THANK YOU ALL !!!!!: I just wanted to... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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THANK YOU ALL !!!!!

14 Replies

I just wanted to thank all of you amazing, brave people who have given me a new lease on life. My INR is being raised and my Warfarin dose has been doubled to 15mg daily. I am so optimistic as I am already feeling better - my head aches are amazingly better - still get the odd one but not nearly as intense and definitely not all the time. I cannot remember when last I woke up without a head ache!

In a way I do feel a little angry because something as simple as raising my INR could have changed my whole life. If my Doctor had just done a little research he would have discovered it years ago. My illness cost me my marriage - I met my husband when I was 15 and we married 5 yrs later and were married for 25 years. Unfortunately my inability to keep up with him lead to us leading increasingly separate lives- he is a marathon runner, very social and a real get up and go person. He just could't cope with a continuously sick wife and through his running club met some one else who could.

This has been devastating as you can imagine as I am now alone to deal with my health issues. I have 2 wonderful daughters who are very good to me but neither of them live in the same city as me.

I have almost given up on life as I see nothing positive to look forward to. Now at least I may be able to live without constant pain, thanks to all of you wonderful people, I am just so sad it came so late.

Thank you all so very much for all your wonderful support and advise.

Keep strong and fighting the good fight.

Pene

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14 Replies
MaryF profile image
MaryFAdministrator

Thank you for your generous and much appreciated feedback. I am glad you are now seeing the results, of your hard work in pushing to improve your own situation. Keep in touch, Mary F x

in reply to MaryF

Thank you Mary

X

MJLS profile image
MJLS

Stay strong, don't give up. You may be without support physically but were all here to listen and talk. X

in reply to MJLS

Thank you so much

Stay well

lots of love

Thank you so much for the encouragement and support - I do so appreciate it all.

Keep well

Lots of love

Jane-Martin profile image
Jane-Martin

Hi Pene, I left an message on your other blog, but want to make sure you get it, so will repeat it here. Give me a ring anytime you want. I am closing the foundation as I sadly cannot afford to keep i going, so the web page will go along with my contact details. So, just keep those I gave you nearby and call anytime you want. I am here if you wanna chat or get support anytime. Jane xx

in reply to Jane-Martin

Thanks so much Jane, I so appreciate your help. I'm sorry you are closing the foundation but am so grateful that you opened it all, it has really helped me :)

I will keep in touch thank you.

Lots of love

PS Thanks for repeating your reply here - I have no idea how to find 'my'other blog - didn't know I had one :) !!!!

tassie profile image
tassie

That's great Pene ...so glad to hear you are getting some relief at last!

Constant pain can drag you down but hopefully now there is light ahead.

in reply to tassie

Thank you - I'm sure there is light now :)

Manofmendip profile image
Manofmendip

Hi Pene

This is wonderful news.

Best wishes.

Dave xx

in reply to Manofmendip

Thanks Dave!

Zezes-nan profile image
Zezes-nan

Hi Pene

Glad that you are feeling better

best wishes

jackie

in reply to Zezes-nan

Thank you so much Jackie!

Love

Pene

Susiec profile image
Susiec

I am so happy for you. I am thinking about asking my rhuemy to up my warfarin. I have had a headache for three months along with a few migraines and I don't much appreciate it... I can't imagine what you have been through so sorry for all of those pains... So glad things are looking up. Best wishes love ya Susan

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