Those words rang again in my head tonight, "you know that can kill you, right?" and I couldn't help but realize how much my life has stayed the same since I heard them. In December 2011, I was diagnosed with Secondary Adrenal Insufficiency after 4 cortisone injections within 8 weeks. It pretty much worked out to an injection every two weeks. I knew that steroids had a lot of scary side effects, unfortunately, even the fliers that go along with prescriptions don't share the information about adrenal issues and steroids. I learned the hard way with a 5 day hospital stay where I came very close to dying. If you want to read more about it, I wrote a post here explaining my experiences.
You would think that I wouldn't be able to take steroids anymore but it's just the opposite. Since my adrenals don't work as they should I take a drug called hydrocortisone every day, it keeps me alive. Without it I would go into Adrenal Crisis, shock, coma and die. Your body can't function without cortisol. You would also think that I would never have another cortisone injection again. Wrong there, too. I have RA and if we want to keep me out of the OR, injections are pretty much my only other option (thankfully, Actemra has my RA controlled, not remission but much better). Since I've been diagnosed with Secondary Adrenal Insufficiency I've had 4 surgeries seeing as I can only have 1 or 2 injections a year.
So. I must be militant about telling people that they should never use steroids, right? Nope, I warn people of the possible side effects. what happened to me and tell people it can happen to them if they don't wean appropriately or have too many injections in a short amount of time. (Doctors are starting to become aware of how much damage repeated injections in the same joints can cause and also that the body can't handle steroid injections 2 weeks apart like I used to have in my back without their adrenals shutting down for good. The Doctor that gave me the injection that brought on my SAI has changed his practice and gives no more than 3 injections in a calendar year.)
Imagine my surprise this evening as I was talking to another patient about the risks of steroids, Adrenal Insufficiency and POTs and in my head I could hear my Doctors voice in my head saying, "You do know this can kill you, right?" My doctor believed that I was very loosey goosey with the way I continued to make my choices for my health. I had cut down from 10 injections a year to 2. Both of those injections I went to him for so he would know that I wasn't going elsewhere. I now realize that this wasn't about me, it was that he had lost his nerve and he was projecting his worries and concerns on me, I didn't realize this then.
As I talked tonight and warned a friend that steroids can kill I thought to myself, sometimes no matter how much Doctors think they know their patients they can be completely clueless. I was well aware of how dangerous steroids can be and I probably will be for the rest of my life. I'm one of the biggest proponents when it comes to steroids and the sides they can bring. Almost all of you know or have heard me be a pain about what a love/hate relationship I have with steroids.
Yes, I'm well aware of "you know that can kill you, right?" I laid in a hospital bed reading about what SAI was and becoming more scared, I passed out on my bathroom floor and ended up back in the ER for a stress dose 2 days after being discharged. I'm the one that went into crisis after my surgery wondering if I would die since I made it to shock stage before I got my...wait for it, steroids.
The difference between him and me? I decided to fight, you can't live scared when you're sick, you can't lose your nerve or every decision you need to make will become the biggest one ever. That line circled through my head and I thought here I am educating another patient in what can happen so it doesn't happen to them, just like I did in 2011 and I will keep doing until I die. I win, because I know I'm the person I believe I am, not the one he thought I was and just knowing that is worth everything to me. I hope SAI doesn't kill me, but if it does at least I know that I did my best to educate others, I didn't give up, I didn't lose my nerve, I picked up and fought and it's 4 years later and I'm still fighting and still alive.