It’s day 2 after I broke my record, receiving 18 steroid injections in my hips, bottom, arms, shoulders , neck and head. I was up and out the hospital like a whippet (that’s the dog I want). It was slightly entertaining after my Dr managed to break 2 needles off the syringe spraying me with anaesthetic and steroids TWICE, shouting Bastard and then blaming the needles saying they were crap. I whilst laying there with my knickers taped in a fetching manner just giggled.
Anyway, back to my point. How am earth am I going to become Wonder Woman and by this I mean physically because I am already WW by working full time, bringing up Hattie alone and living in Pergatory?
The good news is I am currently pain free hence the 2 month window of when the steroids are working but then when you you think it’s all going to plan, that curve ball always (and I mean always) hits me like a ballistic missile and I have to go back to Project Management and guess what re-plan or at least add in some more risks and issues and some finger in the air mitigation…..
My local rheumatology department are being absolutely shit and not managing my meds because they think I have a neurological autoimmune disease so guess what they have referred to another NEW neurologist where I will have to repeat everything again which would be about the 100th time in 10 years. To prevent me having to listen to another patronising person who could be 25 years younger than me (please don’t get me wrong, I respect all people medical but it gets so exasberating going over and over things), I took the decision to go back to the Neurologist who diagnosed my Sjogrens or rather said I cannot label you completely because you have a mixture of things irrespective of whether BUPA would approve it (which they have). Did I say I paid £7000 to be diagnosed because it was stated at pre-existing and the Nhs couldn’t work out the right approach to diagnosis. I can’t afford that and no one knows except my parents and now anyone that reads this.
So my latest status is:
- Dr Malik my neurologist is not impressed as the RSCH are not managing me properly as the fatigue and pain are impacting my head, job and most importantly my free time with Hattie.
- I have been referred (it’s comedy) to a specialist rheumatologist Professor in London who is an expert in neuro and rheumotology with main focus on Lupus amd connective tissue.
- I’ve had to stop my immunosuppressants so we can baseline me when I see Prof D’Cruz.
Risk – I could relapse further than my current crappy baseline with the withdrawal of my medication. Already my face is starting to feel weird in the nerves in my cheeks.
Mitigation – Go and live on a desert island which has a plug socket so I can listen to music – kidding! I will have to mitigate on a daily basis!
Issue – Prof D’Cruz isn’t available until August which could ruin the 2 month window of when I can become WW!
Mitigation – go back to my neurologist and see if he can expedite or recommend someone else.
Mitigation 2 – start my meds again!
Plan as at today!
- Be mindful and take each day as it comes. This is hard for me as my OCD and paranoia sends me into mental breakdown and unless I’m in bed I don’t stop.
- Start my meds again because I am starting to notice the difference already and I can stop in July hence giving me the opportunity to keep going and becoming WW.
- Start physio and Ultra-G aggressively next week.
- Use the exercise bike daily but on a slow ramp up.
- Ask you all to support me and give me the drive to do this.
- Cuddle Hattie as much as I can!
- Ask for help (I don’t think I’m very good at explaining how bad it can be, only my cousin Holly gets it).
- Retrain myself to squat when picking something up instead hinging down and showing everyone my arse!
I want to be clear that in no way am I dissing my friends or medical people in my blog. I was told I was unlucky once at having 2 rare diseases completely unrelated and I never know how I will be each day so how will you. X