheumi are vacant, think it's neuro's job, that I'm seizing on THEIR meds. So still want me to stick to HCQ irregardless.
- my eyesight and hearing are increasingly bad. -my memory and weakness worsening. - hence the attempts at getting help. I've had eye infections that required hospital admission for some weeks as a kid. My Chilblain lupus is still flared, at least I'm not lethally hypothermic, I hit 35C today.
- my mental well-being and QoL is really getting pulled to the max.
PROACTIVE points
- I've had soooo much coffee today that I feel as high as a kite. Helps you deal with injustice and pain.
- I've sent an email to the health board, and made an official complaint about my GP practice, and this will either be resolved in 5 days or will go to the ombudsman. For them being unwilling to assist acute on chronic and help me access any help or service at all. No help, no meds, no nothing.
- I will need to, in the morning, if I get a chance, talk seriously to one of my seniors at work. I have been grieving over the idea of having to loose my job because it's all just getting too bad and I'm getting too damaged. I will have a serious talk in regards to the possibility of a back door entry, and just treat me or at least give me the correct medication in ED, so that I can get on by till someone takes some notice. We are often quiet in the morns (PROTIP) it's good to be sick between 7-10 am in the morn. (If you had to pick a time that is). They will likely say no again, and then I'm back to out of options.
I'm huddled and freezing in my double duvet, electric blanket entombra. But at least I had banter at work whilst being proactive in ED. Even ED won't take me 😔 as a patient and after all these issues, they won't want me full time after the yr ends. - I got the frustration outta my system with going into overshare mode and now I'm just trying to get on by to tomorrow.
P.s. found out that work, didn't even make the OHS referral, 1.5 months later. I'm like okay then, I'll keep on getting by with no support at all in place and no compromise....
But honestly hearing about everything that's going on to all of you at the moment, I am so privileged to know so many strong and courageous individuals, even if it is over this forum. You're a real credit, and bring real value into this world, and you are important and deserve the very best that life has to offer.
Bless you all,
Lottie