Sticky Blood-Hughes Syndrome Support
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Hello my wonderful friends,

Well I'm off to see my dermy this afternoon and it's really thanks to him that I'm where I am today. He ordered all the bloods because he thought my 'rash' could be I'm sitting here looking at the sunshine, ruminating over the past couple of months 😐 and I feel like I've climbed a mountain! I seem to have more questions but feel more positive at what and why I need to ask them. That being said - I'm not sure whether 2 positive anticardiolipin antibody tests means HS and I did ask my rheumy at my last appt but he didn't seem overly concerned but I am. Time is not my best friend at the minute as I've been so busy with B's mom being in hospital, up and down the M6, eating late, playing the 'I'm ok' game, back and forth to I have time and I'm going over my first rheumy appt ( awful) unsupportive GP (told to go away, it's in your head) and I'm feeling all over the place! I should be so happy that I'm seeing a fantastic Dr at the LLC but I just feel flat 😑 I suppose I'm worried that I'm about to go into a 'flare' because it's where I've been superstressed, that's when it gets me. Sorry I'm so down, it's really not like me 🙁

Thank you for listening 😚

Charlie xx

6 Replies

So sorry you are feeling like this, it's quite normal you know! Sometimes after the excitement of actually getting answers to things that may have been going on for a long time, the realisation of what it all means and the enormousness of it starts to sink in. Things will settle down. I think you just need a big hug ((((())))))


Aaw bless you - I'm sure I'll be OK, it is such a lot to take in and I don't really think I've had the time to take it all in until now!

Thank you - the hug was definitely appreciated 😚

C xx


Big hug from me too....

Agree with what Apsnotfab says - also we seem to have characteristics of over doing it then hitting the ground running (Sound familiar?) - I've still not learnt yet!!

Give yourself some 'me' time xx

1 like

Thanks my darling and great to have you on here 👍👍

Charlie 😙


I'm only 6 months diagnosed and some days my head is still swimming. The world stops spinning... and we fall off for a second or two and it's a nightmare to climb back on. The gravity is nearly impossible to surmount. Still we are ( if we choose to be or if we are lucky enough) mom, wife, lover, business partner, emotional partner, sister, sister in law, daughter in law, and for some if applicable, who still work- professional. But sometimes the first on the list ( at times) has to be patient. A very ill one at times.

It's a LOT to wrap around very quickly. APSnotFab and Holly are very right. It's good for me to hear this , I've not heard it ever said this way.

Thanks, ladies! And Charlie Bear- most days do not feel this overwhelming, don't worry! But good to know when they do, it's pretty normal and ok- and you're right. You may be overly tired- so watch out- heads up.

What sweet administrators we have. They go along to most dr. Appointments I have. ❤️


You're right - it's those times when you feel like everyone and everything is against you that we have to remember it's OK to be scared, in fact pretty healthy to be! That's when you have to pick yourself up, dust yourself off and move forward. It's much easier to do with friends and wonderful administrators so thank you!

Charlie ❤


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