09/25/2024
I am so sorry I haven’t been able to respond to all the emails and messages. I’ve received well over 700 since Monday. I promise to work through them all this week.
I have had a majority of them asking about Lupus and appreciate all the love, prayers and advice concerning it. I am such a private person when it comes to my health. Primarily because I don’t accept compassion well. I love to be the helper and care giver and not on the receiving end. So it’s been a struggle opening this door.
I wanted to shed some light on what this disease is. Because I feel it’s rarely talked about and for so many reasons. As someone who’s struggled with it for much of my life it’s truly an illness that’s indescribable to anyone who doesn’t have it.
It presents itself in so many different ways at different times. You’ll be in remission for months and have sudden flare ups out of no where.
It affects different people in different ways. I began having ongoing fevers and recurrent health issues at a young age. And since have had multiple surgeries due to ongoing infections my body can’t overcome from bladder surgeries, LEAP procedure, emergency gallbladder surgery and partial liver removal, tonsillectomy, an emergency c section to deliver my twins at 25 weeks… and many other procedures for different things from blood clots to ruptured cysts, and on and on. But I’ve never had flare ups to the magnitude I have this Summer. Typical flare ups for me consist of ongoing fevers, headaches, rashes, fatigue and elevated blood pressure causing nose bleeds a lot of the time.
Recently I’ve been dealing with these as well as mouth sores, busted blood vessels in my toes, severe wrist pain and numerous other issues. If I spend more than a few hours in the sun I’ll be covered in rashes and sores for days.
Sadly there’s no treatment for Lupus.
Hydroxychloroquine was a great help to me but unfortunately it began to deteriorate my eye sight to the point the cost outweighed the benefit.
Steroids are also very beneficial but again the effects are very hard on my body. Spikes in blood pressure, spikes in glucose, and my body covered in bruises. I also take anxiety medicine as stress is a major contributor to flare ups. But am maxed out on the amount I am able to take. And still at times double up on it.
During flare ups you feel literally immobile. The best way to describe it is how your body feels with the flu. There’s been times I physically couldn’t pull myself out of bed. As hard as I tried. And mentally it is torture. My mind doesn’t work. I am constantly forgetting things or mixing things up. It’s so so hard. Especially if your a go go go person like I am.
We are now in the process of testing one of our twins for pediatric lupus as this summer she has unfortunately dealt with sun induced headaches, fever, rashes and other abnormal and strange test results. Autoimmune diseases are just so hard to get answers for, test for and get help for. And mentally even trying new things to see if it helps is draining and finding the energy to start the journey of new diets, medicines, procedures is overwhelming to say the least.
But I’m praying God has opened the door for me to have that time. And the amount of love and support you all have shared truly has been the greatest blessing. I love you all.
