It has literally been less than a week for me since my body went haywire. Doctors suspect Lupus based on initial blood work, but more work needs to be done. Of course, my mind is racing. I’m a single mom and a full time teacher. What reasonable changes can I expect to happen if Lupus is my diagnosis? What will my life be like?
Everyone's lupus is different. Everyone responds to medications differently. I've had this for a very long time, my best advice is don't stress out, ask questions of your doctor, get plenty of rest and take care of yourself. None of us here can even predict how your lupus will or will not progress, but know that you are not alone, this website has tons of information and support for you to reach out.
What is your life like? Are you able to work? How severe/frequent are your flare ups? I literally have no frame of reference. Thanks.
Teresa,
I know you are facing something that is very scary right now but stress can make it worse. The best thing you can do for yourself is not worry about what it might do, because none of us knows what course our lupus will take. Lupus is all about learning to take great care of our bodies through healthy eating, exercise, rest and building a solid relationship with your doc. Also learning to live in the moment and not fear the future. Even a doctor would not be able to predict if you will be able to work or how severe your lupus will be. I know it's a scary thing to face but know we are here with you to help you through your lupus journey. Please keep us informed of your results. Hugs.
"What reasonable changes can I expect to happen if Lupus is my diagnosis?"
This question is a very good one, but has one flaw in it. The word "reasonable" is not a word I would ever apply to Lupus. You know the idea of the only unchangeable thing is that everything will change? That is Lupus. It seems like the only thing about Lupus that you can rely on is that it will be unpredictable. Everything else about Lupus is up in the air... possible but never certain. Personally, I find this aspect of the disease the scariest. I am a person who likes to know what is coming, so I can prepare for it physically, mentally, and emotionally. To find out I can't really prepare is maddening.
However, as reddog said, the way to combat that is to learn to live in the present, in this moment here and now. It can be a hard transition to make, but you do learn to take each blessing and happy thing and hold it close, and endure the negative ones until they pass. For some of us Lupies, we've been able to keep working and living actively. For others of us, we have had to step back and learn to live more moderately. Others have had to cope with long periods of bed rest or hospital stays. It truly is different for everyone. ::hugs:: I'm very sorry you've had to come nose to nose with this in such a shocking manner. That only makes it more scary. But we are here with you, walking the same unpredictable paths. You are not alone. Hang in there hon.
Like everyone said, no lupus is the same for everyone. Speaking for myself, my lupus and RA is relatively mild. I am able to function fairly normally from day to day. I manage to take a water aerobics class 3-5 days a week, I can get my kids to school, cook clean, do the laundry etc. Some days are better than others. Some days I need to rest a couple hours when we get home from school before I can throw myself into homework and dinner and bedtime routines.
When I get a flare ( mine are few and far between) they knock me for six. I feel like I have the worst flu and every joint in my body is going to explode. I get fever, chills, fatigue. It normally lasts 2-4weeks for the initial phase, then I slowly begin to return to ‘normal’ . I have noticed that for me, after each flare, I have a new normal. I never really quite get back to what I was before… You do what you have to do, dust yourself off and carry on!
You have this! You can deal with it. This site is great! Good luck to you! Hugs x
its like others already mentioned, no individual is same as the other lupus patient. what i have learned from my experience is you need to understand you 'New' limits. yes we were very active before this awful disease hit us, but that doesnt means life ends here. all you need is a plan. allow me to share few things that helped me big time, and now i am able to function a bit.
1. realise your limits. dont feel sorry or depressed for what you can not do, rather be proud of what you are achieving. for me doing my laundry is a big achievement.
2. stay away from stress as much as you can. stress do take a major toll.
3. exercise regularly. even if it means walking for 5 minute. dont break the cycle. it helped me a lot for sure.
4. do not exert yourself physically. learn to say no. those who understand you wont take offence. and those who dont .. well thwy really dont matter.. do they?
5.sleep a lot. never compromise on your sleep.
6. talk to your family or someone close. if not just talk here. it is very importent to share how you feel and seek support. we all are here to help each other.
7. feel no shame in asking for help when you need it. listen to your body. if it says i am tired i need sleep. give it what it wants.
these were the changes i made and ifeel much better. hope you get better soon. warm hugs.