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.

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!!

albuterol'd

Before this whole Lyme thing started, I didn't struggle with allergies or asthma.  The only issues I had with my lungs came whenever I caught a cold -- it would become bronchitis and I would end up not being able to breathe very well.  But it wasn't severe.

After and now during treatment, though, I'll find that things really set me off!  I've even had herx episodes that involved my lungs -- I wasn't sick at all but I started having trouble breathing, you could hear the rattle in my chest, and I have a standing prescription for an inhaler.

It used to be that chemicals and perfumes and candles would cause me to get a little "phlegmy" and then it turned into it making me completely bed-ridden for at least a few days (just SMELLING these things!).  That went away as treatment progressed!  Isn't that cool?  Slowly, I could add certain candles to our house, I can wear perfume, and only CERTAIN things make me feel a bit like allergies.

Well, the other day, I was taking apart a piano bench....a very old piano bench.  It needed re-upholstering (sometimes I feel like I need re-upholstering!) and my mom said if I took the bench apart she would tackle the hard stuff.  As I took off layer upon layer of old wood and leather, I could SMELL 1939.  Finally I was down to the "stuffing" that pads a piano bench.  I pulled up trying to wrench it from its position.  I pulled harder and it came out with a jerk along with a "poof" of dust.  Like you see in cartoons....a brown poof cloud.  I KNEW right then and there that I would probably have an asthma attack.

The finished bench

It didn't happen instantly, but within 15 minutes my eyes were itching, my throat was tight and my lungs were rattly.  And not only that, but it made me even more fatigued than I already was.  Not being able to breathe to your full potential really puts you out of commission!  We're on day 3 now and I finally feel like possibly tomorrow I'll be back to my "normal" (which isn't pleasant, but it's more pleasant than lung trouble on top of it).

A lot of down time gets me thinking.  When I'm in a lot of physical pain and a lot of fatigue, I can hardly concentrate reading, so there isn't much for me to do BUT sit and think and pray best I can.  I think a lot about "dreams".  The kind you have when you are in high school and college - when you dream of what your life will look like some day.  You know, the white-picket-fence kind of dreams.

My life now certainly looks completely different than I expected it to look way back then.  It has made me sad in the past when I dream of what my life WOULD look like if I was well.  But in most situations where I get sad about circumstances, I try to think on TRUE things....anything true my heart can anchor to.  And this time I got to thinking about what has happened -- my "dreams" have been taken over by God's story.  Which is what it really was all along - HIS story.  He's the author, craftsman of this work, and I'm His beloved daughter.  He cares deeply and because I know His unfailing character, I can trust that this story He is writing for me is where I am to be.

Right now, He doesn't want me to have homemade snacks ready at the end of the school day.  He doesn't want me to have the clean house I always thought I'd have mastered.  He doesn't want me right now to spend lots of time pouring into each of my children to the degree I thought I might do at this juncture in life.

It can feel like a loss of a dream when you come to accept a diagnosis of a long-standing illness.  You feel a lot like you're "losing out" on stuff.  I don't have energy to take my kids to story time at the library with all the other moms and their kids.  I don't have energy for mom nights with margaritas and movies. I feel like I'm in my own personal bubble of survival mode almost constantly.

"For the waters have come up to my neck. I sink in the deep mire, where there is no foothold; I have come into the deep waters, and the flood sweeps over me. I am weary with my crying out; my throat is parched.  My eyes grow dim with waiting for my God." Psalm 69:1-3

I don't struggle too often with comparing myself to other moms in the way most healthy moms do.  I'm so past the point of even being able to compare myself with a healthy person, that it really isn't something that I struggle with on a constant basis.  And anyway - my view is that each of us are so different, and your way of parenting is great for YOU and your kids and my way of parenting is great for ME and my kids and let's stop comparing and just raise our families the best we can.

What I do struggle with is comparing myself NOW with the made up me I had in my mind when I first began dreaming as a healthy person.  Chronic illness makes us think we lose our dreams - even down to the day-to-day of how we expect or "dream" our day to go.  Our society so often measures our lives by what we accomplish and chronic illness can really make you sense a loss of accomplishment just by the simple fact that our bodies can't accomplish much outside of the healing that is constantly going on inside against the disease.

But when I'm most discouraged I try to remind myself what I reminded myself when I was pregnant.  Like pregnancy - where your body is doing so much work to create life that you're "entitled" to rest more, etc. - when we fight chronic illness, our bodies are accomplishing much!  You can feel that a lot is going on in there and how neat that God created our bodies to FIGHT and to survive.  When I feel like I'm not getting anything off my "list" accomplished because my frail body can't hardly do more than lift food to my mouth, I try to remember - the list can wait - my body is working hard!

And you know what else? God's larger story can become our new "dream".  When you think about this, dwell on it, and pray about it. You will start to see God's story in your current circumstances.

"When the humble see it they will be glad; you who seek God, let your hearts revive.  For the LORD hears the needy and does not despise his own people who are prisoners." Psalm 69:32-33

Be a participant in what God has for you.  You will not be disappointed because He has what He has deemed BEST for us in our present circumstances.

"Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen." Ephesians 3:30-21

Now I'm gonna go take another puff of albuterol and replace my body on the bed and dwell on God's promises and His character and ask for contentedness.  It really is a much better use of time than wallowing. For reals. :)

spent

Let it be...

It is SO hard to be sick....and for so long with so many twisty turns and dips and peaks.  It can be so tempting to try hard to look for "meaning" in our circumstances or for a reason WHY we must suffer, or wait for something we think is the "normal" ending for what we are going through (ie: healing).

But I've found that sometimes looking for this "meaning" can be utterly exhausting.  We want so badly to know the value of our suffering because maybe that would help us appreciate it better while we are going through it; we want to see how it is being used for some sort of good since we're always entrenched in so much "bad".  You know what, though?  We aren't promised those kinds of answers or validation.  Sometimes we get them, more often we get them after the fact, and I would wager that most times, we just don't find out at all the full story of how God uses our suffering for His greater good.  His purposes in His kingdom for our lives are not usually known to us right now, and we feel this especially when our circumstances are not to our liking.  He has a heavenly plan being played out and His purposes are eternal and huge and when we can't see them, we tend to doubt.  But we must trust that His plans are secure.

Because if God is who He says He is, then He can be trusted during the times we are not given answers to our "why" questions.  He DOES use our suffering for His glory and has put us in this position for a reason.  He wouldn't have us here if He wanted us out of it.  And if we widen our lens surrounding our present place, there are just so many ways that God could be using us without us even knowing.

I often think of Hannah in I Samuel; how she waited and how she wept in waiting at times. I am her but with different details. The Lord eventually blessed her with the details she so longed and prayed for (children) and I wonder if she ever did know just how much her situation effected history. I don't know that she got to see wider meaning in her suffering, but she did endure - yes there were tears, but there was endurance and trust and she was blessed.

Will I ever know in my lifetime, the reason for my pain and suffering? I really don't know. But I do trust God and I know He'll carry me through and I know that no amount of fighting or whining will move me out of my present circumstances.  God wants to give us His best; the scary thing to us sometimes is just what that best may be.

One thing I try to do in my most desperate moments of self-pity and questioning is look for God's "graces" - where He has shown grace in my life or in my circumstances ....even in a small moment of my day.  You can always find them if you look for them.  It can take your mind off of the "why me" part and back on to the glory of God. We should want HIM to be greater and more glorious in our own view and in how others perceive Him through how we deal with suffering.

Another wonderful thing to practice is to look away from the chiseling that God is doing in our own life and look to the life of others who are suffering and being "chiseled on" and need encouragement, prayer, or just a shoulder to cry on.  Many times in my own sickness, I have no energy to entertain a guest with even the best of intentions to come help me or encourage me.  The best friends and family I have will come and sometimes just sit knowing I don't have energy to talk.  And yet, their company keeps me encouraged.

On the other hand, if I am the one wanting to encourage but do not have the energy or physical capability to go tangibly help someone, I offer my prayers for them and let them know.  I have even prayed over the phone with friends before and you just don't know how much that can bring encouragement.  Even a simple texted or emailed prayer to a friend can bring a glimmer of joy to an otherwise discouraging day.

Remind yourself that you are a vessel. View yourself as a vessel; a vessel is filled.  You don't know all that God is doing through you or what God is doing IN you.  James 1:3 "....the testing of your faith produces perseverance."  But you can know for certain that God is teaching you to persevere and that He's there with you each step of the way HELPING you endure.

It's interesting that over the course of a few weeks that I've been able to work on this post, that now, when I am finally finishing it up, our sermon at church yesterday was on "The Will of God".   There were many very prescient points that seemed to agree with what I had been working on here.  One of the concepts that helped me a lot was a very simple "things we can do right now".  In the moments when I want to ask "why" instead of pressing on or "doing the next thing", it helps to have a plan right there in front of you and to know for certain these are things God wants me to be doing.  If you are going to do anything, at least do these two things:

1) Pray and give thanks. "Rejoice always, pray continually, give thanks in all circumstances; for this is God's will for you in Christ Jesus." - I Thessalonians 5:16

2) Delight in Him and His word. "but whose delight is in the law of the LORD, and who meditates on His law day and night.  That person is like a tree planted by streams of water, which yields its fruits in season and whose leaf does not wither - whatever they do prosper."  Psalm 1:2-3

We must take our mind off of SELF and turn our thoughts to Christ and the Word of God.  In doing so, we allow God to chip away at our sins and make us bright, shining jewels for His glory. Decide to say, "How can I know God more?"  We will be blessed if we turn our focus on THAT rather than the all-consuming "whys" of our despair.  Think - "God has sovereignly put me where I am right now at this moment in history.  God has given me a role here on earth that no one else can fill (I think of the story of Esther here)."  We have been called to this earthly kingdom "for such a time as this" - we can be used to further God's heavenly kingdom through our suffering right now and while doing so, we can know that whether we know why NOW or whether we know why in eternity, that God is indeed using us as individuals. Be encouraged!!

And I don't know about you, but whether or not God has chosen in my life here on earth to heal me, I can look forward to the fact that even just that first minute in heaven will be worth ALL of the pain, disappointment, waiting, and suffering I have experienced in this lifetime and this particular trial.

crashed

I haven't written much.  I think because I felt like if I wrote that my body is not cooperating, that it would somehow jinx our adoption which was so so close to being finalized. But silly me, nothing can thwart God's plans!

When we started the process to foster and adopt, I was doing great -- on my way UP and FORWARD.  Even when Miles arrived, I was doing so well I said I felt nearly normal and our doctor was so encouraged and we thought there wouldn't be any roadblocks ahead.

But then about 6 months in....

And now a year out from bringing our son home....

We called in reinforcements - my mom graciously has come out to our state and stays for a week or two.  It usually corresponds with times my dad is out of town anyway so that it nice.  And the day after she arrived the first time, my body knew that help was available finally.

And my body crashed.  My husband and I were out on a "Lyme date" - the kind where there's low impact -- we went to a movie - I could sit.  We planned to get dinner after, but my body didn't feel right.  I said I was sorry but we needed to go home.  Being married to someone who understands helps.  He got us home, I walked in, dropped my purse, and immediately lay on the couch.  He could tell.....he asked if I needed my "medicine" that helps stop the tremors and "seizures" (they aren't exactly seizures in that they do not damage the brain, but they sure behave physically like seizures).  This hadn't happened in a year or so!

He milled around a bit and then I urgently said, "Get me TWO!  TWO!" and then it started.  Convulsing so violent that I was afraid my brain would jiggle right out of my body.  And it would.not.stop.  I curled into a ball and let it run it's course after taking meds.  My mom and husband kept the kids at a distance since we didn't want them to worry.  I'm not sure they even noticed me over in the corner of the room.

They aren't technically "seizures".  You hook me up to one of those machines during one and it will not show seizure activity.  They call them "partial seizures".  And I've only ever had one when I had help present. It's like my body can hang out until I know those in my care are safe.  Then it crashes.

We didn't think my body was that far in a bad place. We knew we needed to ask for help with my mom coming in but we thought that was just to give my body a break.  Caring for kiddos, even sweet, obedient ones is crazy.

And funny thing is, it wasn't adding another kid to the mix that brought my body down.  Little Miles is the easiest baby/toddler you ever could ask for.

I think it's my 3 year old that causes the most amount of physical work.  Her newly diagnosed Lyme&Co. causes a lot of sensory challenges.  She was also diagnosed with behavioral disorders that to the developmental pediatricians look very textbook.  To me, I can see the Lyme underneath.  We are praying and hoping that treating for Lyme will eliminate at least a few if not all of the diagnosis.  But for sure some therapy will just help her little self in general.

My doctor even said that at the clinic they see huge similarities in when parents who struggle with Lyme have kids -- when their kids are struggling, the parents struggle.  When the kids get well, the parents get well.  It make sense.  There can be so much anxiety watching your kids suffer.  I think it's worse too, because you KNOW how they feel since you've lived through it.  Poorest little kiddos.

So we are all plugging along (the three girls of the family who are infected) with treatment and we see encouragements and discouragements along the way, but that is just what Lyme is - a huge uphill battle to rid your body of the bugs and to teach your immune system to do its job!

So continue to pray for us and pray for this momma who needs some physical strength and a boost to get back to our sense of Lyme normalcy where I can do more than the basic needs around this house!  And praise God for family who is going out of their way to help so much!  It's wonderful to have family who truly understands the hardships this disease can cause!

back

Here I am.

The adoption of our son was completed in the beginning of June.  Praise God!  We are the happiest family ever :)

And now I'm using all my reserves to fight a sort of major "flare" up of my case of Lyme disease and Co.  I'm also helping my girls fight theirs.

Expect more on here.  That's all for now :)

meh

There really is so much to update on but I've been lax.  We are so close to a final adoption of our little guy and I know after that I will be inclined to write a lot more on here.  But here are some snippets:

*Jan 2012 - June 2012 = a steady INCLINE in my health.  A super, fast-forward moving ahead and we were so so pleased and thankful and so were my doctors!  They predicted I would be starting a "maintenance" regimen soon.  My protocols started getting me to that point....until....

*June 2012 - January 2013 = ever so slow DECLINE - not enough to make a big deal or put me bed-bound, but enough to leave us all scratching our heads.  Even my doctor. My last appointment in January had  them quite confused and I think with the holidays my body sort of surrendered to the decline and I sunk a bit under water because I had been treading for the last 6 months.  With a lot of investigation and true medical detective-ness, it was regrettably determined (and very light-bulby for me) that I was RE-INFECTED around the middle of last year.  More on that in another post eventually.

I'm sadly feeling symptoms again that I had not felt in a couple years, and having to re-do some protocols that were already completed.  While it won't take as LONG to treat the newly re-introduced "bugs", it is quite disheartening to my husband and me to have tasted almost near perfect health again last year, to going back 5 steps now and feeling really icky.  I am so thankful to be in the care of awesome doctors, though and I am confident that God will get me back to at least where I was before I began the decline again, in His time and most hopefully (and prayerfully) within a few months.

*My second little goose was diagnosed with Lyme and co-infections in January.  Quite sad, but such a huge explanation for some very sad symptoms.  She is being treated currently and is doing great and we've already seen improvement in her health!  Praise God!!  I will write more about her symptoms in another post soon because I think it's important to at least make others aware of what congenital Lyme can look like in toddlers.

*My oldest gooseberry is doing GREAT with her (now) year of treatment.  Her symptoms have improved SO SO much and she's nearly there to complete healing.  She's got some pesky Lyme stuff still hanging around, but she's right on track in her treatment and should be finished soon (Lord willing!)

Well, I do most definitely feel "meh" if that can be a feeling.  I long for even just an ounce more energy to make the day more bearable, but am so very thankful because I know even just a year and a few months ago I was not doing as well as I am now.

I will write again....hopefully soon :)