[Kyphi]

Hi there, its been week or two since I visited thought Id get my'support fix'. Since I last posted Ive had my first Rheumatologist appointment. It went well, I am confident in him so its a start. He put me on plaquanil (my GP had started me on prednisolone). He started to titrate the pred so Im now on 20 and joints now inlammed again and begining to feel that yukky lupus feeling againhno:. On Friday my left leg began to hurt - I was worried it was a DVT and I was right! Im now on Heparin and start warfarin tomorrow.
I feel like im not me anymore! Im not sure who I am? Does that make any sense? In the space of 4 months I gone from a professional working mum to a total pill popping whingeing, weak, bad tempered horrid person!:sad:
So I came back here - my one place of solace.

I have also become a member of Lupus UK and recieved all the bumff yesterday and that depressed me. I think more people should write in with 'happy' stories - good things happening to people with lupus - there must be some!!!.

Thanks for listening - again - jst knowing your all out there really helps.

By the way my name is Kay. x

 

[sam101360]

Mrssad:

Hi, I am glad your rhumy appointment went well. I also amd sorry that you feel so poorly, but I just want you to know, that it can be better! Plaquenil will take some time to kick in so you do need to patient with it, however if you don't adjust to the lower dose of pred in a couple of days, call the rhumy back...maybe he can give you something to help ease things for a bit.

As for not being the old you, I am sorry, you may never be that person again, however, you will be a new you! There is no reason that the new you can't be strong and independent, but smart enough to listen to your body!

Lupus doesn't define who we are, it just alters the direction we take in out life.

Stephanie

 

[Kyphi]

Wow thank Stephanie, I knew Id get a kind listening ear. Good advice too. I hope the Floridan weather is suiting you (visited Anna Maria Island many times - a favorite).
Thanks again

K

 

[sam101360]

K:

Your welcome, wish I could have offered better advice! Florida weather can be tough, as the sun does occasionally trigger my lupus, try living in the sunshine state...LOL

Stay upbeat if you can...there are brighter days!

Stephanie

 

[Katharine]

Hello there,

Sorry to hear about the DVT but good that you recognised what was going on quickly.

I think we can all identify with that awful "what has lupus done to me?" feeling. There are days that that will be an overpowering feeling but thankfully, as Stephanie has said, there are other days when we can see things differently and see how much we have achieved despite our disease.

There are positive stories and I think that you'll find some here on the St Thomas's trust website http://www.lupus.org.uk/whatislupus/whatislupus.htm as well as some in our "personal stories" section which is still quite new so hopefully we will have far more in the future.

hugs :hug:
Katharine

 

[Kyphi]

Thank you to you both. Yet again a helping had finds me across the ether! I just wish I could give something back - I just seem to be taking and taking at the moment. Thanks for the web link, just couldnt find anything.
Kx