I am now Blogging our experience

As I posted earlier, Derek had a major CAPS event in October last year. He now has Addison's along with APS

We have found people outside the Addison's world and APS world don't "get" it. We are lucky we have a great Dr who understands what he is going through.

So I have started blogging about what it is like to live with an Addisonian, with APS and getting input from him on what it is like day to day.

He now has TWO rare conditions with symptoms that cross over. It's very hard to tell which is which.

If anyone is interested (and I won't be offended if you are not) then it is livingwithaddisons.wordpres... . I have only just started so it doesn't have a lot of info yet.

I have called it living with Addison's as that is the dominant condition even though it occurred because he had APS and had surgery.

Jo

9 Replies

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  • Hi Tiggercat,

    I have just tried to access Livingwithaddisons.wordpres... and it says on my computer that This Webpage is not availalbe.

  • Sorry, it was missing the .com at the end. I have now corrected it so you should be able to click the link.

  • Hi there, good luck with your continuing blogging: I found this paper for your: pmj.bmj.com/content/67/786/... and also this one: ard.bmj.com/content/48/5/35...

    Mary F x

  • Thanks Mary, I have put links on my blog as well.

    Hopefully people that don't already know about these conditions will learn something.

  • Thats brilliant! Well done you xx

  • Wow, I have belonged to another forum (for prostate cancer) for almost a year and several of the women there have admitted that until my Husband got PCa, they had no idea that either of the other conditions existed so they are keen to learn about both Addison's and APS/CAPS. I guess it is working already.

  • Thank you for blogging, my maternal grandmother had Addisons so it's good to read up further.

  • I have put up two posts on my Blog at livingwithaddisons.wordpres... called A Catastrophic Event - Part 1 and Part 2. This is the start of my husbands journey through Catastrophic Antiphospholipid, from a diagnosis of cancer, to Surgery (the trigger), to illness, and diagnosis.

    I am putting this up so others can see what symptoms he had and how things unfolded for us. Hopefully it will be useful for others going through surgery to see what to look out for. People won't have the exact signs and symptoms that Derek had, but it will give an idea of what could be wrong. Hopefully people will find it of use.

    Jo

  • Thank you! :-)

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