As previous readers know, my husband has Primary Adrenal Insufficiency, I do not.
One of my pass-times is to do quilting, and on New Years Day 2023, I decided to try and complete a quilt I was making.
I was using an embroidery module to quilt around the edge of the quilt so the machine was running at a good speed, without my control.
Derek was just getting up.
Not thinking, I went to pull away, a loose thread on the quilt. The frame it was in, was moving towards me, so the thread was coming closer to me, and away from the needle. As I grabbed it, the hoop started going very quickly in the opposite direction. I had hold of the thread, so my hand went with it. As the needle landed in my thumb I realised what had happened. But before I could react and turn the machine off, the needle came down for a second, 3rd and 4th bite at my thumb. Each impact doing more damage.
I let out a very loud yell and Derek called back, “what’s happened, what can I do”. Knowing the mess my thumb was in (I had released it from the machine and was heading to the kitchen sink, I yelled back “Not you, BJ.” My adult son was up stairs and I knew he could help where Derek would just feel sick as the adrenaline tried to surge through his body.
BJ had a quick look to see if he could see a needle in my thumb as I knew the needle had broken off. It wasn’t there so he wrapped my thumb in sterile dressing, I put a tea towel around it, and BJ went up stairs to get dressed.
I was thankfully already dressed. I went into the bedroom where Derek had stayed, and told him what had happened, and that I needed to go to the Accident and Emergency (ED) room at the hospital.
I then asked him about his steroids. He had taken 10 mg on waking, but that was several hours earlier. He said he had taken 10mg HC when I told him BJ needed to help me as that was his indication that what ever was wrong, was bad. I told him to take another 10mg (20 in total) as that was the minimum he needed.
We got to ED and checked in. We were told we would need to see the Plastics team for this type of injury, but that it was good as their team was on today, so we wouldn’t have too long to wait.
As good as their word, we only waited an hour before we were called to a back room to be assessed. First things first I had an x-ray to see if the needle was stuck in there still.
Derek waited in the treatment room while I went for the Xray. It only took one shot to see the cluster of needle in my thumb. The technician then took a second one, from a different angle, where they could clearly see 4 pieces of broken needle. Thankfully Derek wasn’t there to see the image.
After 10 years of living with Derek and his AI I knew the signs of low cortisol. I went back into the treatment room and looked at him. I immediately told him he needed to take another 10mg as the 20mg he had taken was clearly not doing a enough.
A Practice Nurse came in and gave me what’s called a ring block (local anaesthetic all around my thumb to numb it). It took a long time to work, but once it had he had a poke around but couldn’t find the bits of needle.
“Sorry, I can’t reach them, you will have the wait for the surgeon to come and have a go.”
Within 30 minutes, a Plastic Surgeon came in and took us to a treatment room where she started working.
The whole time Derek was sat in a corner, barely holding on to “normal” function. 2 hours after the 10mg, he took another 10mg.
The surgeon finished her first go at finding all the needle (7 pieces in total) and got the call that she needed to go into surgery for a more serious case.
I was left to have another x-ray and see if she had got everything.
She hadn’t.
So we had to wait until she finished the more urgent surgery, which took 3 hours, not one, before she came back.
She then had to re-anesthetise my thumb and start digging again. She found 3 more tiny pieces and stitched me up.
Derek took another 5mg of hydrocortisone.
It got to 7pm which is his normal time for taking his nightly dose of 2.5mg, he took another 5mg.
Over the day he took a total of 60mg of steroids. This was 2.5 times his normal daily dose. This didn’t make him feel good, but it stopped him from feeling sick or going into crisis.
As we sat waiting during the day, we joked that I injured myself and went to ED, and he would stay the night. In fact, this is no joke. Had we not both had the knowledge of how his body reacted to stress, and the share bull headedness to ignore the naysayers that insist you contact your Endo before taking a stress dose, he would very clearly have ended up in hospital in Crisis. And on New Years Day, we would not have been able to call an Endo to get “permission” to stave off a crisis.
STRESS CAUSES CRISIS. It is a fact that most with AI know. But isn’t also something many Endos don’t seem to get.
I have never been one to ask the Endo if Derek should take extra cortisol. Since his last crisis in 2014 (the last time we listened to an Endo on dosing, and low cortisol symptoms) Derek has not had a crisis. Rather, he has had several illnesses that have made him very sick, or several stress events that Could have made him very sick, but we have managed his AI and left the other things to the medical profession. In doing this, he has not had a crisis since August 2014.
We are very strong advocates for knowing your body, knowing your low cortisol symptoms, and no, don’t over do steroids, but do take them when needed.
I see a lot of people who clearly need to updose, who are afraid to, and are told “call your endo”. It worries me that this is happening.
We were already starting to learn about his condition and his symptoms by 2014 but when we did call to ask should he updose for the symptoms he was having, he was told no, it wasn’t in the books as a symptom, therefore it wasn’t low cortisol. We now know that for Derek, what he experiences IS a symptom of very low cortisol, and we updose accordingly.
Stress CAN cause a crisis, even the stress of seeing a loved one injured.
And for those saying, well you should have left him at home. No. Derek agrees, he probably wouldn’t have had the brain function to take the extra cortisol without being told in the first few hours, and not knowing what was happening, my son would have gone home at some point to find him in Crisis. He was better off with me, where I could keep an eye on him.
Living with an Addisonian 