Isolation Diary Begins

March 15, 2020 - Leave a Response

I know it’s been a while since I last blogged, but a lot has happened. My disease has gotten quite a bit worse and my poor body has seemed to fall apart piece by piece. I have also developed several other problems to go along with my lupus – high blood pressure, profound hearing loss, toxic maculopathy from one of my lupus meds, osteoporosis, degenerative disc disease, Sjögren’s syndrome. I have had sepsis twice – once as a result of mismanagement of cellulitis which resulted in the removal of most of my triceps in my left arm, and once after I got a bone infection in my left foot which necessitated a three month stay in the hospital and a rehab facility so I could get IV antibiotics for 8 hours a day until the infection was finally cured.
Today’s blog begins on Day 3 of my isolation because of the coronavirus. I have been on steroids for the past 24 years. I am severely immunocompromised. So, I can’t take a chance of contracting the virus. I live alone in an apartment complex with Sam, my guinea pig. My daughter lives nearby, but I can’t see her because she is not isolating. I have meds, food, water, supplies for Sam and, of course, plenty of toilet paper and hand sanitizer. I have comfortable furniture, a nice tv, Netflix, Hulu, cable tv, internet. But I’m lonely already. Not having any human contact is really hard. Talking, texting, FaceTiming are not the same as being in the same room with someone. I know it’s for my own good. I know it’s not forever, but it’s still hard. I’m going to use this “Isolation Diary” to vent my feelings about being alone for however long it takes.


The Butterfly Link

February 9, 2011 - Leave a Response

Ok. You’re probably wondering where I got the title for my blog.  Well, one of the first lupus symptoms that I exhibited was the “butterfly rash” across my cheeks and nose.  Although I didn’t know it at the time, it is abundantly evident when I look back at pictures of myself from junior high and high school.  My cheeks are so “rosy”.  Also, from as far back as I can remember, I have been afraid of butterflies.  Go ahead and chuckle.  I have no idea why a little creature that most people think is beautiful causes me to shrink in terror, but it does.  So, having something on my face called the “butterfly rash” was particularly horrifying to me.  But, it made me want to fight the disease harder.  I was not going to let this butterfly disease get the best of me.  That is why I am battling the butterfly every day of my life!!

Hello World!

February 8, 2011 - Leave a Response

Hi!  I am a 30 plus year Lupus survivor.  I was diagnosed with Systemic Lupus Erythematosus about 15 years ago, but have had symptoms since I was a teenager.  I have been through a lot with the disease and have discovered many creative ways to deal with the illness and the medications that I have had to take over the years.  My goal with this blog is to show lupus sufferers and their families that a lupus diagnosis is not the end of the world.  You can have a good life.  It might not be the life you’ve always dreamed of, but it can be a good life nonetheless.  If you have any questions for me, please email me at