what you are dealt

so. it's funny. the previous post. i talked about the look. the look my daughter gives. huh. funny. interesting. i want to claw my own eyes out and stop the terms and phrases that have come into my life in the last 10 days. neurology. tourettes. tics. ocd. adhd tendencies. iep. 504. therapy. crossover behaviors. yeah. that look? wasn't just a cute little characteristic of our make-up. nope. it was so much more. and i can't. stop. crying.

when kennedy was three. there was a blink. and i joked. "honey, look, maybe she'll start swearing! she has tourettes!" then there was a cough. "kennedy, get a drink of water!" then there was a sniff. "kennedy! GO BLOW YOUR NOSE!" then there was a blink and rub of the nose. i never paid this any mind, because they all went away. then recently, she puffed her cheeks. then she stuck out her tongue. then there was a spit bubble. then came this eyebrow thing two weeks ago, and a severe roll back of the eyes into the head, with some twitching back and forth to the sides, which my husband actually noticed. "call the pediatrician." he said. and i did. and we've had a visit to the opthamologist. and a neurologist. and a diagnosis. Tourettes Syndrome. though slight. it's still a label. a label to my perfect little angel baby. who is really struggling right now.

she's frustrated. because this tic is a strong one. and it's giving her headaches. and it bothers her. it's embarrassing to her. and she thinks she's going to get in trouble for it. because it DOES look like a dirty look. and kids HATE her dirty looks. but we are getting her help and talking about it does help her. but boy do the angry spells hurt. wow.

and while i catch my breath with that news... i am battling my own issues. i have been fighting a migraine for exactly 30 days now. it started while i was out of town on business. i was in a meeting and speaking with some associates, and i started slurring my speech. then that night at dinner, i spilled my wine. BEFORE i drank it. i felt very uncoordinated and pretty clumsy at dinner and kept it to myself. i only had one glass of wine. i got a roaring headache that night. and the speech was weird the next day. and a headache again the day after. and the day after and so on.

i didn't tell anyone. i didn't think much of it. it finally lasted long enough, and the speech got worse and more embarrassing. i caved and called the doc. after many attempts to break the cycle, the doc tried and IV infusion and it failed, she felt it was more than a migraine and sent me for an MRI. i went through this migraine business one year ago exactly. one year ago, an MRI showed one white lesion on my brain. last week, they found several.

due to this, they sent me for a spinal tap to rule out MS. i have many other symptoms leading up to MS, as well. i will not be surprised if this is the answer. i just want SOME answer so i can move forward and get relief. my entire body is in pain in addition to now living with a constant headache. i am having trouble with my speech, i am having cognitive issues, trouble with my hands, and now my legs are beginning to get rubbery from time to time! i drop things all the time, spill things, even my skin is itchy! it's just plain annoying... my point?

you are not given more than you can deal? hmmmm. i just don't get that yet. i know i will. eventually. i always do get it. and i always DO get the message. i just don't see it now. i don't understand why i'm dealt this two huge blows. right now. at the same time to navigate. one year ago, they told me i had fibromyalgia and i told them no, i don't believe you and i won't take the treatment for it. i have denied it the whole time. i've always felt there was more to it. we shall see...

i'm ready to take what i'm dealt and fight it. head on.i just wish it would hurry up. because i'm tired and i can't get any rest not knowing. i don't write for pity, i'm sorrys or anything like that. just to share because maybe someone else is walking the same battle... or was just wondering what's going on...know it gets better... i've still got my humor and wit... that never subsides!

stay tuned....

peace and be good.


Jennifer Matott (Sigmagirl) said...

My beautiful friend... I am constantly amazed in your realistic outlook, your ability to see good in a bad situation. Be strong! Know that I am thinking of you and wishing for strength !

Katrina said...

Sweet, sweet friend. I don't know what to say. I sometimes can't stand that "you only get what you can handle" message - and it's okay to say ENOUGH! Hoping that you get answers soon. Keeping you in my thoughts with much love.

Melonie said...

Oh my sweet Shell...I have no words to make things better. Just know I am thinking of you and Kennedy. (((HUGS)))