Support for SLE Diagnosis Journey

If I’ve learned anything from all the saints I’ve studied, it’s that you can’t do it alone. And if you think you can do it alone, this world has a way of reminding you that we are a community meant to lift others up, to help each other when we struggle, and have all the faith and hope you can muster.

And if I’ve learned anything about the care and help of others, it’s that I need to take my own advice and remember what I would say to someone else in my shoes.

I was diagnosed with SLE, and subsequent Sjogrens, arthritis, chronic fatigue, and fibromyalgia earlier this year. I’ve had more scans, procedures, biopsies, and appointments than I can count. I have a wonderful care team, but as with most folks, a really terrible health system. I’ve been on and off over 25 different serious prescription medications, but none of the oral meds worked for me. I’m now on a new infusion drug I have once every four weeks. The results of which take an average of 3-6 months to notice. If this proves ineffective, the next treatment plan includes chemotherapy.

I haven’t been able to paint, draw, write, or even drive since December. Because of this, we’ve lost the majority of our income. Disability is complicated (especially when you’re self employed) and there is a mandatory 12 month waiting period before I can apply. What are people supposed to do until then?

I was hoping life wouldn’t come to this point, but it’s time to ask for help. I don’t like asking for help, I like offering and encouraging help for others. But if I believe in these saints I’ve gotten to know so well, then I also have to believe that we just can’t do it alone. And I can’t do it alone.

I appreciate you so much for taking the time to share or donate. It truly means the world to me. It’s so hard to concentrate on healing and taking care of myself when I have looming bills hanging over us and constant worry about when and if I can pay for something.

Love K