Monday, June 16, 2014

Chemo

Having talked to my dad when he was going through Chemotherapy and Radiation, it's about all I can compare this to.  When you're too tired to chew food, constant nausea, hair and weight loss, the inability to write in complete sentences... Well, my dad's hair loss was natural. (;  And while Chemo and Radiation tend to not be permanent one way or another, here I am at an impasse.  It could be worse.  I'm sure this is a sensitive subject for many, and I would only compare chronic daily migraine to chemo and radiation on the authority of being at my father's side as he ascended into glorious splendor.  I got to be his nurse for a few weeks, administering meds through his pic line, and then chasing my brother and sister about the house with the leftover saline, having water fights.  Hahaha, we managed to have quite a bit of fun during that time, and we manage to have quite a bit of fun now, despite the fact that I literally took a nap that went from immediately after I got up this morning, until about 3 this afternoon, with only a couple of water/food breaks.

People have been asking lately what happened, since I have not always been in such a state.  True dat.  There was a time in recent memory when I was more or less functional at only 8-9 rescue med days per month.  I went to the store, played on the worship team, hosted bible study, even attended school functions!  We still didn't do playdates or birthday parties, but come on, with food allergies and chronic migraine, we were still by no means normal.  And for all the managing of everyone's everything, it seems like an absolutely unattainable goal to get back there, where we kicked so much @$$.  Psht, I even occasionally got paid for my degree and led worship at a church on the side, can you imagine!?!  But two things happened, my migraine days shot up almost immediately, and only this past week has there MAYBE been any sign of improvement.

First, my insurance changed carriers and in the ensuing fight, I was off Botox for migraine for an entire calendar year.  May '13 to May '14.  Second, I got the great infection of December '13.  Before December I was averaging about 13 rescue med days a month since the Botox wore off in August.  Since December that number went up to 18.5.  None of this has made me want to cry until now.  Whew.  That's a shitty number.  That's chronic daily migraine.  All of a sudden, sleeping most of the day and STILL accomplishing some child rearing and laundry and vacuuming seems pretty kickass.  And now I'm even more upset that I let the girl's stupid Aunt on their dad's side walk in here, be extremely unhelpful, and cause me to have two days of rescue meds and one day of dysfunction after I had managed to go 5 days in a row sans rescue meds. DEEP FREAKING BREATHS Grace and boundaries. graceandboundariesgraceandboundariesgraceandboundariesandneveragain.  And never a-freaking-gain.

I understand that it's hard to understand.  Most people (thank GOD) will never have chronic daily migraine.  And most people will never understand if I tell them that it's like having chemo and radiation for 15 years.  It's just hard to balance, speaking the truth in love, while protecting myself and my family.  Ignorance is rampant, and most people truly mean well.  Well anyway, things are looking up.  Going 5 days in a row sans rescue meds combined with the fact that mom is on summer break means that I will probably not run out of rescue meds this month!  And with the great lesson I just learned about boundaries, I really do feel better equipped for the rest of the summer.  It also probably means we can kiss the family reunion goodbye, which is a huge relief as we have yet to have one where someone doesn't accidentally bring nuts anyway.  I am going to get better dammit!

Oh, and so is Sasha.  She's got a neurologist appointment tomorrow, which is great because she's been nothing but a mess.  I think she might have benign paroxysmal vertigo, but don't quote me on that.  Unless I turn out to be right.  It would explain why she's so flippy, why she has always fallen down so much, her eye movements etc.  I think it may have been hiding beneath the allergies and the migraine history.  Sneaky bastard, I would too.  Or she could just be a little weirdo with migraines and allergies.  Mainly, I need her to get better.  No, seriously.

Sometimes I wonder how in hell we have made it this far?  Or how in the hell we are going to make it any farther?  Knowing lots of wonderful people helps.  Wonderful people with great senses of humor is fantastic.  I think the best thing right now is being able to rest in the fact that I can make mistakes, and the best of the best will still love me, or at least chalk it up to my meds. (; I hope someday to be able to endure other people's mistakes again.  Maybe someday the stakes won't be so high.

From the center, ( http://kottke.org/13/08/the-kvetching-order )
charli

2 comments:

  1. Wow Charli! Here I am wallowing in my self pity thinking I can't handle anymore Dr's appts or infections or cranky babies. With all of the issues that Brooklyn has had to endure i feel lost and hopeless and worried she will have lasting effects from all the meds. When I have to explain all the is going on with her I feel as though people look at me like "this mother is telling one hell of a story" I wish it were some kind of story. One week its this is wrong then next week it is something else. Meanwhile, trying to handle it all on my own while my hubby works out of state and all of my friends and family are in a totally different state. I don't know how you have endured it all. I ready your posts and you are my hero. Despite all that is going on with you and the girls you still seem to have that wonderful "Charli" attitude that I love so much! I hope that one day things will be better for us. I pray that one day our girls are healthy and no longer hurting. Keep your chin up girl and remember your boundaries are your safe haven. Stand tall and stand firm in what you believe is right for your family. XOXO Heather Feather

    PS I miss PT

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    1. Thanks for the encouragement woman!! I agree and pray that our girls get all better quick! You hang in too. It's tough business out there, but I know you can do it. Everyone says we'll look back and long for these times when the kids were little. I just hope we have any brain cells left by then! <3

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