2018 and the beginning of the school year with Adrenal Insufficiency

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Gamerboy and the Chicklet are again attending the same school, in a suburb that is 16km away from my home.  There are no buses from my house to this school, because I live in an area very poorly serviced by public transport.  The kids attending this school is the main reason for me deciding to move, either very close to the school or at least on a bus route.  There are other benefits of moving as well, obviously.  But access to a good school for both of them is the main one.

The school year hasn’t started well for the Chicklet.  She has no friends, and last night she said she wanted to drop out, or change to a different college!  (In Australia, in the ACT year 11 and 12 are called ‘college’).

I refused to discuss it. It’s been two days. She needs to learn to stick it out!  Changing schools will change nothing.  She has friends at a different college, but she chose this school.  She has to give it time, and she has to try harder, and she has to stand by her decisions!  I have moved heaven and earth to get her into this school, and the move is mostly for her benefit.  She will continue her schooling at this college, or she will go and get a job.

Gamerboy has also had a rough start. His first day was yesterday, and he spent the entire day alone, with the exception of ten minutes when a group of boys were pointing and laughing at him, and bullying him.

He told them to sod off.  Good for him.

He is unhappy there, but he is perservering. He as said he’ll spend the year focusing on his academic studies and ignore the bullying.  He admits he’s lonely, however, and misses having friends.

But its only day 2 for him. He understands it will take time, and friends will likely come.  And if they don’t, he will be OK on his own.  Kids with Aspergers often have a hard time making friends.  I’m sad for him, but very proud.

For me, the big shock has been how incapable I am of actually GETTING them to school.  I need to drive 32km in the morning to get them there, and 32km in the afternoon to pick them up.  And it has broken me, in two days.

I don’t have the energy to do this.  Yesterday I realised that I had all the signs of Adrenal Insufficiency, which I was diagnosed with last year.  Nausea, vomiting, diarhea, faintness, dizziness, extreme fatigue, confusion, back pain (not the usual back pain, higher up).  Adrenal Insufficiency is NOT the same as adrenal fatigue, which is not a medical diagnosis at all.  Adrenal Insuficiency is diagnosed by a short synthacten test.  Blood is drawn and your cortisol levels are measured.  You are then injected with the hormone that stimulates cortisol, simulating a crisis.  If you have Adrenal Insufficiency, your body doesn’t respond and doesn’t produce extra cortisol.  The treatment is simple, replacement of your natural cortisol with a synthetic corticosteroid, in my case, prednisone. It becomes complicated when there is a stressful event, or crisis. Ordinarily the body will produce extra cortisol to manage the crisis. My body cannot do that, so I need to up my prednisone dose, which can be a very tricky business.  Not an exact science, to say the least.

But that’s the best treatment available.  Get it wrong, and I need to be admitted to hospital, it can be fatal.  Get it right and I improve quickly.  Take too much prednisone, and I get a load of prednisone side effects.

Right now I’m still feeling very low energy.  All I can do until pickup is rest. And then drive to the gastroenterologist appointment.  It’s not going to be easy.

The prednisone increase will keep me going until the stressors in my life reduce.  Problem is, my whole life seems to be a ‘stressful period’ but the last few weeks have been tough and needing to get up early every day and drive a car just pushed me over the edge.  Selling the house, losing my hair, dealing with the Chicklets colonoscopy and IBS, Gamerboy’s anxiety about school, on and on.  Its not a surprise that I crashed, just that I crashed so quickly.

Yesterday I boosted my steroids, today I took another 25mg. I am ok. Not good, but OK.

Adrenal Insufficiency is a serious disease.  Untreated it can lead to Adrenal Crisis, which can be fatal.  Yesterday I was headed for a crisis. It took me time to recognise it, but I finally put it all together.

The treatment plan is to increase my steroids until the crisis period is over, then taper back down to my standard dose of 12mg.

It is a band-aid, and not a great one at that. But it will keep me upright and breathing, so I have no choice. There are ofcourse many side effects of prednisone.  It causes terrible mood swings, weight gain, elevated blood sugar, elevated blood pressure…I can’t keep up the higher dose for long.

It’s a constant battle, and it’s a hard balance to achieve.  I seem to have stabilised, though I have zero energy and need to rest until pick up time.

Both kids have very different time tables.  At college, there are 7 ‘lines’ or class periods, and the kids all have 5 classes, or active lines. The other lines are off periods, where they can do their homework, assignments or socialise.  Or go home.

Because their timetables are completely different, they have very different start and finish times.  I can barely manage two trips per day, so when one starts late, they just have to both go in early anyway, and kill time at school until their classes start.  And same for if they finish early.  Gamerboy realises how sick I am, and is understanding and accepting.

The Chicklet, on the other hand, is making my life hell.

I dropped them off this morning (not an easy morning) and all the way to school she was complaining of stomach pain.   She spent the last two days eating junk food, so of course her IBS symptoms are returning.  I file this under ‘a learning experience’ and ‘your own damn fault’.

I will NOT let her miss school over this.  I was clear about that, and she sulked.  I believe she’s in pain, but the pain is going to come and go.  Possibly for the rest of her life.  She has to learn to manage it, and she may as well start now.

I dropped them and headed for home. I hadn’t even made it home before the text messages started.  I’m so fed up with her selfishness.  She knows I’m very sick. She knows I cannot and will not turn around and drive back and pick her up.  But still she tries.  It’s her personality, that selfishness always comes through.  She pushes and pushes and pushes until I get angry.

So I told her I was not going to be there until 3:15pm and then she’s going to see her Gastroenterologist, and she would just have to manage until then.

She’s not happy, but she’s just going to have to suck it up.

 

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