Sweet Enough

The end of the honeymoon is fast approaching and it is time to move forward with grace and acceptance..."Each difficult moment has the potential to open my eyes and open my heart" ~ Myla Kabat-Zinn

Monday, November 27, 2006

I Think I Might Be Back.....

Life over the last few months has had me do many health zig zags that was sometimes scary but turned out all right in the end in some obscure way. I was going to start writing again when I got out of hospital a while back but I didn't feel I was contributing much. Now I am thinking well why can't I, just because I am not some great writer, that wasn't the point of starting it was a place for me to release the medical and health crap that has been going on in my life - so I am over time going to change the look of this blog - if I can work out html - and make it more of a medical journal of my life with the occasional happenings in my life.
Last time I wrote here I was experiencing severe headaches and just couldn't function and a week after leaving here I was rushed to Perth by plane as it was thought I had another occurrence of the blood clot, which led to spending 4 weeks in Royal Perth Hospital Neurology/Stroke Ward - thankfully I had a great room mate and we have become good friends and keep in contact even though there is a great distance.
This stay involved discovering that I had very high intercranial pressure from 2 lumber punctures and when releasing the fluid I had no headaches for 24 hours - pure bliss - but then there was talk of having a shunt put in which was all fine and good but you could not put it in my spine because of heavy scar tissue so they would have to go through my head and that was a scary time because they gave me all these scenarios of what they could do - each one more scarier than the last. In the end it was decided that they would drill a hole in my skull and place a probe in their and measure the intercranial pressure over 48 hours - I had to stay in the High dependency Ward for that because Intensive Care was full - this was when my Mum flew down to keep me company and to be their 'just in case'.
After that, it was decided that the intercranial pressure wasn't high enough to take the risk of putting in a shunt and because of my pain issues they got pain management involved especially as I have a pain condition (CRPS/RSD) which I have discussed before. When they came to see me it was discovered that it was actually the pain condition that was causing the intercranial pressure to rise and the headaches to occur because the condition had spread to my brain.
I was tranferred to the Rehabilition Hospital (Shenton Park - part of Royal Perth) as this is where the pain management Team worked from and I was admitted for 5 weeks of intensive therapy through a ketamine infusion and physiotherapy which involved being introduced to the mirror box and also a recognise program which helps you recognise what is left and right which over the years I have lost the ability to recognise the left side of my body because of the intense pain and mobility issues, etc. I have learnt to separate myself from it - it was time to get back in touch or I was facing a grim future.
So the big thing that happened while I was in hospital is that the 'honeymoon period" stopped and was whisked straight back onto insulin - I was devastated that is had suddenly happened over night. I was fine with it all for about 8 weeks (I was on 6 units of novarapid three times a day and 6 units of protophane at night), lets just say the last 4 weeks have been pure hell and I am now on 25 units of both novarapid and protophane and looks like going higher - I have had very high BSL's for the last 4 weeks - I am lucky if I can get it below 20 - mostly you can't even measure it and it is resulting in me having severe vomiting at the moment and jitteriness and flickers in my body and I am also suffering from falling asleep everywhere - I recently was nearly involved in a serious car accident - fell alseep behind the wheel - I fall asleep on the toilet (don't laugh I am serious) and quite a few times that involves fall off and having some nasty bumps to the head and other parts of my body. I fall asleep at work - at watch out if I have a pen in my hand with paper under it - I don't feel it coming on it just happens and I wake up a few seconds, minutes or the longest was an hour later.
So that about sums most of it up - what a funky life I am living at the moment. So thanks for the caring comments and I will hope to get back to commenting on other pages soon and meeting other people out there.
Take Care


  • At 10:18 pm, Blogger Kerri. said…


    I am so glad you've posted and I know you're still out there. But my God, what a journey you've had!

    I don't know what to say - it seems that you've been through so much - but I'm so glad to see that you're back and I'll be checking in on you often.

    If there is anything I can do, please let me know.

    -- Kerri.

  • At 8:38 am, Blogger Carolyn said…

    Thanks Kerri!

    At the moment I just have to concentrate on getting my BSL's back under control - I actually had my first normal reading last night in quite a while and this morning I wake up and it is unmeasurable so above 27.8 - sigh - this is getting real tough and extremely draining.

    I will be visitng you again real soon - I have a couple of times over the last couple of months but haven't felt up to commenting, but promuise to start soon.

    Take Care

  • At 11:52 am, Blogger Andrea said…

    Omg... it sounds like you've been through an awful lot- I'm so sorry that you had to endure some of those things. But, at the same time, those things do make us stronger people...

    Anyway, I was worried there that you may not be coming back, so when I saw this post, I was very excited :). I am far from a great writer,myself, but I do feel that sharing my posts with people in the OC (as well as others) does make me feel less alone with dealing with this disease. And also having that common bond is something that has helped tremendously. I wouldn't trade that bond with others for anything.

    So WB and please do stick around... :) Take care!

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