Your Life with Lupus

A lot has been thrown at you.  You hear all kinds of terms thrown around. You may still be in shock. Your life has taken a drastic turn. Your doctor just told you that you have an autoimmune disease.

You have lupus.

What do you do now?

There are important things you can do… right now!!

 

Whenever something unexpected comes up in my life, I like to have a plan of action. There are a ton of resources on the web, but I would like to tell you what helped ME.

  1. Find a second opinion. Even if just to ease your mind.
  2. Find a doctor you feel you can trust, and who knows what they are talking about. This is your health that is on the line, and you need to be able to work with your team of doctors to get the best help you can.
  3. Educate yourself. Talk with your doctors first, and don’t be afraid to ask questions. Read respected resources on the internet. Find books at your library and online.
  4. Talk with your loved ones and ask for their support. Keep them updated and let them know how they can support you. Don’t be afraid to ask for help, or accept help that is offered. Share The Spoon Theory with them.
  5. Allow yourself to feel the different emotions you may feel… Anger, sadness, relief that you finally have a diagnosis. Your life may change in a lot of ways. Work through your feelings and try to learn to live with the person you are now.
  6. Prioritize your time and energy. Figure out what is important to do, and let the rest of it go if you’re tired. Don’t be afraid to say no!
  7. Find out what triggers your flares, and do your best to avoid those triggers.
  8. Get plenty of rest and eat properly. Your body needs fuel to create energy and to heal. Eat real food and aim for getting nutrients! Get rid of the junk!
  9. Keep moving. Mild to moderate exercise is best. Even if you only have the energy for a 5 minute walk, do what you can.
  10. De-stress as much as you can. Meditation, yoga, massages, relaxing baths, time with your family and friends… whatever helps to make you happy and lower your stress is great.
  11. Remember to be thankful and grateful for the life you do have. Don’t forget to give back. Giving can help to give your life purpose and meaning. It can help to make the bad times not as bad, and definitely give you more good in return.
  12. And last, but not least: stay positive. Having a negative mindset, and letting yourself get stressed out will just tax your body more. Stay positive and keep hope for your future. There is research being done about lupus. New treatments and breakthroughs are being made. You will find support and love. I promise there is hope for me and for you.

If you ever have any questions, feel free to send me an email! I am open and willing to answer anything I can help with, or together we can find the answers.

Your friend through this journey,
Erin

 

What do you wish someone had told you when you were first diagnosed with lupus?

What insight have you gained along the way?

11 responses to “Your Life with Lupus

  1. What has been your experience been like with Lupus so far? What kind of treatments have you had? thank you for writing this blog, it has helped me to know I am not totally alone.
    Thank you,
    Barbara

  2. My wife has lupus, and I am going to recommend your page to her.

  3. I was just diagnosed and this really helped. Thank you for sharing this info.

  4. I wish someone would have told me how to deal with my feelings after my diagnosis, it was the toughest part.
    I have learned that you can’t do everything. Before my symptoms started I was such a go-getter, and now I have learned I have to slow down.

  5. This is an excellent read for lupus newbies. Thank you for writing this!

  6. Good post, thank you for sharing.

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