2 years today

It is now 2 years today since Derek had his surgery and woke up a changed man forever.  It is 2 years since the Surgery that almost killed him.

We took a path that the week before surgery we hadn’t expected to take.  It’s a road less traveled.  But the people you meet on this path have 2 things they are fantastic at, staying alive despite the best efforts of the medical fraternity and helping others on the same path.

We are still fighting for his health.

An example of this is that Derek went to the physiotherapist today and did a very small workout.  A few step ups on a low box, some arm curls with very low weights, a bench press, with a counterweight bar and no weights, and some rows, again with hardly any weight.  He suffered for it.  2 years ago he would have laughed if he was told that in two years that would be all he could manage and would have problems even with that.

He didn’t manage well.  He started getting light headed, his breathing was laboured, his blood sugars dropped, but the strangest was his body temp dropped.  Normally when a person works out their body temperature will go up slightly.  Today Derek’s temperature went down.  It normally sits around 36.7 – 37 (randomly taken at various times of day).

Today at the Gym it dropped to 34.9  Technically this is hypothermia.  He was complaining it was cold, and it was, but he was so cold he couldn’t think properly.

We got him home, and he had a spa to warm up.  20 minutes immersed in hot water and it rose to 35.9.  3 hours later it is still low, but a lot better than it was. No he is not still in the spa, he got out after 20 minutes.

This just one of the many challengers that we deal with now.

2 years and we are only just learning about this condition.  I can see why Endocrinologists have a hard time of it.  How are they supposed to know how to treat an Addisonian when Addisonians themselves have problems understanding what is happening.

The books don’t say anything about temperatures dropping like this.  The books don’t say anything about your BP going high at the start of a crisis, they say low a crisis is when it goes too low.  But talking to other addisonians, it can go up before going down.  the problem is, the Dr’s don’t understand that Addison’s is not a text book issue until you are so deeply into crisis that you are in ICU, This means that we have to be proactive, as they don’t think you are in a crisis if your BP is “normal”, and are confused when it is “raised”.

These are things we have had to learn for ourselves.  It’s not about what the books say, it’s about learning what Derek’s body says.  For some reason, nobody gave his body a copy of the Addison’s User Manual to read.  Derek read it, but forgot to give his body the information.  And his body won’t give all the information at once, it just gives glimpses every now and then, into what may or may not become the norm.

2 years down and we are just at the start of this journey.

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