Living With Lupus Your Q&A

[Adminஐﻬ]

1) Tell us about your Lupus, Fibro or Autoimmune Disorder (MCTD) you have

2) How do you manage life with pain?

3) What are some challenges you have faced with your illness?

4) Who helps you through tough times?

5) If you work outside the home, what obstacles do you face?

6) Outside of work, what role does your illness play in your life?

[Crabbyla279]

1) Tell us about your Lupus, Fibro or Autoimmune Disorder (MCTD) you have
      Officially dx'd with MCTD but the key players are: Lupus, RA, & Scleroderma.  Also have been dx'd with Fibro, and Autoimmune Hepatitis.
2) How do you manage life with pain?
     I take each day as it comes, arranging my morning routine to allow for 15 minutes of "stretching" before crawling out of bed, other than that tylenol is my best friend!
3) What are some challenges you have faced with your illness?
     Learning in the last 3 years that I really can't be outside like I'd like to be.  I am still very much in denial about that but my body reminds me weekly if I've done too much outside time.
4) Who helps you through tough times?
     My mom (when she's not bullying me about work) and my friends.
5) If you work outside the home, what obstacles do you face?
     Getting people to believe that I can't be in the direct sun "all the time" a little bit is okay, but when I say I need shade... they need to take it as fact and not give me grief!
6) Outside of work, what role does your illness play in your life?
     These illnesses have taught me to slow down a little bit... and to cherish each new day as a gift.  I've also been able to prove to others that just because I'm "sick" I can still have a "normal" life.  I just have to make it my normal, not theirs, lol.
luvs ya bunches
The Butterfly Goddess

[3sisters]

 

1.) My official diagnosis is   nurse_MCTD   (Lupus, RA, and polymyositis) 

2.)Pain Management: RX NSAID, and immunosuppressive drugs and  my heating pad for achy joints  and muscles! Also, my memory foam mattress topper has improved my quality of    sleep and has decreased night time pain. I also use sauna and hot tub as part of therapy, and relaxation.I hot tub and stretch before and after swimming. Long gone are the days of power walking and gymnastics!
 Water exercise (2-4 times a week); I do slow range of motion exercise to keep my joints from locking up, and to keep what muscle mass I have left in shape.
I take several "rest breaks" through out the day, even when I feel "well"
I still take these breaks daily.

3.) Challenges that I have faced living with this illness:
To give up the old idea of playing "catch-up" on my good days. Discovering that I am not omnipotent, that I'm a human being living with a chronic illness. That I can still have a meaningful life inspite of my illness.Managing my energy reserves  and having quality of life is important to me. Accepting that nobody will take a flare for me!   Having a sense of humor when I feel like crap, despite feeling like crap.
BIG ONE: saying "NO".
Mothering  during flares, the guilt of not being totally available to my daughter during these times. Trying not to bbq myself during flares is still very challenging All of the above are my challenges....

4.) Who helps me:
My Mum! My daughter! My sister! My Dad! They all have wonderful senses of humor, and are so helpful in many ways. (Last Xmas my sister set up all of my Xmas decorations because I was in a flare and couldn't walk! ) My best friend and THIS site. Oh, my doctors too!

5.) Working outside the home:
I've run a small cleaning business since 1991, and when I got sick it was so hard to find workers that were dependable.  This is better now, because I have two great helpers! My clientelle are wonderful people and very supportive!

6.) The role that my illness plays in my life:
It is my barometer of any and all actions that I will take for any given day. It is also teaching me a greater meaning, at depth, of compassion toward those about me.      Love, Kim   

[sunnipearl]

1) Tell us about your Lupus, Fibro or Autoimmune Disorder (MCTD) you have I have Lupus SLE. and Fibro...

2) How do you manage life with pain? I have pain med's when it get's real bad!

3) What are some challenges you have faced with your illness? Not being able to be the person I was before this disease,no sun,no walking far,People not understanding what this illness is? and thinking other things about it. I have heard them all you are lazy its depression your not sick you don't look sick on and on!

4) Who helps you through tough times? My mother and my hubby......But for the most part I am on my own...

5) If you work outside the home, what obstacles do you face? I used to work outside of my home but my disease got the best of me and was down for the kill..........Not  funny!

6) Outside of work, what role does your illness play in your life? Well My kids are affected by my illness,They hate to see me down and out. They want to help me all the time,they are hurt by my illness.....They don't want to believe I have this and most of the time my son will not talk about it...He just tries to help the best he can...Also I am not able to be the grammy I want to be like playing outside with my grand daughter at the park and so forth..Its been a long road! But I am alive and Thank full to God..I am learning things every day. Blessings all. Love Gail

[Adminஐﻬ]

1) Tell us about your Lupus, Fibro or Autoimmune Disorder (MCTD) you have

2) How do you manage life with pain?

3) What are some challenges you have faced with your illness?

4) Who helps you through tough times?

5) If you work outside the home, what obstacles do you face?

6) Outside of work, what role does your illness play in your life?

Bumping up this thread in hopes others will post