Weekly roundup

This week has been eventful in both good and bad ways.  On Monday I took my Dad to the GP for his memory test.  Sadly he did fail some sections and he’s now been referred to the Memory Clinic for further investigation, so it looks like the GP does suspect Dementia of some kind.  I can’t even begin to process the implications of that if I’m honest.

Tuesday I woke with a stonking migraine which I had all day.  Sod’s Law when the weather was glorious.  My coldsore turned nasty and, just when it was at the scabbing over stage, I developed another one right next to it.  There’s no need for it.  Zero needy-ness!  It’s now finally drying up but still cracking and bleeding every time I speak or eat!  At  least I’ve stopped feeling quite so fluey though – I was proper rough for days.

On Wednesday I had to give a 10 minute presentation at Camera Club on my favourite pictures of this season.  I took the opportunity to educate my fellow Photographers on Ehlers-Danlos Syndrome, showing them a simulated picture of how severe floaters affect my eyesight and how frustrating this is as a photographer.  I also took along the little leaflet I’d designed and was delighted when several members took one away with them and a further few asked me all sorts of questions.

Photo of floaters in visionI had one of the nicest days of my year so far on Thursday.  My Camera Club had arranged an afternoon out at a nearby beauty spot.  The spring weather was glorious, the company was great, we had a lovely potter around and then sat outside to eat lunch.  I wish I had the energy to do things like that more often and wasn’t quite so crippled with pain afterwards.

It’s been a month now since my GP wrote to my local hospital asking them to transfer me to Newcastle for my operation and I’ve heard diddly squat.  So I chased up the local hospital only to find they’d “never received a letter from my GP” and had no idea I wanted to be transferred.  I was absolutely furious, not only that the process of being seen in Newcastle hasn’t even started yet but that a very private letter containing personal medical details has disappeared to God knows where – how is that allowed to happen?!  The consultant’s secretary said it was up to my GP to write directly to Newcastle to refer me, whereas my GP had said it wasn’t her business and it was up to my local hospital.  As a patient it shouldn’t be up to me to chase this up or sort it out FFS!

I explained how concerned I am, being as though this mass was found nearly 5 months ago and cancer is suspected.  She said cancer is not suspected and I am not being fast-tracked.  I said that’s not what the consultant said in February, when the ultrasound had shown I had a complex cyst, my CA 125 result came back at 112 when it should be under 35 and that he was bumping me up the waiting list for surgery.  She didn’t answer that and said she’d chat to the consultant that afternoon and ring me back.  Only of course she didn’t.  I have no clue what business it is of admin staff to question my diagnosis or the urgency of my care.  I rang my GP again and asked her to re-send the referral request so it’s back to waiting.  It’s just not good enough and if this cyst turns out to be something sinister I will create merry hell.

On to more positive news.  Dr Afrin, arguably the world’s leading expert on Mast Cell Activation Disorder, has written a book on the subject hurrahhh! 🙂  Available from UK Amazon and USA Amazon but currently only in hard copy.  I’ve ordered mine so will let you know what I think when I’ve read it.   He also took a seminar for Doctors on the disorder down in London a few months ago and I’m currently investigating whether a DVD or recording is available of the event.  I do wish the World Health Organisation would hurry up and formally recognise MCAD as a disease so that the NHS would at least be forced to accept its existence.  If you have MCAD you’re supposed to be monitored twice a year – I haven’t seen anyone since my diagnosis in 2013 as I simply can’t afford any more private consultations with Dr Seneviratne even if I could cope with the 600 mile eight hour journey involved.

Wednesday was the 5th anniversary of the day I adopted Bertie.  He is exceptionally hard work to look after and takes up all my money but he is also the light in my life and I can’t imagine my days without him.  As I type this he is asleep between my legs on the bed and I’m getting a crick in my neck balancing my laptop on my right thigh and trying to type at an angle 😉




11 thoughts on “Weekly roundup

  1. Glo

    Sometimes I wonder how people get and retain their positions in the medical field. I’ve been playing the please pass on my info for over a year. I fortunately had the option of changing my rheumatologists which I did because I could not, no matter how hard I tried, get them to release any of my medical info. They tell you they will but nothing happens. This is minor compared to your situation. I’m so sorry you have to go through this. Its not like you need worries. Thank you for info on the MCAD book. Will go to Amazon and check it out but probably not buy if its only been released in the UK. Shipping costs are ridiculous. Hope you hear that your medical info is where it should be and that things happen quickly henceforth.


  2. d

    Hi Jak

    I’m really sorry to hear about your dad. I hope he can get some supports as this problem progresses. Sorry also to hear about your challenges in navigating the health care system. I agree there are so many ways things can be streamlined for the better, although when people start mucking about in creating efficiencies, things usually end up for the worse. Probably because they never talk to anyone who actually has to do this on their own.

    I had to laugh at your post when you said how little time you had and yet you seem to have time to do all these amazing things like make your own information pamphlets! So glad your camera club was receptive.

    I have found two new to me food blogs you might like, when you have time to take a look ; ) Cookie+Kate.com and 101cookbooks.com. Both use whole foods in their recipes. Cookie+Kate is also vegetarian. The 101 cookbooks site has many great recipes for baking that I can do without needing to alter many, if any, ingredients. So nice! I just made the blueberry maple tea cake from Cookie+Kate. It looks and smells delicious, can’t wait to try it out.

    Hope you are feeling better and stop getting the runaround from the healthcare world.


    1. Jak Post author

      Thanks for the comment d and for the food blog info 🙂 The reason I have so little time is that I do stupid things like create my own pamphlets LOL! Oh well, at least waking at 5.45am most mornings but not being able to get out of bed til 7am while my body un-freezes itself gives me time to faff about on my laptop – silver linings and all that 😉 Jak x


  3. Zhaan

    Thanks for the heads up on Dr. Afrin’s book. I have conversed with him via email and have a lot of respect for him. I got the book and already finished it – really good read.


      1. Zhaan

        I don’t know if you’re at the part yet where he talks about EDS and Fibromyalgia but it’s like he’s talking about me. The whole book really resonated with me.

        Liked by 1 person


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