4 decades of lupus and doing ok

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New Member

Date Joined Jun 2013
Total Posts : 4
   Posted 6/14/2013 1:41 PM (GMT -6)   
Just found this forum. I thought I would join in and send some positive notes. I have had lupus and RA for nearly 40 years. I was in really bad shape at the start (back then they didn't know much about lupus) and have had some severe flares, many joint surgeries, some organ involvement (that was resolved with meds) and I am doing fairly well now, and lead a pretty normal life. I have found that the meds over the years seem to cause me more trouble than the disease (especially the prednisone which I have taken this entire time, but am finally SLOWLY weaning off with a new doctor). I guess my message is, with great support from family and friends, a very positive attitude and eating well (SO important to have a high nutrient dense food intake), one CAN live life with minimal pain and discomfort, and have a good life. I realize not everyone is the same and lupus affects people differently, but I have seen it all over these decades, and I know one MUST think positively and work to eat healthy and keep moving even through some pain. I do still have some bad days now and then, but with rest and doing things I am passionate about, and find things to laugh about, helps a LOT. We ARE allowed pity parties too, people just don't understand what we go through, often we don't look sick or we can't really put words to how we feel. But always remember, there is somebody worse off than you. Not to minimize what is going on with YOUR life and health, but it sometimes helps to put the situation into perspective. My mom (who passed away 4 months ago) used to tell me to remember this..."I used to cry because I had no shoes until I saw a man with no feet". This always makes me feel lucky to be alive and blessed to be able to go about my day with some normalcy. So you all hang in there. There CAN be life with lupus, and with the research and progress being made every day, we just might see a cure in our lifetime! Don't let lupus have power over you....you can strive to live the life you want. Listen to your body most of all. It often tells us more than a doctor can. Be wise, let the meds help you if they can, and think positive every minute. I do and after 40 years I know this helps. What we put out there comes back to us. I pray that all of you who are going through a rough time right now, just take it day to day. There is always tomorrow and it might bring you a better day. Hope for it and expect it.

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 6/14/2013 10:09 PM (GMT -6)   
Thank you! You put this into words perfectly. This is the mind set I strive for. Not always happening but worth trying for!
And my condolences on the loss of your mother.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 6/15/2013 12:03 AM (GMT -6)   
Welcome, Lise60.
I try to stay positive with my lupus. I'm 3 years into my diagnosis and considered to have moderate level (if that's possible?). I'm still learning to adjust to the changes in my body and do right by it.
I do get my pity parties at times, but I try to look on the bright side of things.
My psychologist tells me I've been able to turn things around when bad happens to me.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Jan 2013
Total Posts : 47
   Posted 6/17/2013 11:45 PM (GMT -6)   
Welcome Lise60!
Thank you for your words of wisdom and encouragement! Its nice to know that eventually you can live with lupus. I've only been diagnosed a year and a half and lupus has been kicking my butt. It seems I get over one thing and it presents in another area of my body. I just can't feel better it seems. Been down quite a bit lately and have made some dramatic changes in my meds, hoping to get me where I can live again. Its gotta get better some day :)
Thanks again!!
Nicole- 25, married, no children, Registered Nurse
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Nucynta prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~
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