Monday, March 30, 2015

Spring Transplant

I get a brain transplant tomorrow, which is my brain's hilarious way of saying nerve-block.  It's some kind of combination, residual side-effect of too much daily Topamax, plus recovery from the hellgraine when I didn't take my normal rescue med a couple of days ago.  It has been difficult to distinguish between the normal transient aphasia that comes as a precursor to full blown migraine, and "Dopamax Syndrome", where you can't find the word you want or the wrong word comes out.  Either way, making good words has been more difficult overall for the past few days.  But on the grand upside, I haven't taken any rescue meds going on two days!

Confession:  I'm a little worried about tomorrow's physical therapy followed by the nerve-block.  I'm not afraid of needles, but since I'm supposed to be weaning down to a LOT LESS rescue meds, I have a lot of questions, which can really be boiled down to the main question, will I ever stop getting migraines, or even will I ever stop getting enough migraines all the time so as to enable me to function at least quasi-normally?  These questions can be even further broken down.

-- Will the nerve block work?
-- If the nerve block works to stop the migraine, will they just come back worse as they always do when they seem to stop and I become temporarily functional?
-- Maybe between physical therapy AND the nerve block this time will be different.  No really, this time...
-- Am I going to curse heaven and hell more than I already do for ever letting me get my hopes up?
-- At what point does traumatic stress turn into post-traumatic stress disorder, or can you just stay in traumatic stress forever and if you do will your kids still be functional humans?

Honestly, I'm afraid to even start thinking again.  I have so many more questions.  We don't even have Sasha's new meds to try yet, although that should happen sometime this week.  (I adore our pharmacy, so much.)  My main feeling is exhaustion, and my main thought is questions and trepidation.  That's probably normal when great amounts of change are on the horizon.  And we are beyond desperate for change.  I'm so tired physically, and so tired of fielding people's questions and having to figure things out, see this is why Disney is still in business.  (Rescue and magic, and of course buying out all the great franchises like Star Wars and Muppets)  Don't get me wrong, I miss talking to people.  I'm just tired of our life.

A brain transplant is starting to sound pretty good actually.  I'm glad it's spring break, that's one less thing to deal with.  (school) And next week is my mom's spring break, so if it hits the fan with all this nerve blocking and med juggling, at least I won't have truant officers at the house.   I'm starting to feel a little bit like Bob in What About Bob, as I chant to myself, "I feel good, I feel great, I feel wonderful..."

Hey, did you know that melatonin is being used as a migraine preventative?  Neurologist number 4 now associated with my family is all kinds of cutting edge.  I really am [cautiously]hopeful.  And also taking melatonin.

Sunday, March 1, 2015

Just another school letter

M.________, Prinipal _________

Every year of Emily’s school life at __________, we have had nuts, peanuts and peanut butter in the classroom.  The worst and scariest incident happened when the teacher who had her for two years in a row handed out bags of trail mix (80% nuts) to everyone sitting around her, and then tried to hide it from me.  Emily could easily have gone to the hospital or just stopped breathing that day.  Emily is contact and airborne sensitive.  The more food we have in the classroom, the easier it is to forget.  Unless you have an allergic child, there is no possible way for you to understand.  All it takes is one parent to slip, and we have a problem.  Kinder through second grade, we have had a problem every single year without fail.

At the beginning of this year, I almost cried with joy when M. _______ announced at the welcome night for parents there would be no surprise birthday food or snacks in the classroom.  Imagine my confusion and fury when I come home to an email on Friday when SURPRISE BIRTHDAY FOOD had already taken place!  I am still trying to process the fact that there will be snacks in the class on Monday, something I only received warning about on Thursday.  That is already a short time-frame considering that Emily is my easy allergy kid, and our weekends are spent at farmers markets purchasing and processing food for her younger sister Sasha.  Sasha can only eat food from specific vendors are the farmers markets that are uncontaminated with corn products.  Her diet is extremely limited and her migraines are out of control at present, which is why she no longer attends kindergarten at _______.

Clearly, the no-food policy in M. _____’ classroom has changed, and I am extremely upset at having that sprung on me with absolutely no warning.  I’m thinking if you’re going to lie to a population in a classroom, lie to the ones who can already go to restaurant and eat at the drop of a hat, or to the ones who take vacations ever because they have safe sources of food and water.  Maybe don’t lie to the ones who have three different neurologists, who have to plan every move as if it were going overseas, even if it’s just running errands.  And if there is a change in food policy, for the love of god, give me warning so that for the 4th year in a row Emily isn’t excluded every damn week.  Food is already our enemy, please don’t make it the thoughtlessness of people too.

Emily's Mom