The past ten days have been a wonderful, wonderful ride. I’m alive again!
I’ve upped my Hydrocortison daily dose from 20 mg to 35 mg. It may sound like a lot but actually it isn’t. Anywhere between 20 and 50 mg per day can be normal for an individual. 35 mg seems to be my sweet spot. I can feel when it’s too much or not enough. Very interesting experience!
I also learned how to spread the dose throughout the day in a more physiological way (take 2/3rds of the dose before noon, take it in increments of 5 and 10 mgs)
Alive again! I’ve got energy! I’ve got stamina! I’ve been doing things I haven’t done since 2008. Things like taking a shower before bed. Just because I felt like it and wanted to feel the warmth of the water. I could never do that because it would affect homeostasis badly. I had to plan my showers. Each day I could chose to either take a shower or cook dinner. Couldn’t do both.
Now I can :)
I’ve taken walks into the city. I’ve started to do a little bit of exercising. One morning I just took the car and drove to my friend, just to have tea with her and eat all her chocolates, and then I drove back home and did some other things for the rest of the day. Without crashing.
Reverse Therapy is a tremendous help in keeping things fun. Doing things because I want to do them, not because I can do them.
Suddenly giving my body the hormone it lacks has affected other hormones. I’ve noticed changes in Thyroid hormones, Testosteron, Estrogens and Progesteron. Insulin too, probably.
I have the good sense to do HRT on a dose that doesn’t exceed normal daily production so any effects I have filter out of the system within a day. It’s interesting how I can influence it though. With food, with Progesteron cream, with calming the nervous system.
Today my medical tags arrived. I’m going to wear one of these whenever I leave the house and am in risk of getting in an accident or experiencing dehydration.
I may order some new ones, with less info on the front but more readible. These tags are quite small in reality. I doubt anyone who finds me collapsed in the street will notice. And/or has her reading glasses nearby to read the information ;)
- I will wear it with a white band with red crosses on it. I’m thinking of embroidering them myself. I could also learn bandweven…
- I will wear these “upside down”, not in the way that I can read it but in the way that anybody grabbing my hand can read it. Seems more sensible.
I ordered these medical information tags from a wonderful company here in Holland: Healthband. They are very good, fast and reliable. They keep an eye out for optimum spelling and lay-out of the text and won’t start engraving until you give the final consent. Really good costumer service!
It’s a woman and husband company. She’s a diabetic and wears one of these herself. They noticed we lack a good supplier in the Netherlands for sport id tags and medical id and sos tags.
The tags themselves are good too. No sharp edges and quality engraved.
I chose to direct my information towards courages passers-by who find me collapsed or delirious from dehydration. I don’t dazzle them with the medical info, that’s all on the back. I try and tell them exactly what to do:
- feed me my pills. They’re in my bra. Do it! I’m in danger for my life.
- call the emergency services and say this: “adrenal crisis!”
- say the name and dose of the solution of injectable cortisol I need. I want the medical personal to know.
The hydrocortison is wonderful :)
I no longer need a wheel barrow to be carried around in to enjoy life:
It may still be a honeymoon period. I’m still figuring out a lot of things, for example this morning I woke up a zombie, I have difficulty getting things right through the night when I’ve had my insomnia again.
Now I know for sure! When I/you wake up at 3 AM and are wide awake for 1,5 hors, that’s a cortisol surge. It is!
I can now reproduce it. It feels exactly the same.
The insomnia I have had my whole life is that: a cortisol surge at 3 AM. Puzzle solved!
Now onto the next: what causes this surge? That’s one of the queries I’m on now. That and the relation between homocysteine and my weird (scary) heart rhythms that I have since 15 months. Because I’m still doing the mB12 thing, now combined with Phosphadytil-serine which drives another keg in the same methylation system. My GP put me onto this.
It causes mild brain storms, literally. But luckily I can move more easily now and movement is marvellous for levelling hormones and weird brain chemistry. So, I’m off for a little walk now. It’s beautiful weather outside here.