Lupus Life Lately
Last updated: October 2023
Having lupus has been the story of my life. Though life has been living me out honey, I have been hanging on for the best. My doctor recently told me I needed to learn to develop tough skin because me taking everything to heart has my lupus flaring up.
I thought that sometimes I can deal with what’s going on around me and it just hit me like a ton of bricks.
Check on your lupus friends
I have been to the hospital three times last month because of my skin being in a bad flare. It's even more frustrating when people try and tell you why you are flared up. I recently reached my breaking point with being judged out of character and how intellectually intelligent people still seem to miss the point when it comes to dealing with lupus and having a support system who understands your lupus.
Check on your mom friends who have an autoimmune disease because we are not okay. The terrible twos and wanting mom to keep up with their speed is not for me. It's like they never run out of energy. I need to change my medication from benylsta injections to saphnelo injections and this is about to be a different journey so I am long overdue for a relaxation moment.
I realize that words will always be just words and it's just on how you take them. See I know that it is in the way that I eat with my lupus but I also feel it triggers off of one's emotions. One's emotions such as mine need meditation because I am an overthinker, which makes me overly worried and stressed out.
My skin itches profusely and I just can't scratch. I have a flare up on my lower body, neck, arm, and hands. It itches so bad. Then it burns and when it burns you cannot wear anything to cover it because it would make it worse. Skin is its own anatomy itself. Dealing with discoid lupus you never know what you're going to get.
I feel like we are entering the season where my lupus is okay with my skin but my joints are about to be on fire. The pain from the cold is going to have me curled up in the bed like a little baby. It is time to get the heating pads ready and adjust that thermostat so that your bones don’t feel stiff and painful.
Conversations with my doctor
My doctor recently told me I am obese as well. I am sitting right around 200 lbs again and she doesn’t like that on me at all. She told me I should be 150 and under. But you ever feel like due to the medication sometimes you are starving? Well I do and it is overwhelming. Having lupus and having a strict diet be the worst at times.
Then she told me I should do more cardio and I am thinking about taking her up on that offer because right now all I do is weight lift. Sometimes it's best to have a doctor that don’t mind talking to you as if they are your parent because I know then they are not playing with me.
Exercising for better health
So I wanna start going to the gym 5 times a week for 60 minutes. Get on the treadmill for at least 30 minutes and then one hundred crunches per day. Cut out breads, pastas, potatoes, sodas, juices and just drink water and tea.
Having a better health is all that matters to me especially with having children. I want to be here for them no matter what.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?