“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 the fatigue abyss. This is when you need 15 hours of sleep.
This is when you, alone, know how bad you feel.
It’s the last day of the steroids and I start the injections of methotrexate tomorrow. Crap. The shot hurts and the medication side effects hate me. But it’s better than throwing up the pile of pills I used to try to choke down along with all the other slew of pills.
It’s just life. It’s my life. The hard part is having to cancel on friends and events because I know I won’t have the endurance to meet the ladies out, ride my horse, get out of the house early, last the whole day with collapsing with chills. It’s hard when I need so many hours of sleep. It’s crappy. But then again, I have to cheer that I’m alive. I wake up and see and hear the birds and go play with my horses.
My labs are off. I’m trying so hard to keep the dizziness at bay. The last thing I need is a calamity.
Yup. My name should have been Jane aka Calamity Jane. (Was she really clumsy?? Or is it a myth?)
The rash is very faint. Thankful.
Well, that’s it for now. Just keeping you all up to date.
I am hoping and sending up prayers that you all are in remission to never see the dragon again. I just heard of a patient that had a bad ending. The dragon won. Damn that dragon !!!🤬😡🤬😡🤬. I cried for her family. She was only 36. 😢
Please stay healthy friends.
Drop me a line to let you know how you all are doing.
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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
I too have Still’s disease and have been diagnosed since 2011. I have been on a journey of healing and tests and drugs ever since. We are a small group of people and there is no information that is definitive about our diagnosis, or treatments. All I know is that you have to be your own advocate and pursue a variety of treatments that work for your overall health.
Yes, I agree with you. Since there are so few of us, we all must become very knowledgeable of our disease. People just dont get it. They could never understand, and I wouldn’t wish it on anybody. But many us become quite aware of what works and what doesn’t pretty quick after we endure flare after flare. But hopefully never again🙏🏻.
Wishing you better health and wonderful energy to spend doing the things you love.
Dear Claudine, I pray that you feel the hug to give you strength to do what you can do be okay! It’s horrid when we have to pay attention every day so that we can function and hopefully enjoy things. Fatigue and stress are the enemies. It’s freaky to see that faint rash…
Wish you bright days. Hope you can sit outside and feel the sun and enjoy some beautiful fall weather.
Take care dear warrior,
Dear Patty, I hope the dragon has left you and has run a million miles away from you! Wishing you healthy days full of joy and energy. Although, we both know, not too much energy, because it usually backfires! Heres to good health to both of us for all the days ahead. 🙂