When you learn the news, that your child will only survive by taking 6 small tablets a day for life. It is a shocking and terrifying thing.
What that does to a parents brain is
You quickly realise you are literally at the mercy of the people who make and prescribe these tablets.
It sounds extreme but it is true. Without them she would cease to exist. It would not be a slow process either it would be
a matter of days.
This is why when you are faced with so much misunderstanding. and non awareness about adrenal
insufficiency by everyone including professionals it is so frightening.
I’m sure people think i exaggerate when i say she is life dependant on these drugs.They think i exaggerate when i say a sickness bug could be fatal.
Because she would not be able to absorb these tablets. Her school certainly did not understand the seriousness of this. They simply refused to tell me when i asked if there was a sickness bug going around the class. To this day even though she is no longer
in school i am upset by the fact that they did not take me seriously.
So last weekend following a stay in a London hospital for a 24 hour cortisol profile and other tests. Molly has been feeling
very unwell. I had ordered her steroid (life sustaining) tablets as usual. I went to pick them up and the pharmacist had ordered the wrong ones. She had ordered the cheaper brand which Molly cannot take because they do not do the job they
are supposed to.
The dr put through an urgent request to the pharmacy for another prescription. Stating the generic brand was required. She was now taking these cheaper tablets and suffering headaches was very lethargic and sleepy. The following
day I went to pick them up and again they gave me the wrong tablets.
No one could tell me why.
The next day Sunday morning i phoned the pharmacist and explained my situation. My daughter needed
the generic brand of hydrocortisone. She explained that they were very expensive and that their suppliers would always send the cheaper ones. I tried to explain that this are life sustaining drugs. But i am Quite sure by her tone
she thought i was again exaggerating. She took my phone number and said she would call back.
It was then i had this panic. What if these tablets ever ran out?
It was at this point the whole anger i have inside me for the non awareness to this awful condition exploded. Why the hell does nobody understand?
My child needs these tablets like other humans
need air. This is the whole reason i keep my awareness page open.
Sometimes i just want to forget it all, close it down and just take Moll and manage the best we can on our own.
It is a bit of a sacrifice laying it all out there.
I hate her reading stuff like this, i hate her reading anything negative or scary which relates to her.
But then i think of Rowdy, he was 13. His family and all of the other children and adults who have died because
of lack of awareness and poor treatments and i know i simply cannot give up.
Sat waiting by the phone i felt like i was in some kind of zombie apocalypse. What the hell would i do if a meteorite hit the earth. We would be ok for a while we
are quite self sufficient. We don’t rely on water from the mains, we have the ability to keep warm we can grow our own food. The one thing we cannot do though is keep molly alive. without steroids it is impossible and this is scary.
I imagined myself in this imaginary apocolypse. Walking miles in bare feet to every pharmacy i could find to loot it of any steroids they had. I’d literally do anything to get them. I was imagining
myself trampeling over bodies of people who were left on earth, flooring zombies and fighting anyone who would get in my way.
It was quite some time sat by the phone and i really
had to have a word with myself. My imagination is quite terrifying at times.
I looked outside, there was no Zombie apocalypse i was just waiting for the chemist to call me back.
I stopped panicking about zombies and trashing burnt out pharmacy’s
and then i looked at moll. She was unwell and asleep. Deeply asleep, she had now been on these other tablets for nearly three days…
The zombies immediatley came back. At
this point in time i had no idea if the right tablets had even been ordered
.I ranted and stressed to my friends on facebook. I have met many amazing friends in the past 3 years who have this Condition, or who have a child with it.
friend offered to drive miles to my house to bring a few tablets until we could get it resolved. I then had another offer from a Friend very close by. Suffice to say she became my immediate zombie squisher. I can never be more grateful. I felt
like i had won the lottery. And this is why our community is so amazing. Had i not started my awareness page i would not have met and have so many amazing people in my life. People who actually know exactly what this is like. I certainly
would not have met this lovely lady who saved me on this day with a few tablets.
So nightmare avoided. Moll had the correct medicine, we were all safe again and living back in our our normal happy world.
The pharmacist revealed later that day that indeed they had not been ordered. She tried to lecture me about it being Sunday and about various pharmacutical rules etc.
Even demanded i took the old
tablets back before she would release the perscription to another chemist. One who actually had stock.
I proceeded in angry mother stance to give her a long lecture about adrenal insufficiency and the fact that she should know what she was
prescribing. To who and what it was for. I think it went in one ear and out the other.
Within 24 hours of taking the correct tablets Molly was a different person. She really had been quite ill again. What
ever is in. Or not in the cheaper brand needs to be investigated. Because some people cannot tollerate them. COST MUST STOP COMING ABOVE LIVES
Another lady i know actually ended up in adrenal crisis. She nearly died because she took the
cheaper brand. Im now in contact with the regulators and pharmaceutical companies to try and get to the bottom of this. In a survey i have just put out well over half of the recipients
have experienced these same symptoms with cheaper brands.
All we can do is make sure our drs specify what we are used to and keep up the awareness.
Living in a zombie apocalypse on
a Sunday morning is not something i want to repeat.
And not what i would like anyone else to go through.