Saturday, March 8, 2014

exposed

Dirty closets.  Literally....

We are moving.  It happened SO fast.  Moving from the middle of America to the coast of America.  You know what that means?  It means moving from a BIG house to a little house.  So naturally, as I lay on the couch unable to even care for my own kids, my mind races thinking of all the things needed to be done before the movers come to pack up the place.  So much purging must be done!  I don't want to arrive at a smaller place and have to live in cramped quarters. I'd rather get rid of it now and breathe easier when we get there.
But it poses a problem because as I said, I can't even care for my own kids.  So how can I methodically go through my house and purge?

(Side note for those of you that don't know or don't remember - my mom has graciously moved in with us and is taking care of the kiddos for the majority of the time until my husband gets home from work each day and she also cares for me!  How grateful we are!)

There was a good day a week or two a go when my mom took all the kids out to the zoo and I decided to purge the toys.  That is something that can't be done with kids around.  I was running on adrenaline and once that was done I decided that I could conquer the girls' closets.  Which I did.  I paid for it dearly, though.  The next day I had a seizure, passed out for most of the day and it was just an all around bad, scary day.  My husband was scared and has been oh so careful with what he'll allow me to do since then.

So enter my bff.  She has been so faithful to pray for me and step in when things are needed.  She doesn't know anyone with Lyme disease but she sure knows how to care for someone who has it.  She just brings a meal at the right time, takes the kids at the right time, comes up with great ideas for how to help at the right time....it's been wonderful.  She's also a great encourager.  That's something every Lymie needs.  I gets notes all the time and encouraging sermons she's heard that she'll pass along, etc.

Well, she heard that I've been fretting and getting anxious about this whole purging thing.  So she set up a babysitter for her own little one and then came over to help me go through a couple of closets with me.  I honestly thought we'd only get through the linen closet and I was happy about that because the other closet to go through was in my room and my room is a mess.  And that closet had who knows WHAT stuffed in it.  I was scared to let her in.

But she KNEW what to do.  She set up a chair and made me sit.  I wanted to do more but she wouldn't let me.  She had me say what to keep and she put it in a pile and she had me say what to give away and she put it in a pile.  Then she folded all the "keeps" and put them neatly in the closet.  She MADE me just sit and watch and not lift a finger.  She knew my body would pay for it and she wouldn't let it happen on her watch.

Then she said she had time for one more task so we looked around and tackled another semi-big project and again she made me sit and bark orders while she did the heavy lifting (and it really was heavy lifting because it involved books!).

What a wonderful friend! I find it's so hard to make the kind of friend that you feel comfortable around enough to be sick around.  She's seen me have a seizure.  I seriously thought she wouldn't want to be my friend anymore after that.  I know it's ridiculous because no one is that shallow, right?  But I was super embarrassed. It's a vulnerable thing to have a seizure in front of someone.  But the next time I saw her she just brought it up and said something along the lines of "I'm praying for you and don't think anything is weird between us" or at least something that made me feel that way.  That's what you should go for.  I'm really going to miss her dearly.

We had a sleepover the other night because her husband was out of town and my husband felt comfortable letting me go hang out overnight there since she's so comfortable with Lyme.  There was no pressure to make it "fun".  We just sat, laughed at her little baby son's antics, sat some more, watched a really old Disney movie, and made decaf affagatos then went to bed.  She gave me HER bed.  The comfy one.  She took the guest bed.

She prefers OTHERS as more important than herself.  She lives out Scripture.  She's the kind of friend I hope to keep forever (we already are in cahoots to plan a way to see each other in December maybe).

Everybody needs this kind of local friend.  Especially a Lymie.
All of these pictures were taken when she and I went to the Dallas Arboretum; a trip where we had to cut a lot of fun things off because of how I was feeling.  But she was so kind and so loving and really understood!

Tuesday, February 4, 2014

industrious

I'm well enough to work with my hands.  That is a feat.  And I'm proud of it.  I'm selling these bracelets. If you or anyone you know of would be interested please pass along my shop info because all proceeds go to helping pay for my Lyme treatment.  Thanks!!

They really don't have to be birthstone if you don't want. You could fill them up with green stones and make them Lyme bracelets!!!! :)



Tuesday, January 14, 2014

guilty

There's this sense of guilt when asking for help.  You know?  Especially when you don't LOOK sick. But you have to get over it.  The pride for me is what gets in the way.  What will people think of me?  "She walked yesterday; why is she in a wheelchair today?"  "She went to that friend's house yesterday; why can't she come to mine today?" Fear of man, fear of what people will think.  Get.over.it.  I have to tell myself that all the time.  SO many people want to help.  Let.them.in.  I repeat that too.

Well, this is a half-tribute to my mom too.  I can't speak for her, but I can imagine how she might feel.  She came here to help me.  My mom - she already raised 4 kids and now she's here semi-raising my three. Sometimes I wonder if people are thinking, "Well, her mom is there to help, why would she still need help with chores or with the kids or with...."

Here's why - My mom works so so hard.  Anyone with kids will know that caring for kids is hard!  She gets them up, makes breakfast for each one, puts them in high chairs, wipes faces, drives one to therapy some days when I can't, then makes breakfast for ME, does the dishes - that's all before 8:30am, mind you - then it's interference time.

An almost 4 year old and an almost 2 year old need interference-running all the time.  And teaching.  We are teaching them to be kind, godly little ones.  We trust my mom with that.  We don't trust just anyone with that.  When I'm able, I do it, but when I'm not, she does.  And do you know how exhausting THAT can be?  Our almost-7-year-old needs godly input too.  She's not done learning.

Then it's lunch time.  Make lunches, high chairs, wiping of hands, etc.  All over again.  Picking up little girl from therapy.  Then it's bliss time - adult lunch while kids play upstairs where we can hear them and they watch a movie.  But my mom doesn't get to rest -- she has to make MY lunch, make sure I'm not about to have a seizure, etc.  Then it's nap time.  For EVERYONE.  Well, "room time" for the kid that doesn't nap.

By the end of nap, I can see my mom is getting tired.  Then....THEN, she works.  Did you know she works?  She gets to work from home thankfully.  But she has to work part-time.  I remember the days I worked from home and raised ONE little one.  I was exhausted all the time.  But my mom does it somehow with three kiddos who aren't even her own.

Matt makes dinner when he gets home and while my mom works, but if she can, she runs more interference during the "witching hour" at our house -- that hour and a half before dinner when every kid becomes a little Tasmanian devil.  At bedtime, she even will take a break from her work (that sometimes is not a good idea to break from) to help put the kids to bed so that she can help her son-in-law.  She is so sacrificial.

Somewhere in all that we manage to get laundry done. It helps to have two little who know how to put laundry AWAY.  But the washing and folding is still a one person job (unless I'm having a particularly good day and can just sit on the bed or couch and fold).
(Source)

So what does that leave?  It leaves housework (which gets done when it can by...you guessed it...my mom), lawn work (Matt is exhausted from work, making dinners, and worrying about me/caring for me at night), and general other house stuff.

There.  There is no guilt in it.  Help is needed and we've already seen it generously pouring in.  Thank you to those who have helped.  Thank you to those who have tangibly helped and encouragingly helped, and most of all, to those of you who are PRAYING.  We don't give up on praying.  Keep it up, please!

Time to rest.

Monday, January 13, 2014

sorry

I never wanted my kids to see me have a seizure.  My husband was always good about blocking me from view or calmly telling them to go play upstairs.  I still am not positive they HAVE seen me have a seizure, but I know the girls (who are both old enough to talk) both know something is up.

Last week my oldest daughter said, "So, if you have one more seizure we aren't going on vacation?"  I don't even think she knows what a seizure is, but she knew it might ruin our family vacation because she overheard Matt make that comment in a moment of desperation.  In private he said, "So when do we decide to cancel vacation?" as I lay there sweating and immobile after a particularly bad seizure only days away from departure.

It's hard to have kids and be "scary" sick.  Before, I could just lay there and smile when they came up to me.  Now I have to hide. Or at least that's how it feels.  I don't want them to see the weak, sickly mommy, plus, their noises can make me sicker!  So instead they just know I'm up in my turret hiding away and fun Grandma gets to care and play with them.  On good (or let's say "better") days, I use my oldest as a messenger sometimes.  She comes in to the room every once in a while and kisses my hand and lays her cheek on it affectionately like a dog might. (side-note -- can anyone please convince my husband that a dog's presence might help comfort and heal me *wink*).

I'll relay messages to her.  "Will you tell Grandma that I need a quick snack?"  She runs helpfully and joyfully.  I think she WANTS to help.  She's old enough to know that I desperately need to get better and she wants to help save the day.  "Will you tell Grandma that I need water and fast!"

She ran. A few minutes later my daughter was carefully walking into my room. Carefully because, in her hands (it required both), was a beer stein, heavy and brimming with water, threatening to spill over the edge.  "It was the only glass I could find."  I wondered why she didn't tell Grandma.  "I could do it. I wanted to get you water. Here it is"  She smiled so cheerfully and so satisfactorily.  There was even a straw in it.  It made me want to cry.  She sees Daddy put straws in glasses of water when I am having a seizure. It's the only way to get water in sometimes. 

I feel sorry for my kids a lot of the time.  I go in and out of knowing for certain that God has me in this place and KNEW my kids would have a mom like this.  There's no reason to feel sorry for them.  They don't even know any different and they are HAPPY kids.  They love life, and they are learning to love God.  They see us pray and trust and isn't that what we are here as parents to teach?  

But there are days that sometimes turn into weeks of feeling sorry that they have to see their momma like this.  Especially the younger ones who just want mom to come give them a pony ride.  "Are you SICK or are you just resting?"  my middle child asks a lot.  She thinks both are bad, but she hears those terms a lot.  Sick.  Resting.  "Don't close your eyes, Mom." She says that if I'm downstairs in their company.  Funny, because her older sister said the same thing at that age before I knew what was causing me to be bedridden.

I know I shouldn't feel bad.  I shouldn't feel sorry.  God did ordain this time and He made little minds to NOT comprehend the magnitude of an illness like this.  They can hear "sick" and "resting" and maybe have a bit of fear, but it's not the fear we adults have.  And I'm thankful for that.  And I need to keep reminding myself that my kids are blessed to be in this family.  Some day they will see that Mom and Dad never stopped trusting God throughout tough times.

And I need to always keep that picture of the overflowing beer stein in my head.  A joyful face.  My cup overfloweth.


Friday, January 10, 2014

deceitful

Not in the sense that I'm trying to lie.  But I will tell you what - so many...SO MANY people ask me or ask us "How are you doing?"  They know our situation.  They know I'm having seizures...on OFF weeks.  I'm not even killing bugs and my body is going haywire.  It's just so overloaded I can't detox enough.  My seizure meds are at doses through the roof.  And they are helping, but just not enough.  We are in constant communication with the doctors.
This might be how I look
 The deceit goes like this:

*"How are you guys doing?
"Well, we're not doing great.  We're scared." We're terrified!  We are at a breaking point.  Heather cries often so ready to give up.  She begs to go home - to her heavenly home.  That scares Matt.  He wants to take her pain away.  He wants to take her place. He wants to be able to fix her.

*"How are you feeling?"
"I'm not having the greatest of days today" I'm suffering; so much that you wouldn't be able to grasp it.  I'm in pain/I need encouragement.  I can't think straight and my mind is foggy so I'm sorry if I have repeated things or said things that offended you.  Hurting you is the farthest thing from my heart.  Alienating you is too, that is what I answer simply.  I WANT to hold on to my friends!
But this is how I feel


*"How can we help?/Is there anything we can do to help?"
"Well, it's hard to think of something now, but we'll let you know." Oh how we'd love a meal but we have allergies and have to be so careful.  If you understand gluten-free then yes, but how can we just ask you that.  Most people do not understand gluten free cooking and Heather will get very sick if she has even a little gluten.  
Heather would love to get out of the house sometimes but can't drive a lot of the time.  But that can be hard to schedule because each morning/day is different for her.  Matt would love to get out and spend time with a guy friend.  Heather would love someone to take her to run a few errands she can't just send Matt or her mom on.  Heather's mom would love a break taking care of the kids but Olivia has some special needs.  You have to follow a schedule.  Not hard, but how do we just tell you these things when you have family of your own?  These requests and needs are not ones that would be easy to ask of just any friend.

"How can we pray for you?"
"You can pray that Heather will be encouraged daily by the Word even when she can't read.  That she will be encouraged by friends and not feel alone.  That Matt will be encouraged by the Word and know how to encourage Heather best.  You can pray that the kids will not be afraid or scared.  They sense something is wrong and notice that mommy is in her bedroom all day.  You can pray that Heather won't be lonely.  You can pray that tangible encouragement will bless her from all angles. You can pray for Heather's mom that she will have the stamina to keep up with caring for the kids.   You can pray for Heather's Dad as he is separated from her mom that they will be able to connect though apart and that God would provide a way for her Dad to come visit more often to see his wife."  There is no deceit there.

Wednesday, December 25, 2013

confused

So, my friends.  The last few months have been scary for me.  This last week was even scarier.  I had two HUGE seizures which resulted in me feeling 'paralyzed' or 'trapped' in my own body.  I forgot the names of my kids and cried so hard about it that I don't think anyone (my husband included and he was with me) had ever heard me sob that hard.  I had trouble forming words for two days after and was in bed all day.

We were advised to skip antibiotics for two days and to up some seizure meds.  Then resume antibiotics.  And when we did, another big one hit.  This time I passed out for a good amount of time and my husband says he tried to revive me to no avail for so long.  Thankfully my breathing remained calm the entire time.

I woke up this morning, Christmas morning, seizing.  I was dreaming I was having a seizure and then I was awoken by my husband who looked worried and was shaking me and saying, "Are you okay?".  He put some seizure medicine in my mouth and waited it out with me making sure my breathing was fine.  Thankfully it was mild and I was recovered enough to come enjoy our simple family Christmas morning.

But even being down JUST among my kids all day made me so weak and I nearly had another seizure right before dinner.

Things are so precarious right now.  We are confused.  We know we are in good hands with our doctor and trust the team.  They know what they are dealing with and have so much experience.  So we don't doubt them.  We're just scared.  This Lyme thing has so many ups and downs as we've experienced, but it's just so much more frustrating to be doing THIS bad (wheelchair bound if we go out), after having a taste of nearly normal-ness last year as we met our future son.

But despite our fear, disappointment, discouragement, we haven't given up on God.  We still know this is part of His plan for our lives.  We don't know why.  I so often cry out to Him wondering WHY I feel so miserable and WHY couldn't He just at least take the pain away.  But it must all be for His glory.  So I endure and continue to praise Him in the storm.  Because that is what He deserves, and that is what He tells me to do in His Word.

Pray for us.  Pray that my team of doctors will find just the right combination of drugs to get my seizures under control so they can find just the right dose of antibiotics to kill Lyme and the co-infections so that my body will HEAL.

Thanks, friends.

Monday, November 25, 2013

icked

My, oh, my.  This business of trying to outsmart and kill Lyme & Co. is really getting difficult.  It's always been difficult, got easier, hit some bumps, scaled some mountains, walked through valleys, and now back to climbing a steep cliff it seems.

I've begun a "bio-film" protocol.  Basically all the various bacteria that stinker of a tick injected me with have all been spending 3 years of treatment going into defense.  Some are killed, some have time to create great defense mechanisms - cysts and hiding in seemingly impenetrable bio-film.  We ALL have bio-film.  Our mouths are teeming with them.  This is why Listerine is used and can claim to be antibacterial -- it contains bio-film busters.

Anyhow, recently it was discovered that xylitol (that stuff that is in a lot of chewing gums lately) is a fantastic bio-film buster.  Mixed with lactoferrin, it's a dynamic duo - breaking the bio-film and drawing the dead and living toxins out of the bio-film.

Well, knowing that I've been driving the little buggers into bio film for 3 years, that could mean there's a lot up there to be released.  So I'm on a BUNCH of various antibiotics to be ready for whatever comes charging out.

And boy has the charging begun.  My body is confused.  It's taking attacks on all fronts and while that is good news because it means that the bio-film is being busted up, therefore letting the antibiotics do its work, it means I feel so so awful.

Once I get a hold of one symptom, another pops up....pummel after pummel...and no coming up for air.  I do want to get rid of this disease as fast as possible, but after months and months and years, I would love a break!!!

I'm so ill that I'm constantly in need of the pep talks to keep me going and I'm more and more turning to the Bible and God's promises for encouragement.

On the children's war front - Looks like my oldest might just be ready for maintenance meds.  Yay!!  She is pretty much symptom free and we'll see what they say at her doctor's appointment on Monday.

My littlest girl is still struggling but with some A.B.A therapy on top of her antibiotic protocols, she IS improving.  Such a relief.

Keep us all in your prayers!!