art1st's Journal

Well after 15 months of "going it alone" I finally found the time and sense to join the forum and share my thoughts and views ...even though they may not always be required or wanted!

I've been trying desparately to make things work with my wife but she's so stubborn (although I'm not too sure I should find fault in someone who decieded to stick around and infact we're both stubborn). The only problem is she doesn't support me or want to talk about things so I guess I'll just have to make do with my new e-freinds.

January 08 I was diagnosed with KS one day and AIDS the very next. That's when my world fell apart and I thought my time on this earth was all but done. Well I cried for a while and then I spent hours googling my new found sentence. Hell I was really scared then because most of the stuff I was reading was so out of date with the medication available today.

Two weeks later I started on Atripla and I worried so much about how it was going to affect me but to my surprise there were very little side effects (if any) and now I've settled for my daily dose at 4am ....yes you read correctly, 4am(ish). My alarm goes off, I hit it, lift me head from the pillow, swallow ...and back to sleep (hhmmm most times anyhow). It works for me and fits well with my lifestyle. Infact doing it this way leaves me free to enjoy those evenings out with my wife or family and not having to worry about the last supper ...so to speak.

Hell I'm rambling on ....where was I?

Ah yes and then there were the CT scan to see if the KS had gone internal. Thank God I was ok and only the skin lesions (cutaneous KS) were the issue. Well the meds sorted most of that and my lesions are all but gone today as my CD4 is still on the up. I don't mean to make light of the situation, cancer is still cancer and sarcoma usually being the worst, I thought my days were numbered.

...but here I am, the radiopherapy has been and gone, and for my sins I'm left with a bit of edema in the foot which makes wearing socks a real pain in the ass but like all things I've learnt to work around that and often forget I have an issue at all.

That's only a brief outline and I'm sure I missed a lot of the lows ...yes I did. I remember crying myself to sleep so many times and wishing there was someone there to hold me and tell me it was going to be fine ...."it's just a matter of time". Sorry I got tearful writing that.

So, now for the rest of my life and moving on with our friend the virus.

Can I just say a quiet THANK YOU to those individuals who worked tirelessly to develop the drugs we have today and to all those healthcare workers, clinicians, support workers and specialists who choose to give their time so that I can be around one day to see my little boy reach adulthood. YOU ARE ALL WONDERFUL PEOPLE!

I'll close off for now but if anyone needs any help or reassurance with the KS side of things then please feel free to PM me