My immune system needs a swift kick in the seat

At the hospital again. This disease just keeps popping up with new ideas to cause pain and endless nonsense. Drawing blood and more blood. I must have 3 ounces left in me by now. Fun times in the neighborhood.I know 100% that this hospital lobby would be more fun if they put in a smallContinue reading “My immune system needs a swift kick in the seat”

Prayers for the best year of health for my and others with AOSD

It wasn’t the best New Year’s Eve Ive ever had, but we take what we are given and do the best we can with it. Wearing dark glasses looks a bit mysterious, but also kind of intriguing! I have 2 choices, I can play that I am a famous movie star that doesn’t need paparazziContinue reading “Prayers for the best year of health for my and others with AOSD”

Now it’s the Left eye. UGH!!!

For the past 4 weeks my right eye was terribly inflamed , extremely painful and horrible headaches all night. The ache was so bad that I would lay flat during the evening with ice packs over the eye to get relief. My sleep was non-existent for days and days. I lay all night with myContinue reading “Now it’s the Left eye. UGH!!!”

Staying positive in a world that can be overwhelming and sometimes negative.

It sure seems that many people are increasingly overwhelmed and losing their cheerfulness. Many of the people I know, appear to be under more stress than ever. This makes me feel a desire to help them sort out their feelings and ease their stress. But I cannot take on the role of therapist for everybody.Continue reading “Staying positive in a world that can be overwhelming and sometimes negative.”

Beware of steroids causing osteoporosis :-(

Well, if it isn’t one thing it’s another right? Remember back on August 6th when I slipped and broke my femur and they didn’t find the other 3 broken foot bones until 3 months later ? Then the cast but the extreme pain brought on the flare? Well, my Rheumatologist had me do a DexScanContinue reading “Beware of steroids causing osteoporosis :-(“

That stupid dragon. It has nothing on me ! And never will!!

I found a unique site that asks to write a sentence about your rate disease. I wrote this. Today I had a wonderful and unique experience. I was washing dishes. I know right ? Wonderful, not!! But, really! Something shifted. I felt happy. I felt calm and serene and home. Yes, home. When I recallContinue reading “That stupid dragon. It has nothing on me ! And never will!!”

Never feel guilty for Saying “No. I need rest” Just put your paw up!

It has taken me a long, long time to learn to say, “No, I can not. I need to rest”. There is no need to apologize. But, I often catch my self saying, “Im sorry”. I am not sorry that I am taking care of me. I am not sorry that I am putting myContinue reading “Never feel guilty for Saying “No. I need rest” Just put your paw up!”

“But you look fine. What do you mean you don’t feel well?”

It’s so hard to have a disease that is so unpredictable and sometimes invisible. This is when I have to put my paw up and say “I’m needing rest and can not participate.” This is hard to understand from friends, especially when the steroids pump you up and you have energy….until you plummet into theContinue reading ““But you look fine. What do you mean you don’t feel well?””

Kick that dragons butt!!!!!

My morning Coffee Doodle today. The steroids are kicking in. Love them/hate them. I am sure you know what I mean. The night time drenching sweats are dwindling and almost gone, the rash has not shown up in 24 hours now. We caught this flare SO early. YEASSS!! Kick that dragon’s butt!!!! — feeling hopeful.