I dreamed we were in shul and we happened to look under Coby's shirt and saw that he was covered in hives even though it was nowhere near dosing time. We debated paging the doctor with it being shabbos and 'just hives', but we decided we needed to because we didn't want his reaction to snowball due to our hesitance. Next thing I know Yitz Coby and I are in the car driving to his up-dose appointment with him sitting in his booster seat covered with hives. Jessi meets me in the waiting room and says, 'how are things,' expecting the standard, 'good and how are things by you?', but instead I say, 'bad.' Her eyes widen and she asks, 'where is he?' I said, 'in the car.' She says to quickly bring him in while Dr. Selter says, 'obviously there will be no up-dose today.'
I got so upset about that and say to him that this reaction came out of nowhere, without the dosing and maybe it was just environmental allergies and that he had had nearly 2 weeks of zero issues at the 2.5 level and come on..... why can't he up-dose? I mean, obviously I knew he couldn't up-dose, but I was so flabbergasted as to why this happened out of the blue after so many days of no issues. (IRL that is possible as well.) and I wondered how the hell we'd ever get past this level. Then I woke up.
Sigh, these dreams stick with you.
At least this dream didn't have him going into full blown anaphylaxis- I've had quite a few of those over the years as well.
Maybe one reason I had this dream is because yesterday I learned that in under two months our insurance will no longer be covering epipens. (We have a high deductible, but once we reach it, the epipens had been 100% covered. This year the epipens ate up our deductible so now all appointments are covered- which is good considering I am back at PT three times a week and acupuncture for the next 3 months, and have to see a rheumatologist, neurologist and possibly get more back treatment- so it's nice knowing that those appointments won't cost too much) After August 1st insurance will only be covering a generic epipen.
While I understand that the medicine in both the official epipen and this generic one is the same (I hope), the container/mechanism in which to administer it may be different.
I am soooo worried that if a reaction occurs, in that moment of panic, with shaking hands, as I struggle to hold my child down, that I will screw up. After 6 and a half years of having ingrained into me how to use that epi-pen, what if in the moment of truth, I screw up with the new device?
Even more worrisome, what if he is in school or in camp when it happens? Will the teenagers or teachers in their moment of panic be able to dig through their brain for whatever training they had and recognize which epinephrine device my child has and remember the correct way to administer that one? That thought is terrifying to me!
(And yes I know he is in OIT to make him safer and 'bite proof' and be able to fully enjoy life, but reactions can still occur in maintenance- sometimes from environmental allergies plus the dose tipping the bucket, sometimes if the child is getting sick- so he will have to continue to carry an epipen.)
I truly don't mind using generics for regular medications---- but this is a life-saving one.
And so I care.
I care A LOT.
... but all MYLAN cares about is having money.
and more money
and even more money
exuberant amounts of money
because the several billion they already have just does not compare to the lives of millions of people.
All that matters to them is that they have another buck to shove in their disgusting sweaty smelly obnoxious pockets.
DISGUST. They disgust me.
And tomorrow we try to up-dose Coby again. And my butterflies have began pounding their wings.
This appointment is scaring the bejeebers out of me. While he will NOT be up-dosing to where we had hoped he would be, and we did lose another week of progress, they will still be trying to up-dose him an entire peanut and get him past the point of his 'significant reaction' (doctor's words) that he had last time. (He reacted at 3, and we will be trying to get him from 2.5 up to 3.5)
That terrifies me!
FEAR
After all he is up-dosing a full peanut higher than what he has been on and it is a HIGHER level than what had brought upon his significant reaction after his last appointment of 3 peanuts (which caused him to down-dose to 2.5). He has not yet been able to handle a full peanut increase (though doctors are hoping that the further along we get and the smaller percentage those full peanuts become, his body will acclimate.)
I am also bummed.
DISAPPOINTMENT
We are once again behind where we "should be".
If all went well last time, he would be up-dosing to 4 peanuts, and while tomorrow's dose is just a half a peanut lower than the 4, it is causing us to push off graduation date by another week.
Yet again.
(If I count from the beginning everything that caused us to lose a week of progress- reactions, vacation, snowstorms, illnesses, holidays- we are now 16 weeks 'behind' where we would have been had it been a completely smooth journey.).
I am also sooooo proud of my boy and his optimism and his 'go get 'em' attitude.
PRIDE. JOY.
I am so proud that he is still chugging along and he will not allow anything to bring him down! He truly is my hero.
 |
| JOY- that we continue upwards ANGER- that we fell behind SADNESS- that we are not where most others are by this point DISGUST- FU Mylan! FEAR- uh, yeah, big time! |
But there is one 'feel' that doesn't live in Riley's brain (if you haven't seen INSIDE OUT, then what are you waiting for????) and that is
BRAVERY/COURAGE/DETERMINATION/HOPE.
Because we are not giving up. We may feel all the feels, especially that fear, but we have the courage to do it anyway.
After all hope is the only thing that is stronger than fear. And so we will try again.
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