Monday, July 7, 2014

in a state of calm

So I finished IV treatments for this round last week. Whew!  Doozy.  It was A.W.F.U.L.  I'm dreading the next round.  But for now I'm in the eye of the storm.  I'm only on oral antibiotics and have 3 more days of them until I get about a week and a half off to let my body relax a bit and then a phone appointment with my doctor to re-hash this last 4 weeks and then re-group for the next 4 weeks which might be more intense than the last.  Oh boy am I afraid.  But I need to not start getting ahead of myself and need to stay in the present.  One foot in front of the other and enjoy the little joys of each day.  My kids do provide plenty of those!

We had a fun 4th of July.  I sat back the whole time while we had family over.  They did everything - prepare food, take care of kids, provide fun.  Still, it was taxing on my body.  I had fun, I stayed mostly immobile, and while I wasn't incapacitated by seizures or nausea, fatigue and weakness were there. You can see it in my eyes:
It's a disease that's hard to explain to some people because a lot of the time we don't LOOK sick.  We look like we probably feel okay.  Unless you're there in our most utter awful moments, we look like we could be you.  But I've reached a point where I do look pretty bad.  I walk slower, shuffling at times, and I am still having seizures.  The doctor upped my seizure meds last appointment but it hasn't seemed to slow them.  They haven't increased which is good, but they haven't decreased which is kind of disappointing. I have two kinds of seizures - one, the kind where I flail (the typical kind you'd see on tv or movies), and one where I pass out for up to 3 hours--that's my record--then groggily come out of it.  Matt has to monitor my breathing and make sure I'm fine, giving me seizure meds even though I'm completely "out" (he puts them under my tongue where they dissolve very easily and absorb and go to work).  It's scary, folks, but the doctors are aware and know fully what they are doing and are keeping close tabs on me so we don't feel alone in this.

Getting fanned by a fallen palm frond by my bro
It's not hard to be off of my feet. It used to be.  It used to be hard to sit and watch and wait and see things that needed to be done.  Now I sit and am SICK and can do nothing but BE sick.  My body won't let me be anything but sick and my mind won't let me be anything but sick.  My mind is focused only on helping my body not fail completely most days.

My kids are here at home with me, but are taken care of by others.  They come over to me for loves and hugs and to say "I love you, Mama" or "We prayed you would get better last night, Mama".  It's a tag-team effort.  Right now my cousin is in town and does so much of the daily work of caring for them and for the house (Matt does a lot of the house stuff too!).  Then on top of that, I have one sister-in-law coming on Mondays, my mom coming on Tuesdays and Wednesdays, my sister coming on Thursdays, and my other sister-in-law coming on Fridays.

There's something irresistible about a little boy
and a sparkler :)  Especially MY boy :)
I've had seizures when they've been here, I've also been awake and alert when they've been here and able to direct them as to how I'd like things done or where things put.  We've been slowly moving into a new place since our move across the country so it's been a transition!  A very slow one.  Imagine a regular move and then imagine one with someone who is very very gravely ill.  It takes more than double the time to get unpacked and put away because there are just so many hiccups along the path.  Things are coming together but it really is just taking a while.  My husband is a huge help and he is trying to make our home a place of peace for me and all of our family helpers have tried to do the same when they come over on their allotted days to help.

The 4th of July was fun, and even with all of the sitting back and resting, my body still paid dearly for all of the fun I had not doing anything much at all except observing and laughing and enjoying myself NOT exerting myself.
The fireworks display as seen from our house
The day following the 4th I had a big seizure.  I always wonder, "Was it worth it?"  It usually is.  Fun with family usually is worth it.  And to keep it real, so you know that I don't always look like you or you or you, this picture was taken after a seizure - I'm not excited to share it, but I think it's important that people see that Lyme causes awful things to happen.  This is what I look like after a seizure:

Over on the right-hand side there, you'll see a fundraising site that my brother and his wife and a friend from their church have put together for us.  We thank you so much!  We just are blown away by those of you who have given to us already and so grateful!

I'll leave with this:
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12