trapped

As many Lymies feel at one point or another, I feel trapped in my body.  I WANT to get up and help with dishes.  I WANT to bend down and pick up my 9 month old.  I WANT to hold and hug my 3 year old.  But I can't.  There are moments where I want to move that I just plain can't muster the energy to move!  Trapped.

Another time I feel trapped is when I have a "seizure" (I say this loosely because I really don't know what type of seizure I'm having and all I know is that it's Lyme related).  A relative recently asked me to describe the whole "happening" of a recent seizure (I haven't had one like this since the summer...I think the stress of traveling and the holidays overloaded my system and caused a meltdown this time).

Here's how I described it to her:


Well normally my tremors are just on my right side.  My right arm and shoulder really. And if it gets really bad then my head will jerk too.  But that is a once or twice occurrence each week so we don't worry about it.  But the "seizure" thing that happened the other night hasn't happened since the summer, and that is different.  


I could FEEL one was going to come.  Matt was going to put Georgie to bed and before he left, my LEFT hand did a weird thing.  My left side never does anything weird so it confused me.  I had JUST put my antibiotics in my mouth and swallowed them, but they can't kill stuff THAT fast to cause a seizure so we think the seizure was just because of a nervous system overload.  

My left pinky curled up in a grotesque position and just stayed there and my left arm jerked and then my right arm.  So Matt said, "Are you okay?" and I said I thought I was but I was getting this weird "feeling" I get before a big episode.  But it had been so long since I had had a "big one" so I thought maybe I could control it.

So he left the room.  I was sitting on the couch but no one was really "watching" me.  But they could have seen me if they had glanced over from other parts of the room but they were all occupied with dishes and such.

My arms jerked again and then started jerking pretty regularly along with my right leg so I got anxious and I felt like there was an elephant on my chest and my left arm was tingly down to my fingers and weird pains were in my right arm and legs.  So I knew it was going to get bad.  But I didn't have the energy to raise my voice for someone to get Matt.  I figured someone would look over and say, "Are you okay" because I was jerking.  But it just so happened I wasn't as visible to the people in the room as I thought.

THEN it escalated. My heart started beating SOOOOOOOOOO fast and I got SO scared that I couldn't speak and I had a lump in my throat and wanted to cry and yell for help.  And I was jerking REALLY bad.  Both arms and my head.  Finally after like 5 minutes of this Matt walked in and I looked at him and he said, "Do you need your medicine?" worriedly and I burst into tears which is something that happens with each HUGE seizure for some reason.  It's so weird.  It happens every time. I can't talk but I can cry.

So he ran to the other room to get the seizure medicine and then over to me and shoved it in my mouth and just tried to calm me down because that's what you're supposed to do.  But then it takes time for the med to work.  So he just kept saying, "Breathe" and "calm down" but I was hyperventilating and convulsing and jerking uncontrollably.  It was hard to catch my breath and my chest felt heavy. 

I think I convulsed for 20 minutes but for the last 10 I was able to breathe better. So it was just a matter of calming down and waiting for the jerking to stop.  The WHOLE time my eyes were closed and I just WISHED to pass out. It's a weird feeling. You want to pass out so badly and feel like you could at any moment but it never happens.

When the worst was over, all that happened were a few jerks every few seconds and my right leg would shudder violently every minute or so.  So strange.  Matt just stayed there rubbing my hands and stuff and telling me to calm down. I could finally talk but not well, sort of slurry, and I asked for a cold compress on my head. 

When it was over I was so weak I couldn't move.  I just lay there pale and completely still.  Matt offered to move me to bed but I was so afraid to move because I still felt "weird".  So I lay there for 30 minutes stone cold before we finally moved to bed.

Thankful for a God who knows and formed my body and has created it to help me fight this disease.  No matter how trapped I feel, I know that my Creator knows how I feel and is here to give me peace amid anxious moments.

restful

"Contentment is a disposition of mind in which we rest satisfied with the will of God respecting our temporal affairs without hard thoughts or hard speeches concerning His allotments and without any sinful desire for a change. It submissively receives what is given. It thankfully enjoys present mercies. It leaves the future in the hands of unerring wisdom." (Plumer) 

ill

I am so very ill.  We're not sure why.  I mean, we know why (Lyme), but I haven't been this incapacitated for a long while.  I am needing help walking from room to room whereas before I could usually  make it between rooms by myself except for maybe on really bad days.  This is EVERY day so far.  I've taken a few falls and in general I just feel awful all over - inside and out.  It's so hard to feel this way!!!  We are hoping I'll be strong enough to travel in a week or so when we make the move to Texas.  So please pray my strength will increase even just a little over the next week!  We know God is sovereign over our time here and our travels and that He cares for us, so whatever He has for us in the next week or two we will do!


I fell in the shower the other day.  Then after the shower/getting dressed process I couldn't even walk by myself.  I just sat in the hall waiting for someone to see me because I didn't really have the energy to call out.  Then when I got help to walk just a few feet I was shaking the whole time.


And all this and I wasn't even on antibiotics that week!  So frustrating.  It must have been traveling.  And now I'm on antibiotics again and gearing up to travel/move into our new home state and search for a house.


In the top 5 stressors of life are:
Moving
Traveling
Kids


BAM, BAM, BAM


Please, please pray I can regain some strength before moving on to our next destination.

like a deflated balloon

Made it through traveling.  Thankfully the plane ride was only 2 and some hours.  Little Livie was pretty good.  She only fussed as we were about to land.  Mainly she was a wiggly worm the whole time so that took up what energy I really didn't have.

First time I traveled in a wheelchair and I gotta say, it is THE way to travel!  You get to the first of the security line and get on the plane first....I suppose there is ONE perk I can think of to this crud of a situation of Lyme that I'm in :)

Too weary to write more.  Just wanted to update.

Blue

It's a hard life. That saying has been in our family for a while.  Even our 3 1/2 year old will say it.  She'll be crying about who knows what and you'll ask, "what's wrong?" and the answer is sometimes, "It's just a hard wife."  It usually means you're down or that life is hard right now.

Well, it is hard right now for us.  We have to say goodbye to Washington.  Oh how we loved it up here.  We got used to the weather, learned it was improper etiquette to use an umbrella even though it was raining, learned there's a coffee shop or kiosk on every corner (and also incidentally learned much about what truly makes a good cup of coffee), and so much more.

But what truly makes it hard to leave is leaving our wonderful church family.  You might not know if you haven't lived more than one place before, but it is HARD to find a "good" church.  And by good I mean, one that preaches the truth accurately.  An added bonus would be a good kids program/nursery.  And another added bonus would be friendly faces who welcome you on your first day and then become good friends to the day you have to leave.  We found ALL of those in our church up here.  I just was blown away by the love and concern that was given to us in those first few weeks we were living here by people who only had the commonality of the love of God to share with us at first.  I was pregnant with Georgie and ran into those kidney stones, and then health problems right away after her birth, etc.  They have always volunteered to help us in ways we most need, even without us asking.

And of course there were some families we grew even closer to and it is just SO hard saying goodbye.  I'm glad I have good things to look forward to in the next few days/weeks because if we were leaving to our final destination many states away today, I would be bawling my eyes out.  We have such good friends up here both in the Army and from church and it will be really hard to leave knowing we might not see them again.

On the other hand, I am so thankful we have modern technology.  Facebook, blogs, even Skype to keep up with people.  

Here's how you can pray for us in the next days as we get to go visit family before finally ending up at our new home:

-Livie and I are going to fly to Los Angeles tomorrow at around 1pm.  Please, please pray that Olivia will be an angel of a baby for me.  It's hard enough on my body to fly and travel, JUST after "moving" (getting packed and stuff), so any antics from the little munch will really wear me down.  Pray that my body won't freak out on me (like having seizures, etc) while traveling.  Thankfully it's a short flight and I'll have the wheelchair for airport to-and-from's.

-Pray for Matt as he still has business to finish up here before he can leave, AS WELL as, cleaning our empty apartment before he can leave.  I had no energy to do this.  So it's left to him.  

-Pray for Matt he hopefully begins his journey via car down to Los Angeles on Saturday morning.  Safe travels!

-Be praying that right now God would prepare a church and people in the church to be compassionate on us and be led to serve us as we are ailing as a family and need help in the next year.

We are trusting Him and have seen Him bring so many good things into our lives and work out all the details according to His plan so what should we worry!?

Looking forward to being reunited with my little Georgie tomorrow! :)

F A T I G U E D

It's funny (depending on how you look at it), one of the worst things to hear sometimes for someone who is chronically ill is "You look so good!" or "You're looking great!" because, when people say that to me or comment about a picture of me, I can remember exactly what I was feeling in that picture or at that moment and most times it wasn't my best day.  It's awful to suffer from a disease that makes you feel so terribly awful and yet doesn't necessarily make you LOOK sick.

I know all of those people who say I look good mean well.  And really, what else would I want them to say?  I look bad?  Oh THANK you for telling me!  That's just how I feel!  No. I guess what I'd like to hear is, "I know you're still suffering and must be feeling awful, but you are still looking good." or something like that.  I know it's unfair to expect that because honestly, I rarely post pictures of myself without makeup, in sweats, and feeling sickly on the couch (which is most days).  I post pictures when I do look good. So I shouldn't complain.  Chronic illness is hard to understand unless you've gone through it. *sigh* I really shouldn't complain.  Hearing a compliment is a nice thing.....even when you're sick :)

The picture here is from this weekend.  I was just coming off of a "good" week (no antibiotics).  We had been invited to a murder mystery party.  Fun.  1940's theme.    It was a lot of fun but I wasn't feeling great.  I was feeling better than I do while I'm on antibiotics, and no, I didn't need the wheelchair, but in all reality I was feeling pretty bad.

Thankfully, though, even while feeling bad, I was able to enjoy myself.  The party was fun and I'm glad I decided to go.

This time without our oldest daughter (who is out of state with Grandma and Grandpa) gone has indeed proven to give me more rest.  It doesn't make me feel better physically but I am able to rest more and the stress on my system has been lightened.  We are seeing more and more that it was the right decision to send her.  And soon I will see her!  Counting down the days :)  She is having fun with her loving grandparents and aunts and uncles and cousins.  We Skype every night.  Love it.

I had an appointment with my doctor.  He said I am making progress, but as many of you know, killing this complicated disease is a LONG process.  He wanted to start me on Babesia treatment (a co-infection of Lyme) but because we are about to travel/move out of state in the next couple of weeks, he doesn't want to shock my system with something new.  So I will stick with the treatment I've been on (same drugs, same timing - 2 weeks on, 1 week off).  Means I'll have an "off" week the week of Christmas!!  :)

Speaking of the holidays,  I have a question for you all.  It might just add some cheer to your day if you're suffering like am.

What was the most memorable (good or bad) holiday you had and why?


I'll tell you mine in the comments.  :)