Sticky Blood-Hughes Syndrome Support
8,341 members8,517 posts

awful summer, autumn not looking good

Hi all, not been on for a while. Got back to work fully and without problems eventually, had last interview with HR and Matron this week.

Had work car parking permit revoked, so trying to fight it, lost 3 appeals.

Both parents diagnosed cancer in July, both treated, mum clear now, dad starting treatment next month as surgery didn't work.

Then mum tells me her cancer hereditary, so now been to Guy's London, to be told to have a colonoscopy.

Seen vascular team last week who say i have vascular insufficiency, to wear grade 2 stockings life long and need more tests ? surgery.

Physio for right side of body just keeps making another part of my body give up for a while.

My body is giving up by degree on me.

Will have to stop warfarin to have colonoscopy, feel really nerveous as feel awful when inr 3.5, let alone 1.5 that they want. Had said to stroke consultant that i work for that if i stroke due to low inr, would he treat me and take my care, he said no!! making me feel really low.He says i have too many conditions.

Take care all, rant lover, kids to feed and take out for their evening at skate park xx

4 Replies

Hi there, you have been in the wars to say the least.. I think your boss, would be wary of conflict of interests and confidentiality.. he was probably just being professional When things all lump together it can seem like one rather huge mass of awfulness, hopefully the procedure will be short, and you are one of the right hospitals for this with APS knowledge... AND they will used to doing this, and with people like you. Best wishes, please let us know how you get on..... the skate park bit sounds fun! Mary F x


Glad you are making progress although it can seem like 2 steps forward and 3 back at times!!

As far as the parking permit is concerned I assume you are going down the reasonable adjustments route? If not you should be. Do you have a blue badge? if you dont perhaps you should apply for one, once you have that your employer will not be able to refuse a disability parking space and if they did you would have a case for discrimination. just a thought......


I lost my job 3 years ago due to Aps/Lupus/Tia's. I started selling cards from home which helps keep my mind active and I can do as little or as much as I feel able.

I also joined a "Green Gym" which are like minded people who help out with various outdoor projects locally with the added bonus of meeting people and Excercise to keep as fit as we are capable of! Again, I only do what I feel able to and feel good about myself when I get home, tho exhausted and sleep well that night. Do you have a Green Gym in your area you can try?


Hi hon

Sorry to hear things so tough for you!

I do hope you can get back on top of things, get that permit back. Although that's minor to the battles you and your parents are fighting right now, my goodness it certainly all hits at once doesn't it! Sending lots of hugs to you all, thinking of you and hoping you all find the strength to keep fighting hon!!

I hope all the tests come back ok and the med teams get things sorted!

Here whenever you need to share, vent and rant away hon!

Take care gentle hugs love Sheena xxxx :-) :-) :-)


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