The last flare ended and I got the OK form the MD on June 14th, 2019 to stop the meds. YAY!!!!! Celebrate!!! I should have written about this then, but I was not sure if I could celebrate quite yet. And then after a month, I just felt fine and kept hoping that if I didn’t pay attention to any thought of Stills I could keep skating under the radar. Unfortunately, Ive noticed my tactic is, if I don’t think about it, this also means I avoid my blog, which is not good for me or anybody.
I know I have found great support with this blog and the Stills Foundation Blog when I was suffering at my lowest points, unable to walk, and function with this disease and near death. There were times I was so afraid of dying, the disease was not in control for several years. And this is how terminal thoughts arise from constant pain, and suffering. (But enough of this ). And then when things start going really well with my health and i get SO happy and I skip along like a dopey unicorn and I forget to blog. Im sorry 😦
However……things are always going well, until they aren’t. As AOSD sufferers, or as victims? I usually feel like a victim with this horrid disease. Ambushed out of nowhere.
But things go very well for a good amount of time until severe stress affects us. That’s the crazy thing about AOSD, stress can kill us. What a strange concept right. In this world of chaos, financial disappointments, personal relationships that start out fine and end up toxic, learning that friends are not really friends at all, just sorry puppets in a mascaraed, animals that are injured and needing emergency help. And this ridiculous, absurd heat of 110 🔥 in Arizona and saving a life.
This is stress. Some of it, I can avoid by just using mindfulness, other times mindful gets thrown out the window and my instincts to help activate and my tender heart must help. And in this horrid heat. This combination can kill me.
I slept 14 hours last night. The drenching sweats disgust me. Nothing worse than cold wet sheets, soaked hair and night clothes and shivering to a degree of hurting my jaw due to the shaking.
Ive never been the type that can walk by an innocent injured animal and just hope for the best. Nope. I dive in with my whole heart and do everything I can. When friends need help, Im the same way, only to find out afterwards, many times they are a selfish little crumb of a person and I just happened to have a heart and come to their aide. All off this takes a toll on the immune system. I can change this. I must change this to save my life. AOSD can kill. My animals need me. Mindfulness. Mindfulness. Where does it go when I need it most? Practice. Must practice.
The unfortunate thing about this disease is that we never know what the next flare will bring. I can handle the chills, chattering teeth, drenching sweats and fevers, rashes and joint pain. But, along with all this, yet there’s more. Sometimes it attacks the liver, the next time the lungs. One major organ is always affected. Its the heart that scares me the most. If it attacks the heart………..
I need to remove all stress. Yeah, good luck with that. I guess, all I can do, is be more mindful and celebrate each day (without the crazies) and be with nature and be with animals.
So if this flare doesn’t become a full flare and I caught it time, Im going to have a glass of wine and cheer “here’s to you stress! I hope you step on a Lego”
Stay healthy my friends
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.