I plan to talk more about my health on this blog and discuss how I am living with Lupus while enjoying life. Then I realized that some of you don’t even know what Lupus is. Whoops! Sorry about that.
This post is my effort to give you a quick and simple understanding of my Lupus and how it affects me. Note, Lupus itself is not even close to being simple and varies so much from one individual to another that it is important to always keep an open mind when listening to a Lupus sufferer talk about their pain.
Facts about Lupus:
- Lupus is a chronic autoimmune disease
- Lupus makes the immune system use our own antibodies against us, as if we are a walking flu in need of a cure
- Over 1.5M Americans are affected by Lupus
- Lupus symptoms mimic other diseases (remember how every “House” episode diagnosis started off with Lupus?)
- Most Lupus sufferers are women (teen - menopause); Black and Latino women are 3x more likely to be diagnosed with Lupus
- A flare-up is when your Lupus becomes active (possibly life-threatening); remission is when it remains dormant
How Lupus affects my daily life (now):
- I often having aching joints
- I get sores in the roof of my mouth when under stress (flare up)
- I have sensitivity to the sun
- I get extremely tired (need 10+ hours of sleep per day so I often go to bed early or sleep late)
- I have to take medicine daily
- I used to have protein in my urine (kidney malfunction) and if I have a slight flare up it shows in my follow up urinalysis.
How I cope with Lupus:
- I set an alarm to remember to take my medicine daily.
- I surround myself with people who are mindful of wellness (they don’t have to play doctor, but they should respect my decision to sleep more, etc.)
- I lather on the sunscreen
- I exercise to keep my joints from hurting and my bones strong (prednisone effects)
- I stay out of air conditioning (hurts my joints)
- I remove all things stress-related from my life (stress is a major trigger for me)
- I do salt water rinses during mouth sore flare-ups
These days I am traveling often and it is easy to forget to take care of myself. Thankfully, my boyfriend is traveling with me now and often gives (annoying) reminders about my medicine, water intake, sunscreen, and rest. When I was traveling solo, I didn't have that, and had to stay really organized and on top of my Lupus care regimen. But I made it and I am now the healthiest I've ever been (as per my last doctor appointment).
I believe I can stay that way as long as I stick to the essentials. Stress and inadequate rest, in my opinion, are the two big triggers. I aim to be mindful of how I treat my body so I don't experience another big flare up like I did three years ago.
Did this answer any questions you had about Lupus?
If you have more let me know!
If you know someone newly diagnosed, or feel like my Lupus experience matches yours and want to share it with a loved one, PLEASE DO!
There not enough talk about this incurable disease and we've got to increase awareness in order to make change and find a cure.
Thanks for reading.