The monster inside me

I haven't posted in a long time mostly because things are pretty much the same.  There are lots of ideas that I ponder but I just haven't been able to make myself write them down.  So many of the daily struggles are with deep, dark and heavy things, that I hesitate to write them down.  I want to be real and transparent during this process, but I'm having trouble discerning between what it cathartic and what might just make me more discouraged or sound like I'm complaining. 

I decided to write about today because I had to deal, yet again, with a major theme in my life.  This disease affects me on so many levels and changes my behavior and reactions to the point that I don't recognize myself sometimes.  I struggle with not wanting to feel like I am excusing bad behavior just because of a disease.  At the same time I know in my heart that this is not me.  Sure, I need work on my character like anyone else.  So how do I fight harder to be better while not accepting the heavy condemnation for not being spiritual enough to overcome outbursts, meltdowns etc. 

I don't have anything that looks like an answer for this question.  All I know is that I am supposed to be reducing stress in my life and always feeling like a jerk sure does put a lot more stress on me.  I pray all the time for more patience and more grace.  I want to be able to bear this trial so much better than I am right now.  All I can do now is pray for a better sleep and less pain so that I might feel a little more like myself tomorrow. 

¹ God is our refuge and strength,
an ever-present help in trouble.
² Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
³ though its waters roar and foam
and the mountains quake with their surging.^[c]

⁴ There is a river whose streams make glad the city of God,
the holy place where the Most High dwells.
⁵ God is within her, she will not fall;
God will help her at break of day.
⁶ Nations are in uproar, kingdoms fall;
he lifts his voice, the earth melts.

⁷ The LORD Almighty is with us;
the God of Jacob is our fortress.

⁸ Come and see what the LORD has done,
the desolations he has brought on the earth.
⁹ He makes wars cease
to the ends of the earth.
He breaks the bow and shatters the spear;
he burns the shields^[d] with fire.
¹⁰ He says, “Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”

¹¹ The LORD Almighty is with us;
the God of Jacob is our fortress.   

Psalm 46 NIV (emphasis mine)

And the tooth shall set you free.

 Forgive me for indulging in the pun.  It just seemed to perfect for the situation to pass up.  Something started a week ago that is quite possibly a small pinprick of light at the end of the tunnel.  At this point any step forward is extremely encouraging.   I haven't seen any real change in a while and hence haven't even been able to come up with a blog entry.

I have to start with the saga of the tooth.   When I first got married and moved to Mexico, I discovered a small cavity in a lower premolar.  I didn't speak Spanish, didn't know my way around.  So I was dependant on my husband for information.  At that point he excitedly told me about how amazed he was that his dentist actually washed his instruments between patients.  Like washed, in the sink.  Needless to say I freaked out and refused to go until I found someone who sterilized their instruments.  Now, I have a good dentist who has modern equipment and more recent training....but I met her a few years too late. 

Meanwhile I waited until a trip to Oregon to see my uncle, the family dentist.  He chewed me out for having waited and had to put in a very deep filling.  It hurt me terribly for days afterwards.  The only thing that pulled me out of that was hand fulls of alfalfa pills.  So I made it with that filling for a few more years.  It started to hurt me on and off and finally I broke down and went to a dentist at home (better than the guy who rinsed his instruments, but still not so great) who did a root canal and told me that the infection was quite bad in there. 

A few years later, all of the sudden a whole bunch of tooth just fell off the front of it.  Oh, and it was hurting me again.  Well, the dentist I went to (in Mx) told me that there was no way that was hurting me because it was a dead tooth, therefore it must be the gums.  He also just packed a whole bunch of filling material onto the tooth to hold it together.  This is an important detail because now it turns out that the pain was because of a new cavity that had eaten under the tooth and down the root canal material and into the bone!  So when I said it hurt, I wasn't just imagining it. 

So a few years down the road now,  I went in to my uncle and we were looking at one cavity that I can see and I mentioned that maybe they should x-ray that tooth and see what they see. Well, what he saw was that it had to come out right that moment and that it had been causing infection in my body for at least 2 years now.

In everything I have read and heard in my short study of Lyme disease, this has been a repeated theme.  People who have an ongoing dental problem just can't get better no matter how much they treat.  Of course, for some reason, it never crossed my mind that this could possibly apply to me.  The tooth has not gone without a fight.  Even though my uncle said a large pocket of infection came out with the root and he took a layer of bone off to take out infection, I have been experiencing what the doctors call "discomfort" (but what really means screaming pain) for this whole week.  I did break down and start taking pain killers and then on Sunday we decided that antibiotics were the only choice at this point.  I hate to be taking those things, but I figure we can undo any damage from them later.  The point is to take care of this tooth situation and then go from there.

I am really feeling a lot of hope and faith that once my body is not fighting this constant infection, my treatments for Lyme disease will become more effective.   The ultimate goal is to be strong enough to go home and finish my treatments there so our family can be together full time!  I feel an anticipation in my spirit that the Lord is about to do something big in our lives.  I have no idea what it could be, but it will be good because it comes from His hand. 

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

James 1:17

 See, I am doing a new thing!
   Now it springs up; do you not perceive it?
I am making a way in the wilderness
   and streams in the wasteland.

Isaiah 43:19

The River Jordan

AARRRGG!!!  I had a post almost completed that I have been writing and editing for about a month now and I just erased it all!  I guess I was not supposed to write about that topic just yet. Sigh.

I am getting really bad about blogging again.  I keep falling into the trap of trying to write down some of the deeper subjects that I am grappling with in my heart and mind.  When I am not able to articulate exactly what I want to convey, I close it to "finish later."  I guess by my lack of posts, it is obvious how many of those I have managed to complete.  In my defense I had one almost ready.....but then somehow deleted it.  Meanwhile, the drafts folder is full of unfinished ideas.

So I guess instead of tackling a serious issue, I should just journal a little about where I am.  The answer is: not where I want to be, but I am trying to be at peace about that.  It is still a constant battle to find the right combination of treatments and to know which co-infection to be treating more than others and to know when a treatment is more important and when a nap will do more good.  I guess it all goes back to my theme: I am asking for wisdom with every step!

A while ago it seemed like we just were not hitting on the right combo and I was feeling very discouraged.  The Lord used an unlikely and unexpected source to minister to me: the girl's Bible story books.  They had asked for the story of Little Maid - which is the story of Naaman.  When we got to the part about him dipping in the river Jordan 7 times, it hit me.  The Lord gently reminded me "just keep dipping."  The Lord obviously could have healed Naaman without the river, or on any number of "dips." or in any way He chose.  But He chose 7 dips into the river Jordan.  The Lord's healing work in our lives is not about us, it is about His glory. 

So however and whenever He chooses to heal me, I have to rest in the knowledge that it is all for His glory and He knows best.  So meanwhile, I keep on trying different options and trusting the Lord to work it all out.

 No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons,^[ neither the present nor the future, nor any powers,  neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Romans 8:37-39

Good Gifts

.....Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows....

James 1

This year for Christmas, I got one of the the best gifts anyone could get.  Life.  Without a diagnosis I was headed toward a slow death.  That sounds a bit dramatic, but it's all too true.  So this year I was handed the keys to life, answers to so many questions and even a glimmer of hope for some recovery.  Ok, so it was a few months before Christmas, but I'm still counting it.  So while I treasure the things that my family gave me, you can see how even my beautiful new food processor pales in comparison to the thought of more years with my daughters.  

I haven't finished a post on here for quite a while now and about a thousand ideas have come and gone through my brain.  Maybe someday I will remember a few to put into words.  Life has just been too busy and one thing has overlapped with another to keep me either running, or trying to recover from all the running.  Since I last posted: my husband has come, gone back for three weeks and come again for Christmas.  I had a month to crochet like crazy so I could earn some Christmas money at a craft  fair.  While I was selling there, my oldest daughter was starting to get very sick and just as she was getting better, the baby got it next.  Then there was Christmas and the shopping, wrapping, cooking and cleaning that went into that.

That sums up more than a month in a few sentences.  The details are messy, stressful and tiring and I am happy to not think about them, with the exception of the good parts.  The main bit of good news being that even though Oksana's illness looked a lot like the one that gave her pneumonia and sent us to the ER in January, we (with the help of our wonderful naturopath) were able to keep it from turning into anything more serious.  One more important highlight is God's provision for us.  Money has been tight for a while now.  I know that's pretty much the story everywhere.  My plan was to use the cash I earned to buy our Christmas presents.  After two back to back trips to the doctor, I was left with twenty bucks in the bank.  The business was in between payments so without that little bit of money, we wouldn't have had much Christmas.  It was an extra thing that our Father did for us and I give Him all the glory and thanks.

During this last month, I have been inching my way through a book that the Lord put in my path at the library.  I feel like a starving person who has to carefully nibble a small amount at a time in order to not overwhelm their system.  When you have a chronic disease, there are not that many people out there who really comprehend what you live with day in and day out.  Who really get the physical and emotional ups and downs that come with a condition that never leaves you.  And thank goodness for that.  I would not wish this on anyone!  However, when you are surrounded by healthy people who don't get much more than a winter flu, it is easy to feel, misunderstood, lonely and isolated.  Sometimes it's just so amazing to hear from someone who "gets it."  If anyone really "gets it" it is Joni Eareckson Tada.  Her humility and maturity after 40 years of paralysis is beyond challenging to me.  This book is ministering to me more than anything has in years.  One of the reasons I am reading it a little at a time, is because I cry so much that I trigger headaches and have to stop.  I bought myself a copy for Christmas, so now I can read it over and over.  

When I looked up the verse that I wanted to use at the beginning of this post, I was reminded that it is the closing to a passage that begins: Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
God's good and perfect gifts often come wrapped in suffering, but they are, nonetheless, good gifts.  When we accept them as such, we lack nothing.
Merry Christmas!

Sticks and Stones

The hearts of the wise make their mouths prudent,
   and their lips promote instruction.

 Gracious words are a honeycomb,
   sweet to the soul and healing to the bones. 

Proverbs 16:23-24 

If you can't say nothing good, don't say nothing at all

Mac Powell

For some reason tonight I started thinking about things people have said to me over the years about my health problems. There are many, many people who have been as sympathetic as they have known how to be and they have been wonderful and a blessing to me in my trials.  I recognize that you can't really understand how I feel, unless you have been through a long-term, chronic illness yourself.  Just like the author of the spoon theory, I know that our loved ones can understand a lot because they live through this with us...but even that just isn't the same.

I am so thankful for all of my friends and family who have been understanding and empathetic to me.  As far as those around who have not been quite so sensitive, most of them obviously did not have intentions to hurt, they were just speaking from ignorance and/or trying to find something to say.  I was able to laugh at most of them pretty soon after, but some have taken longer to seem as funny.  Some things have been much more hurtful, but I don't focus on those.  It's much better to be able to laugh about it! That way something that could have been negative, becomes like medicine. 
A cheerful heart is good medicine, but a crushed spirit dries up the bones. Proverbs 17:22

It is interesting that if someone has a disease that is more obvious or something like a cold, people are usually kind and feel sorry for the person.  When your illness lasts more than a few months, responses are quite varied.  I see other posts around the web from chronically ill people who hear silly comments from people and they all try to share them and laugh at them.  So while they are on my mind, here's my top 5:

5) "Could it be psychological?"
4) "I felt tired like that once, and I just got up and kept going and I was fine!"
3) "Well, I just trained my body to live on less sleep!"
(This from an 18 year old.  I am guessing that around 30 she realizes that will not work forever)
2) From someone (formerly) in our church: "I just don't know why Alex even keeps Kaarina here. I mean, she doesn't do anything!"  (this one has always amused me immensely because I like to ponder what in the world my husband is supposed to do with me.  Beat me so I start working? Trade me in for Pastor Wife 2.0? Send me away? When the Russian Tsars wanted to get rid of their wives they would ship them off to a convent somewhere. Hmmmm.  Or maybe she would suggest that he use Henry the 8th's wife reduction plan?  Bless her heart.)
And the best of all.......
1) If you had enough/more faith, God would heal you. (this shifts the blame to me for being sick and ends up really being this question)

Oh and an honorable mentions go to: "just make more of an effort and you can do it."  Bless me.  If they only understood that I can use up my entire allotment of energy for one afternoon in one trip to the bathroom!

I think it's obvious from the type of comments, that people just opened their mouths without thinking.  None of them will ever read this blog and even if they did, they won't remember that they were the one who said that.  :)

I read the book of James tonight thinking about the power of the tongue.  I don't want to write this simply to log one more memory of this journey or to make the point that we should think carefully what we say to someone who says they don't feel well.  I also want to remember that what I say to people all the time is so important.    

Lord, here I am again asking for wisdom.  You have promised that if anyone ask, you will grant it.(James 1:5)
I ask Father, for help to edify with my words.  I ask that I might be filled with grace and wisdom and that my words would be a reflection of You in my life.  Let me be able to speak the truth in love and yet stay sensitive to the needs of others and to never say anything reckless that might intensify any hurt they are already feeling.  Let me speak words that heal.  Your words.

The words of the reckless pierce like swords, 

but the tongue of the wise brings healing. 

Proverbs 12:18 

 The tongue has the power of life and death,
   and those who love it will eat its fruit. 

Proverbs 18:21

Mama said there'll be days like this.

I have been working on a post for a few days now and it looks like it's not going to happen again tonight.  Ok, letting it go now. I want to discipline myself to write here, but it really can't become one more thing that stresses me. I have enough of that in my life right now.

I bumped up my treatment yesterday, thinking I was ready to handle more of the light.  I am starting to doubt that after Annika kept me awake most of the night and today was extremely difficult.  I have had a bad headache all day combined with body aches, fatigue and just a very low coping tolerance.  Days like this are harder because of course the girls decide to test me more than ever.  I try to take into consideration that they also have bumped up their treatment and are feeling the effects, but it's hard not to feel like they are purposely trying to drive me crazy!

My Lyme consultant told me that at this point lots of things would be trial and error.  She wasn't kidding.  Today we attempted the optimum treatment which means using the light in the morning and at night.  The night session left me agitated and restless and the girls got all hyped up and wired.  I think someone slipped them each a double espresso somehow!  It took both myself and Grandpa quite a while to settle them and get them to sleep.  So tonight's lesson is: rifing right before bed is not a good idea.  I guess tomorrow I will try to use the light earlier in the morning and do the second session right before dinner. 

Oh Lord, please give me wisdom to know how to do this best.  This process is not getting any easier yet.  I ask for help to persevere even when it feels like everything is falling apart. 

   Hear my cry, O God;
   listen to my prayer.

  From the ends of the earth I call to you,
   I call as my heart grows faint;
   lead me to the rock that is higher than I.
 For you have been my refuge,
   a strong tower against the foe.

  I long to dwell in your tent forever
   and take refuge in the shelter of your wings

Ps. 61:1-4

Amen

Missing Puzzle Pieces

Monster headache is joining me again tonight but I am going to push on through and write.  I really hope that this will be worth it when I can look back and read this from the other side.  I also hope that is at least somewhat coherent because at this point, I can't really tell!

Because of wonderful people who were kind enough to share their stories, I have been prepared for the first few months to be especially difficult because of the hertz reaction (die off from the Lyme) but there really are some days that have been harder than others.   It is becoming very clear that all the little things that I have found to help, through trial and error, are all important pieces to the puzzle.  Because Sunday was so busy, I skipped several steps and payed the price today.  Sigh.  I am believing for the day when I can have a busy day and not have to recover for the next three days.  But for now, I have to do every little thing or I pay for it.

So what all do I have to remember? For now my protocol is as follows:

• Rife machine (to zap bugs)
• Epsom salts bath 
• Scrub skin for extra cleansing
• Castor oil pack
• Vitamin C
• Probiotic
• Sub-lingual B 12
• Swedish bitters
• On-beet
• Calcium
• Magnesium
• Rebounder for lymph
• Multivitamins
• Vitamin D
• Evening primrose
• Alkaline water with Chlorophyll
• Lymph homeopathic
• Constitutional hydrotherapy - hot and cold (just realized I skipped this tonight...oh dear)
• Fresh juice before each meal
• Diatomaceous earth 
• Flax oil wherever I can use it

The list looks overwhelming and I think I might have even forgotten something.  I have to say though, that God has been very good and my parents have been so much help and I really have been able to do most things.  The best days are when I have been able to do everything.  The puzzle looks better when it's not missing even the smallest piece.  So I keep going forward, walking in His grace, and do as much as I can every day.

But you, Lord, are a shield around me,
   my glory, the One who lifts my head high.
I call out to the Lord,
   and he answers me from his holy mountain.  

I lie down and sleep;
   I wake again, because the Lord sustains me. 

Ps. 3:3-5