Another long awaited post: I'm getting really bad... - LUPUS UK

LUPUS UK

31,695 members28,073 posts

Another long awaited post

abby1649 profile image
5 Replies

I'm getting really bad at this posting. It's been 10 months. I am on a site in the USA called MyLupusTeam. Terminology is more familiar than the UK as I live in Canada. I am stable and in remission (if that is a thing) from this awful disease. I live each day to the fullest doing what I want, what I enjoy within my limits.

It's been a 4 year journey for me. My Rheumy calls me his poster child for how this treatment is supposed to work. Most days I feel almost normal. No stress and a positive attitude have been the keys to my recovery.

Still have "down" days which I call them. Stiff and sore and usually tired. I can usually push through them as I know tomorrow will be better. My father passed away 4 days ago. Its been a blessing as he has been ill for 4 years. He's now with my mom who passed away last Christmas. I feel all is right in my world now.

Gentle hugs and blessings to all. I hope you are doing as well as I am.

Written by
abby1649 profile image
abby1649
To view profiles and participate in discussions please or .
5 Replies
whisperit profile image
whisperit

Hello Abby1649,

Good to hear from you, especially that you are doing well. Do you think there are any things that you've been able to do that others could learn from, in terms of the management of your condition? Or perhaps it is just luck?

I'm sorry for your loss, but glad you feel it is for the best. Do keep in touch x

abby1649 profile image
abby1649 in reply to whisperit

You know sometimes I think its just luck. My initial Rheumy suspected a DVT and suggested they check for Lupus. I was referred to the UofA Hospital (Great place) The staff Rheumy was fascinated by my case. Diagnosis confirmed in 4 days. I don't remember the tests done as that whole two months is blurry or just gone. 6 months of chemo followed by the tried and true meds did the trick. I've never looked back. I listen to my body. Rest when its tired, warm it up when its cold (which happens a lot) and eat & drink whatever I want. I do have a monthly massage. Started off weekly and so effective I have not taken anything for pain for three years. See my Rheumy next week. Will post the results but am assuming they are good.

llewelyn2405 profile image
llewelyn2405

Sending you a vertual hug ⭐️

MVJohn62 profile image
MVJohn62

Thanks for the success story of positive attitude, long way to go, 17th year with daily medication, still I am strong at the age of 55.

leslieliesel profile image
leslieliesel

I live in the US..I will look up the US Lupus group you mentioned....

You may also like...

Another post on diagnosis

to figure out what’s wrong with me myself. I’ve been under investigation for Lupus, had a blood...

Hi, Apologies for the long post that follows, but I really need advice and support at the moment...

injections per day of Clexane just to keep my INR up. I have to have an INR of 3 - 4. I have been...

Awaiting diagnosis

Awaiting diagnosis

I am new to this site and joined as I have been informed I might have lupus and still undergoing...

Awaiting Rheumatology appointment

joint pain & feeling hot all the time. I've never been a hot person, always very cold until now....