Is there anyone here who's had lupus for 10 or more years?
What's 1 piece of advice you could give to someone who's been newly diagnosed?
Thanks in advance.
Mechelle
After Retrospecting my life, I have had lupus since I was 17 years old. I know this because I would get rashes and become very fatigued after sun exposure! For many of years i was told it was sun poisoning, or I was having an allergic reaction to something. I was was even told it was some type of bug bites! I have a very complicated medical history with all the signs of lupus.
Just because you have negative bloodwork doesn’t mean you don’t have lupus. You know your body, so listen to it, if something is wrong push forward until you find the answer without driving yourself crazy! I am adamant about getting any type of skin rash biopsied by a dermatologist! It can save you many many years of hardship, mental fatigue, realtionship issues and other things! I had to demand a skin biopsy to be told I had lupus! Really! Who are the doctors! lol!
This disease has a mind of its own! That most people do not have the same symptoms! It is what it is, you dont get any do overs, no rewinds, so stop struggling and embrace it.
Education is the best tool for someone with Lupus! Yes it is a scary disease but the information learned should be used as a tool to help you manage the disease don’t use it as a fishing expedition to scare you. Dont get scared get mad and find out all that you can about what is happening inside of you! Education is power! The in words from the national foundation “I have lupus, lupus doesn’t have me” is a great mindset to have. Fight and never give up! As JC says, stay strong!
Strategically place people around you for the properly support and understand that you will need to go forward with the disease( hand pick them if you have to)! Remember it gets frustrating from time to time because others think that you look just fine! I look at that this as ignorance, not yours, theirs! If someone doesn’t want to be in your life because your life has now changed or because they dont understand your disease, then so be it, just let them go and remember you’re be the better person for it! It is that easy to relieve negative stress! Not!!!
Minimize the amount of sun and stress you experience or place on your body and mind everyday. Always look at things that happen in a positive aspect and not in the negative. You can always find positive in ever situation, you may have to look hard, but it is there!
Your life is about to change, sit down, fasten the seatbelt, and hold on tight.
Deenie
Hi Mechelle,
As you know i was born with it and never knew till 5yrs back but it's caused me so many testing ailments over the years and now Lupus is the main added bonus.
There's one piece of advice from myself and that's for members just diagnosed is....except it the best you can possible as it won't walk away from you but by mentally mastering it and what symptoms come with it...will do you alot more good than fighting against excepting the disease.
I've managed to do it in 5yrs and although it gets me down...it's never going to leave me and the quicker members can except the disease like other members have who have joined frightened by it, the better you'll be for crossing symptoms that come you way and dealing with them best possible.
(Always remember this...we're all fighters within)
Hugs & kisses to all. Terri xxx
I agree- don't let the disease control you- you control the disease! Although along the way you will have to make changes in lifestyle you can still live a long active and fulfilling life I have had this disease for 45 years and in spite of my illness have been able to remain active and accomplish many things.
"Nicely said poobie"
This main point you made is the main issue with excepting Lupus and dealing with it's symptoms.
"Able to remain active and accomplish many things"
poobie said:
I agree- don't let the disease control you- you control the disease! Although along the way you will have to make changes in lifestyle you can still live a long active and fulfilling life I have had this disease for 45 years and in spite of my illness have been able to remain active and accomplish many things.
Hi Mechelle,
Even though I was just diagnosed, I've had lupus a long time. Lupus is so different for each of us. I first recall losing a substantial amount of hair when I was about 13 or 14. It was so bad, my mom took me to an internist and he said I wasn't getting enough sleep. Have we heard that before or what? I agree with Terri, the best thing you can do is accept it. There's going to be changes, but I can chose to be stubborn and do it my way, or accept it and do it God's way. Life is alot easier for me when I get myself out of the way and let God take care of it. I got the best present in the world today - my daughter called crying and told me she loved me and she was so sorry for missing my father's funeral. One of her friends just lost their father in a car wreck, and my daughter has grown and is now thinking of others instead of herself first. She said she put me through a lot of stuff, and she was sorry. I'm going through a lot of stress in my job, but my family helps me through it.
Trisha
Hello Trisha,
That's all we can do with any situation we cross in life is get through it best we can, wheather it be knowledge, strength or both.
Oh bless your daughter mate for ringing and especially apologising to you but i so sorry to hear about your father Trisha.
All my best wishes are with you.
Love & hugs Terri xxx