Sticky Blood-Hughes Syndrome Support
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Not the whole truth because I've forgotten most of it!

Okay this is me today, 46, fat, I may have already done one of these and forgotten that I've done it. I have APS, I also have a whole raft of other things that get in the way of my APS when it comes to diagnosis or chosing a doctor, at one point I was seen by a different consultant on each day of the week. I can't tell you very much about my childhood, teenage years, twenties or thirties as I don't remember them. I do remember bits if triggered by an event but it does mean that I can enjoy Freeview and endless repeats and still not know whodunnit or how the film ends!

I was diagnosed in 2004 after 9 failed pregnancies (first failed one in 1984, 1 successful 1 in 1994) as having obstetric APS although it was felt that I probably had APS given the clinical features when I wasn't pregnant (migraine, tinnitus, reynards, vertigo,ulcers, etc). After 1 more pregnacy loss using heparin therapy I had my 2nd child (using heparin) in 2006.

I had her by c/section which was a very long process (30 mins of trying to get her out using forceps) and I had a nasty allergic reaction to the dressings they used on my wounds. Basically from then to now I have not been well. I have good days when I can find my way through the fuzzy head and appear to others less like a stoned hippy than normal but most of the time I am not unlike a very bloated version of Dylan the rabbit from the magic roundabout, or a sheep who stands in the field gazing vacantly about just contentedly chewing, add to that the fact that I generally knit a lot and own a wool shop - that is why I am known as Sharon the Sheep.

I have read a number of the entries on this forum and my heart goes out to you all. Thankfully I have not had anything seriously life threatening going on, you must be very proud of yourselves for bravely dealing with various clots and the like and then coming on to this forum to support others. I recognise so many of the symptoms, especially the fuzzy brain and memory problems.

My head has decided to go slow. I can still function and I do still work 2 days a week (but not together as I get too tired) in a Jobcentre where I am given longer to do interviews and have lower targets to meet and extra rest breaks. And I run my shop with the help of great staff (who all have their own health problems-it's therapy central in my wool shop). But what I do is in slow motion. I get in a tangle with my words but never the written word (apparantly thats a different area of the brain). I can't get my eyes to focus clearly now and am troubled by double vision alot. I'm taking Plaquenil and Prasugrel (allergic to aspirin) and have felt an improvement in joints and ulcers and migraines since starting the prasugrel. OMG I nearly forgot the migraines!

Before I started the Prasugrel I was getting a migraines every 10 days lasting for 3-4 days of pain but the preceeding aura was for 7 days so I was in a continuous migraine state. In the aura phase I was nauseaous, had heightened sense of smell and hearing (no fun in a jobcentre I can tell you), acute sensitivity to light, hallucinagenic dreams, visual disturbances, partial one side paralysis and temper tantrums. Then I would vomit profusely, the pain would strike and I'd go to bed for 3-4 days. After several months it was getting a bit depressing. After a year I was on disciplinary warnings at work for poor attendance and had tried a number of drugs including Topiramate (an antiepileptic to alter brainsignals). Dr Davies at the Louise Coote didn't think anticoagulation appropriate because I'd only had borderline positive test and never had a clot. It was only when I saw a Neurologist about the migraines he decided the only thing to try next was the anticoagulation that he put me on the Prasugrel and I've been on it 6 weeks and no migraines (touch wood).

A recent MRI shows that I have a number of scars in my brain now that are suggest of vasculitis or TIAs so when I have my next Lupus appointment in October I hope to review my anticoagulation so that I can avoid any further damage being done.

I have Ehlers Danlos syndrome (ooh I love a syndrome), this means I'm very bendy or stretchy depending on your perspective I guess. I can dislocate quite easily and have worn out my joints and bone ends rather prematurely so I have widespread arthritis. It goes hand in had with the lupus symptoms as it means that all my tendons and ligaments are too stretchy and get over used and inflamed easily so I have lots of itis everywhere from tendonitis to bursitis. It affects internals too so I have a bowel prolapse - this is when you find out how much you husband really loves you! due to the arthritic and inflamed shoulder joints (going in next week for treatment) I can't wash all my body or toilet myself - hope you are with me. So he gets the pleasure of washing me in the shower, and to cool him down afterwards he has to manually support my pelvic floor so I can use the loo! Bet he didn't have that in mind when he said "in sickness and in health". But we always cracking (no pun intended) stupid jokes and end up in a heap crying with laughter. Cos one thing APS can't take away is my sense of fun or my love of life. I have 2 amazing children. Because of my APS I work away from home 2 days a week and 5 days a spend with my kids. Because of my APS I am doing more craft work and teaching others how to knit. Because of my APS I have time to take time. Because of my APS I have learned patience. Because of my APS I have become a more tolerant person. Because of my APS I have become a less selfish person...I would love to have learned these lessons without APS but that isn't a choice I was given.

So onwards and upwards.


Sharon x

5 Replies

Hi Sharon, wow that was really written from the heart ;-) despite all you describe it was heart warming to read you certainly are a strong determined person who obviously has a loving family... i take my hat of to you hun you sound a lovely person and i so wish i could work in your wool shop take care love kathy xxx


Hi Sharon, and wow again hon, what a post, I think very brave and another real fighter in our midst. Glad you found us. Look forward to getting to know you, Take care, gentle hugs, love Jessielou xxxxxxxxxxx


Hi Sharon you are just as brave as the rest of us struggling through this illness and as the above two entries have said i congratulate you on being a strong minded individual and i know you will find what your looking for and we always here to help.


Hi Sharon....that was some post!

I had to read it twice just to take it in! APS is great for not letting you read things & keep it in the mind for at least 5 mins!! :)

Yep you do tollerate things more & right again that it WILL NOT take away our sense of humour! my hubby says if anything I'm worse now! as I'm even more sarcastic than ever ! I have a wicked/wierd sense of humour,

For example of fav' actors/comedians : Jim Carrey, Eddie Murphy, Tim Minchin plus I love the Monty Python films, especially : The Holly Grail!! ........'my names Brian & so's my wife!' & 'he's been a very naughty boy!'

Keep the smiling going hun, it's good for us.

Sue xx


Hi Sharon

My heart goes out to you, with everything that you have and are dealing with. Much of which I and most others can sympathise with and also smile and laugh with you over. I laughed out loud when I read your comments about films and TV programmes, I find exactly the same, its great isnt it, everything is always new and interesting :-) For the most part my family smile sweetly through gritted teeth when i watch a film for the tenth time, and i know when i have gone one viewing too far as one or other of them will give me a blow by blow account of what happens, just so they dont have to sit through it again!

Like you I have the most wonderful and supportive husband, who never loses patience with me, has never baulked at helping me with the more awkward moments, and we can still laugh through it all.

Keep hold of your great sense of humour and I look forward to reading more of your blogs.

Love Suzie x


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