Despair amongst the hope

>> Tuesday, December 4, 2012


There are only so many negative statements one can hear before they give in. Before he or she says: OK, you win.

That breaking point is different for every person. For some, they claim they never entertain the idea of throwing in the towel. For others they avoid the situation altogether so they never hit a giving up point, they simply never engage. And then, there are those that fight and fight and finally say, after a very long and particularly bad set of circumstances, I give up. How many times can one hear: ' this may be as good as it gets', or 'it may be case of bad brain and you need to get used to it', and my favorite to date is 'what more do you think we should do?'

What more? Everything. Everything you haven't tried, everything that might not make sense but you should try.

Bug has been having more seizures lately. The one I just saw, has him almost vegetative. Apparently, I am the only one that wants to so something about this immediately.

3 ER trips in 5 weeks and we still don't get stepped up in the queue. Still Primary Children's Neurology says we have to wait 5 months. What good is that to Bug? That's over 400 seizures. So I did what I never do....I settled for a Nurse Practitioner. The reason I don't usually sign up for an appointment with the NP is simple: to get anything approved you still have to wait for the Doctor. And with Bugs diagnosis...I will have to explain it, yet again, and fight the fight and then settle on waiting because the NP has no clue what to do. Seriously? And this is not socialized medicine yet. How much worse can it be? Their waiting to test Bug may be the reason he is lost to us, probably forever.

Because I have heard twice: it may be too late.

So, I sit here deciding where to go and how to digest this. Meantime, I feel like I am watching him die. Merry Christmas.


2 comments:

Jennifer December 5, 2012 at 8:42 AM  

Oh my dear friend... I wish I lived closer so I could listen, take your mind to another place and fight beside you... Hugs.

Nett December 5, 2012 at 6:16 PM  

Thanks JJ, I do too. The fear those Doctors would encounter...:)

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Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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