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

Wisdom and Honey

Along with a diagnosis of Lyme disease, I found out that I am supposed to be: wheat free, dairy free and sugar free and of course I already have an inherited soy allergy.  We are doing ok on the first two with only occasional forays into sweets.  Since my mom has been cooking what used to be considered pretty hard core health food since I was around 9 months old, you wouldn't think that we would be having to re-learn how to cook...but alas so many things are all new.  Praise the Lord for wonderful blogs like http://glutenfreegirl.blogspot.com/ and http://glutenfreegoddess.blogspot.com/ that are helping us figure out how to make substitutions and still be able to enjoy varied and delicious food.

So tonight we wanted to have a special family evening and watch It's the Great Pumpkin, Charlie Brown.  First, we had a dinner of a very tasty pizza (gluten free crust mix from Bob's Red Mill) and salad.  Then, for movie time the girls and I made (wheat free) maple cookies and we put cashew cream maple frosting on them to enjoy with some hot spiced cider.  Even though the sugar was cheating on the diet, the value of feeling almost like everyone else for a moment was worth it.  In "spoon" terms, I gave up some spoons in the effort to make the cookies and by eating sugar.  I know I gained back just as many, or more spoons from the positive experiences of 1) getting to do what I love: bake 2) splurging and eating something special and delicious and 3) making a wonderful memory with my daughters.

I obviously can't do this every day, but today at least it was the right thing to do.  This really is all about learning what helps and what hinders the healing process.  Above all, I need wisdom to know which is which.

Eat honey, my son, for it is good; 

 honey from the comb is sweet to your taste.

 Know also that wisdom is sweet to your soul;
       if you find it, there is a future hope for you,
       and your hope will not be cut off.

  Proverbs 24:13-14

Silver Spoons

I had planned to write tonight about how we discovered that I have Lyme disease, but since this is for me and I don't feel like writing about that, I'm not going to just yet.  So there :).

I just found a wonderful story tonight.  It is called "the spoon theory".  If you know anyone with any chronic condition, this can shed some light on all they have to deal with in day to day life.  She puts into words what I have been trying to explain for a long time.  So many people have tried to make suggestions about how I should organize my time and my life.  I know they have been well meaning and were really, sincerely trying to help.  Without meaning to, however, they usually produced the opposite effect.  When I felt hurt and or judged, well, it would take at least one spoon away from me for a while.  And being completely honest, I still am learning to not do this to myself.  I would look at others and how they were able to get things done or even just start dreaming of all I wanted to do and then, when I tried and fell short because of illness, the discouragement would seriously affect my spoon count.  (this analogy is really working for me)

One thing that has helped in some ways, is accepting the limitations and just trying to work within them.  In my case, the Lyme has been progressing.  This has meant that just when I accept a certain limitation, another one comes along.  I'm not complaining, this has just been my reality.  I have been trying to fight a shifting entity, without having any idea what I was fighting.  It's an understatement to say that is frustrating and discouraging.

The wonderful and exciting upside to this is that I now have hope for recovery.  I might always have to live my life with less spoons than "normal" people, but I think normal is really overrated anyway. *smile* 

A friend told me recently that it took her a long time to understand that suffering could be a blessing.  She said she used to fight against it and get angry.  I praise the Lord that I have been able to see His blessings, even in the suffering of these years and this illness.  I would love to say that I have been one of those people that you read testimonies about who never once uttered a negative word, even in the midst of the most extreme hardships.... but that isn't my reality either.  The Lord is working on me.  I am holding on to faith and His promises and being as positive as possible without losing a grip on reality.  I also don't want to move ahead of the Lord's healing process in my life and forget how many spoons He has given me at this moment.  For me, that would be a misuse of the idea of faith. 

I guess in the end, I just pray that whatever spoons I am left holding, will be refined to be at least silver, if not gold and that my faith be genuine and lasting.  Any of this will have been worth it if that is the result.

I Peter 1:6-9

⁶In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. ⁷These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. ⁸Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, ⁹for you are receiving the goal of your faith, the salvation of your souls.

Blank pages

I love to buy journals.  I have all styles and designs.  However, each one has, at most, 10 pages of writing that does not consist of lists, addresses or doodles.  I guess that goes to show how much I love to write.  I really, really don't like it and I'm not good at it.  Despite that, I am determined that this blog not end up to be another blank journal.  I need to have a record of this portion of my life.  First, for my myself and my family and second any friends who might be interested in how my progress is going along the way.   

This post marks the beginning of the "back again" portion of my journey.  The first part has taken 19 years.  Even writing that makes me cry.  So many things about my life make sense now, in light of the knowledge that I have probably had Lyme disease for 19 years.  But even after a month of knowing, it's still hard to absorb that information.  Especially considering the toll that Lyme takes on ones mental and emotional state, I realize that I don't have to have it all sorted out just yet.  So I am taking it in by (very small) pieces and hopefully I can use this tool to help work through each step of that process.

Through it all, I am in awe of God's faithfulness to me.  He truly has guarded my life and my daughters lives as we have lived with this disease in our bodies.  I see His hand saying "this far and no farther" sparing our lives and bringing us to the point of discovering what this is and finding treatment. 
A promise that He has given me many times over the years has been Psalm 121.  These words have so much more life in them to me now.

¹ I lift up my eyes to the hills—
       where does my help come from?

 ² My help comes from the LORD,
       the Maker of heaven and earth.

 ³ He will not let your foot slip—
       he who watches over you will not slumber;

 ⁴ indeed, he who watches over Israel
       will neither slumber nor sleep.

 ⁵ The LORD watches over you—
       the LORD is your shade at your right hand;

 ⁶ the sun will not harm you by day,
       nor the moon by night.

 ⁷ The LORD will keep you from all harm—
       he will watch over your life;

 ⁸ the LORD will watch over your coming and going
       both now and forevermore.