(I have found that the AS patients whose AS is not under control, who aren’t thriving, who end up with double whammy issues – one with AS and cancer, don’t continue blogging. It’s the “I’m so strong, I have run 29 marathons despite having AS” people who keep their blogs up. It’s the ones who don’t have it as hard. It’s the ones who aren’t suffering MUCH, who keep sharing their successes and triumphs and how ‘strong’ they are… It’s very few who keep telling their truth. I’ve only found one young lady on IG who is open. Who shares the better days, and the awful days when she needs a walking frame- despite being on biologics for years, now moved onto infusions as the biologics didn’t really help much.
So, here I am. I hope to continue as long as there’s a reader. And if I join the “my AS is under control” group, I won’t post about it, but more about my other life. The other issues that are chronically mine by virtue of belonging to my dear children-the autism, the ADHD, the vision therapy. I don’t want the sufferers to feel alone. And that’s how I feel. I’m glad others can run up 10 flights of stairs. I can’t even walk up 5 flights of stairs. And I know there are others who can’t either. We will keep each other company. We will be strong despite our bodies weaknesses.
People need to know that AS is not the same for everyone. They need to not look at so and so who’s doing awesome, and expect you to be like them. So, while the sick ones drop off, I will continue. And I hope they aren’t like the ‘celeb’ I’d never heard of who killed himself due to pain. I hope they’re just tired of blogging the same old story. I hope they’re still alive… Even the one who began his terminal cancer and AS blog. I hope you are silently surviving with much support.
Now we begin my original blog post for today.)
Like, seriously… This has been hell. True hell. I recently DREAMT I was at as hospital begging for morphine and I think it’s that bad that if I could, I’d ask for it!
I now know for a fact that NSAID do help me, if they’re at the right dose. I also do know that I’m no longer a “I only get swollen and sore in winter” patient anymore. When I was still on the NSAID, I wondered if perhaps my fingers were ok not because of it, because of Spring.
I have no more doubts. Even my big toe is crying. Yesterday I wanted to type but both hands were swollen and stiff and so painful. I didn’t know it would get worse till my HAND pain woke me in the night. Seriously!? Come on!
Yes, the Exinef 90 made a huge difference.
But…They say that if you go off a biologic, your symptoms can come back with a vengeance. Like, BIG time. And damage can speed up. Could that be it? Can it wreak havoc even though it had not made even half a dent in the pain and stiffness and fatigue? I thought you’d only feel the impact if it had worked. Now, I’m not so sure.
All I know is that hell is back. All I know is that I’m back at the point I was at when I thought I’d give it one last shot at diagnosis. I’m right back feeling the pain that made me beg God to just kill me.
My husband said that he was watching on video as I took the little four on a walk on Monday morning. He said he sat there watching his phone screen and thinking to himself, “What is she doing!?? Where is she going? She is already walking like she’s suffering.”
When we take walks, I don’t realise my state. He always tells me I’m limping. I took a morning walk yesterday as the sun is now rising early. Oh.my.word. He’s right. I stay limping early. And by the time I turned back home, it was a link with horrible pain in my right SI joint. I wondered what others thought as they watched me. It was too visible.
I am not at my best and I have to go quite a distance today to go see a gastroenterologist and ask for a colonoscopy. Let’s hope he’s a good old man. I know he’s old. He’s been at it for 40 years and he looks old. I hope he’s like the obstetrician who delivered the twins. 🙏🏾 Let’s hope it will be worth it. We need all the good doctors we can amass.
They said I should write a book 