Update on Appointments

Two weeks ago I had several doctor's appointments.  I had a couple specialist appointments, an appointment with my GP and a couple appointments for my daughter.  It was an exhausting week, and I praise the Lord that He somehow pulled me through.

Although I am seeing one doctor who is convinced I have Lyme Disease, I also wanted to see some other doctors to make sure nothing else is wrong with me.  The appointments I had so far were pretty disappointing.  I seem to have difficulty communicating the seriousness and reality of my symptoms to doctors.  The doctors that I saw listened to me for a few minutes and without any further investigation dismissed me.  The one doctor told me that he believes I do suffer what I say I suffer, but cannot diagnose me or treat me.  The other doctor that I saw was more interested in telling me about his family than listening to my symptoms.  I was hoping for more attention from specialists.  It has been a stressful time for me.  It is hurtful to be ignored when trying to cry out for help to those who are supposed to help you.

The experience with these doctors has made me all the more thankful for the two holistic MD's that I have.  Both of them give me at least an hour of undivided attention when I go in for a consultation.  They are extraordinarily thorough in investigating what the problems may be (i.e. physicals, extensive bloodwork, etc).  They listen with a great deal of concern and compassion.  They have both demonstrated a real desire to help me get better and are distressed when they see me get worse.  God has been very good in leading me to these doctors.

My daughter also had a couple appointments.  There is some concern that she may have a hearing loss.  It is possible that some nerves are damaged, which would prevent her hearing certain frequencies of sound.  This means, she may be unable to hear the beginning of words, or the ends of words.  We are still investigating this, and have several future appointments to diagnose the problem more accurately.  Please pray that God would intervene and give Karalise good hearing.  Please pray that if there is a hearing problem, God would give Sony and I wisdom to know how to teach her.

I have been severely exhausted the last couple weeks.  I have not been able to get as much help at home with Karalise, so that has made things a bit more difficult.  Please be praying that God will give me just enough energy to appropriately care for my daughter, and train her in the way of the Lord.

Update

October has been an incredibly tough month, in more ways than one.  My health started a downward trend at the beginning of October, and has been steadily getting worse and worse.  Much grief has also weighed down my heart, as my dear friend and sister in Christ, Karissa Grandine, was taken to her heavenly home on October 17.  Much of the last couple weeks have been spent trying to grapple with this reality.  Although I rejoice that my friend now sits at the feet of her Saviour, Jesus Christ, and is forever safe from all earthly harm in His most glorious love, I am filled with grief at losing my friend who was so young.  Even more, I am greatly pained by the loss her husband and family members face now.  However, despite these things, God has been tremendously gracious, and has given me much peace and hope.  I mourn, but I do not despair, which is a miracle, as despair would be my typical response.  I praise God for His lovingkindness!

As for my body, it continues to get weaker and weaker.  I have been needing increasing help during the days just to get through normal daily activities.  I am profoundly weak, so that it is difficult to explain it.  I experience not just lack of energy, but a very burdensome and painful weight of fatigue.  The fatigue and lack of energy is aggressively attacking my body.  I have also been experiencing twitching of muscles, which at times overtakes my whole body.  I never knew until now what a terrifying thing it is to lose control of one's own body.  My heart cries for those who suffer from Epilepsy, Parkinson's, Lou Gehrig Disease and other such diseases that attack the neurological system.  I am only presently getting a taste of this, and it freaks me out every time.  It starts with my head, then shoulders, then arms, then legs, etc.  When I have an episode I find it hard to communicate, and am overwhelmed with a flood of tears streaming down my face.  As you can see, I am not very brave or courageous.  Thankfully, I do know that I belong to God, and no matter what happens, my soul will be with Him for eternity.

I am currently seeing many different kinds of doctors.  Next week I have 6 doctor's appointments!!!  I'm exhausted from appointments!  Anyway, please pray that God will give the doctors much wisdom to get to the root of the problem.  Please also pray that the treatments for Lyme Disease will be successful (I still receive them every three weeks).  Please pray that God will provide enough people to give me rides to my doctor's appointments.  Finally, pray for our family that God will sustain us physically, emotionally, spiritually, and financially.

Thank you for your love and prayers.

Brain Fog

For a long time now my thinking processes have been getting murky.  But just like pain and fatigue, this symptom is not easily evident to people outside of myself.  Even my husband, who is intimately acquainted with me, does not quickly remember this hindrance in me.

In the medical realm, this slowness of mind is called brain fog.  So if you consider the difference between driving on a sunny day but the sun is not glaring, when there are no clouds, the roads are dry, and it's smooth sailing versus driving on a cloudy day at dusk with a thick billowing fog and it's far from smooth sailing.  You may still get to your destination on the foggy day (with perhaps a couple breaks along the way, in hopes the fog will lift) but it was far more complicated and even dangerous than when you could see clearly on the sunny day all that was going on around you (the cars in front, behind, beside, pedestrians, animals, road signs, etc.).  That pretty well describes my experience in my mind.  I have difficulty seeing clearly in my mind, and then have difficulty expressing myself clearly.  I'll sometimes swerve to the left or the right in my thoughts, and not quite know how to get back on track and communicate what I wanted to.  Often I struggle to answer questions clearly, or it takes a lot more time to figure out answers to questions that should be obvious.

My memory is greatly affected as well.  My memory is shot - I can't remember the intersection I live at, or I can't remember the name of the church down the street.  I can't remember big details and small details.  I reach and reach and reach, and the process is exhausting, but still can't seem to find in my fog the information I was looking for.  I will confess that on one occasion I even forgot my name, and referred to myself by my sister Leanne's name (Leanne can testify to the truth of this, and laughs at me to this day!!!).  At least now when I forget somebody's name (which is frequently), I can say 'Don't worry, I have even forgotten my own name!'

In the last couple months, I have started jumbling my words.  And I'm trying to remember specific incidences, and am having difficulty grabbing at them.  Last night I was talking to Sony, explaining to him that I think I have been having especially bad days because the mety heavals don't want to come out of me.  What I meant was heavy metals (I am taking some medication to help eliminate heavy metals toxins from my body, but since taking them my body has crashed rather severely).  I had to call my husband to remind me what I had said - to further prove my difficulty of mind!  I do this word scramble quite a bit, but trying to remember other specific occasions is seriously giving me a headache.

The days of being able to know exactly what I want to say and how to say are long gone.  Some days are worse than others.  Some days I'm completely paralyzed in my mind, being unable to communicate anything.  Sony can ask me what's wrong, and my body is screaming with pain, but I am somehow incapable of expressing this to him.  You'd think it wouldn't be so difficult to at least say 'I hurt' or 'I'm in pain'.  Sometimes it's so bad that, Sony can even try asking me specifically, 'Are you in pain?' and I still don't know what to say.  On less severe days, I am able to express myself, but it might take extra time to express myself.  If I give a quick response, it is often not the most accurate response, because I have not taken the time to search in my fog for the most accurate response.  When trying to encourage someone, I can make a real jumble of it, because I don't know how anymore to say the correct soothing and uplifting words.  There are many times when a new person is trying to get to know me and asking me all kinds of questions when I fail to be able to respond in like fashion and return the questions to them.  I'm too exhausted from the effort it has taken to remember and form my answers to the those questions.

My husband tells me I write these blog entries too well, that I sound too normal, and don't seem to have any difficulty to think clearly.  But it does take me time to work out my sentences, and to pull out the words from my head.  Plus, for some reason, it has always been easier to think through my fingers.  Communication through speech seems far more abstract to me, and thus far more difficult.  Well, that scratches at least the surface of my difficulties in my brain.  Hopefully that will help you understand if I ever seem kind of stupid, slow, or rude in conversation.

A Rescue Mission - Thankful for Friends

I've shared in a couple posts how the past week has been incredibly difficult and lonely.  Well, the problems of the week were exacerbated by plumbing issues.  Our toilet flooded the bathroom floor and when Sony tried to plunge it, the sewage water then flooded our shower.  The bathroom was a disaster.  The plumber came in and thankfully fixed the problem (at least for now) but our washroom was still disgusting.

I was having one of those days where I was too weak to make it out to the mail box, let alone try and mop up that ugly mess. My husband had been up half the night with me, and then with Karalise, so I knew he wouldn't be up for the job.  Again, I was overwhelmed and helpless (that seems to be my theme for the week).

But praise God for my friends Phil and Karissa who came over and rescued us.  Phil entertained Karalise while also managing to tidy our disaster living room.  Meanwhile, Karissa bravely tackled the nasty washroom, thoroughly mopping, scrubbing and drying the floors and shower.  Then we had a nice little time of fellowship with them over dinner.

It was just a small scale disaster, only requiring a good mop up, but it was far beyond my capacity to deal with.  I was done in.  I suspect that if these friends hadn't come in, I would have been a sobbing mess, and the washroom would have remained a disaster for several days.

Thank you very much, Phil and Karissa.  And thank you Lord for providing merciful help in just the right time.

Sacrifices of Peoples with Broken Bodies

Naively I hoped for some improvement for today.  My plan was to go apple picking with a dear friend.  But I woke early (more than once) and have not been able to return to sleep.  My body is raging at me with pain, and I only manage to get around by tripping around the apartment.  I was thankful I some how caught the jar of soup I almost dropped, as I was heating some for breakfast.  The thought of trying to clean up shattered glass mingled with spilled stock and veggies bewilders me.

I have had 5 long days of getting up and forcing my body into at least minimal action so I can care for Karalise.  Some days I am so weak and with so much pain, I go into her with tears in my eyes.  I hate that, but they come unbidden.  My spirit is overwhelmed within me.  It breaks my heart to see the tears fall down Karalise's face as she can't understand why I am crying.  I suspect today will be one of those days, since tears have already been in my eyes for the last hour.

Usually Saturday's are my day of rest.  My break from the long, lonely weeks.  My husband is usually home, and he lets me rest in bed as long as I need.  But today, I felt it was more important that he serve others, so I am alone.  I'm disappointed my strength has waned, keeping me from my apple picking plans.  My heart faints at the thought of the long hours ahead.  Guilt washes over me as I consider another dreary day for my daughter, another day where mommy is too sick to play and laugh and teach.

But one thought gives me joy.  I may be too sick to be of any use to anyone, but at least I can give up my needs for help from my husband in preference for others.  So today, I do not suffer in vain.  I suffer so others may be blessed.  I hope God is able use my frailty in this way.

I have a dear friend suffering with similar pains and fatigue as I am.  Today she uses all the strength she can muster to go out and pray for people.  In her difficulties, she is learning it's the time spent on eternal matters that is really important.  She doesn't have much, but what she does have she gives with all her might.  May God richly bless her today, and bless those she ministers to.

It may seem like some people are useless lumps in their weakness, but there are things they can do for God's glory, according to the strength given to them - whether it is to suffer loneliness and helplessness so others can be comforted and helped, or whether it is to expend all the little energy they have to minister in simple ways to other broken people.

P.S. My attempt to let my husband help failed.  He felt I was in such terrible state that he is now coming home, and won't be helping.

Some Days (and Weeks) are Tough

I am sitting on my couch, looking out over my messy living room (which is nothing compared to the state of the rest of my basement apartment) and I am feeling completely bewildered and helpless.  Although it may not seem like it, I am struggling to bring words to mind and get them typed onto the screen.  I had a rough night because it took a while to get to sleep and I'm now paying severe consequences.  I feel the weight of gravity and the weight of my own fatigue pressing down on me, so that it is even hard to breathe. 

I have been in a sorrowful mood since Sunday.  We arrived back from a wonderful but far too short vacation late on Saturday night.  Although I was exhausted and my body all stiff and sore from the long drive, I was eagerly anticipating the Sunday morning service.  I love going to church, to be with God's people and hear from God's Word.  God is radiant in glory, power and love and I delight to spend time with those who belong to Him and reflect His beauty.  I also delight to hear from God's Word, so that I can learn in awe more of Him, as well as become more like Him.

I managed to get myself into the van that morning, even early enough to get to church on time.  Mornings can be rather traumatizing for my weary body, and to say it can be difficult to get it moving is an understatement.  About 3 minutes into the trip, the stabbing, gut-wrenching pain began.  I figured it would linger only as long as I was riding in the van.  I arrived at church, eager for the opportunity to talk with members of the congregation, and hopefully have opportunity to get to know them more.  We are new at the church, and with my health being so bad, it has been difficult to get to know people.  But as I walked through the doors of the gym, the pain became blinding.  This pain was centred in my neck, but setting off the fiery inflammation throughout the rest of my body.  I looked longingly over at the people across the room, wishing I could somehow manage the strength to get up and make my way over to engage in conversation.  I had no success.  A couple people stopped by my chair and spoke with me, but the pain, and now the fatigue was overwhelming my thought processes so that I found it difficult to communicate.  I think I managed to say something, but definitely failed to say what I wanted.  The service began, and this is when the pain became nauseating.  I somehow managed to make it back and forth to the washroom a couple times.  The sermon started.  My chair was uncomfortable, and I thought maybe being on the floor would help.  My stomach still seemed to be swelling upwards.  At this point, in shame at my obvious weakness, I left and found a seat outside against a tree so that I would not disturb anyone with my cries of anquish. After half an hour or more the cold became unbearable and I needed to go back into the service and get the keys to my van.  I was rescued by a dear woman who came and sat with me and rubbed my back to diminish some of the pain.  After the service, my husband took me directly home, where I have been trying to recover the rest of the week.

I share this because I would like others to understand the world that sufferers live in.  It's terrifying for me to expose these things.  I am afraid of being judged, misunderstood, rejected, and a number of other things.  The weakness of my body makes it more difficult to maintain rationality and composure.  I am lonely, having to spend the week alone, somehow trying to meet the needs of my 14 month old daughter.  I receive little communication from the outside world.  My family live too far away to be able to help consistently.  I desire to rejoice in my trials, but I struggle.  I am often disgusted with myself and my limitations - being unable to clean, exercise, be reasonable, serve my community, be a good mother, etc.  I seek to spend time every day with my Lord, but mentally and physically this can be very difficult, and thus frustrating.  I seek to be thankful, but more burdens press down on me, and it can be far too easy to become discouraged.

The more I suffer, the more I understand what others experience when they suffer.  My longing is that we would extract ourselves from the busyness of life, and love each other more by ministering to the needs of those who are struggling in our communities.  If the Lord ever gives me my health back, I hope He will enable me to be a rich blessing to those in need.  In the meantime, please let me know how I can be praying for you.  I have some time on my hands and am happy to bring my friends before the Lord in prayer.

May God be merciful to us, and help us to press on and give Him glory.

Fragrances

As a child, I thought perfumes and other scented products were lovely.  I loved going into candle stores and smelling all the different scents they could make.  I loved going to the perfume aisle and breathing in all the lovely fragrances.  I naively believed the romantic thought that they were made from flowers and essential oils.  When I smelled the apple cinnamon candles, I thought it actually contained apples and cinnamon.  I remember especially being delighted with the thought of all the flowers used to make my favourite perfumes...I even thought it would be a great career to be the one creating and designing fragrances from God's creation.

As I grew older, I started developing a headache whenever I passed by a perfume store.  Shortly thereafter, I wasn't even able to go into those quaint little candle shops anymore. 

This year, I get incredibly sick in homes with air fresheners and certain scented bath products (Old Spice body wash kills me).  Intense pain overcomes me, I am nauseated, get headaches, and even my throat begins to swell, making it hard for me to breathe.  My doctor has recently prescribed me a puffer so that I can breathe when I encounter situations where I cannot get away from particular scents that give me too much trouble.

My reactions are nothing compared to what some of my friends go through.  They are not even able to participate in church because they are so 'allergic' to the fragrances people in the congregation wear.  They have to sit in a separate room, or not go to church at all.  They are not able to work in most workplaces.  They are not able to easily go to the mall or any other public function.  They develop very severe migraines and severe breathing problems. 

My romantic notions of 'scents' have been shattered, and now I realise these fragrances are not made from flowers and essential oils, but are made from several harmful chemicals.  These chemicals are no better and no safer than those chemicals in cigarettes.  Therefore, I ask you to consider using scent-free products, so that you do not harm yourselves, and so that you do not harm people like me who get very sick because of them.  There is growing demand for scent-free products, so you can find these items marked 'unscented' or 'fragrance free' in your local grocery store and pharmacies, as well as at health stores.

Products to avoid because they contain parfum (harmful chemicals) are:

• perfume, cologne, aftershave
• shampoo, conditioner, soap, body wash, body lotion, deoderants and other body and hair products
• nail polish and remover
• laundry detergent and dryer sheets (these can cause the most severe reactions)
• febreze, air fresheners (one of my doctors refers to these as pure poison)
• candles, potpourri, incense, etc.
• household cleaning products - dish soap, window and surface cleaners, all purpose cleaners, etc.

I actually gave up using scented products several years ago after living with someone for a couple months who had a severe allergy to these chemicals.  I saw how much physical pain she suffered.  I also saw the emotional pain she suffered.  She wanted to develop friendships, but couldn't even get close to anyone who was wearing something with a fragrance.  She felt lonely and isolated.  I am beginning to understand now how she felt, as my own allergies worsen, and am forced to keep my distance from certain people wearing strong fragrances.  

I encourage you to love others by not using products that are harmful to their health.  I encourage you to act wisely on your own behalf and not use products that are harmful to your health and the health of your family.  These products are especially dangerous to young children.  Please refrain from using scented products!!!

Please read the following article by David Suzuki for more information:
http://www.davidsuzuki.org/what-you-can-do/green-your-workplace/go-fragrance-free/

Thank you for your kind consideration of this important matter.

My Lyme Diseae Treatment

Many people have been asking me what my treatment is and how it is going.  I thought I would attempt an explanation here, though it is rather complicated.

1. I am seeing my family doctor very frequently to get sleep support.  Insomnia plagues many with Lyme Diseae.  I have tried every natural sleep therapy and supplement I can, and nothing has worked.  I've heard one doctor describe sleep as nature's nurse.  There is little hope of improving my health if I am not sleeping, and actually my health takes a very drastic dive when I lack sleep.  This means I am taking some sleep medications until I can teach my body to sleep on its own.
2. I am awaiting appointments with an Infectious Disease Specialist as well as an Environmental Health Speciacalist in order to delve deeper into what is happening in my body.
3. I am receiving gentle detox protocols from a doctor in order to try to eliminate heavy metal poisoning from my body.  These are supplements that I take. 
4. I am receiving acupuncture, massage therapy, chiropractic care and naturopathic care to help me cope with all the varying symptoms (intense pain, debilitating fatigue and weakness, emotional fragility, etc).
5. My primary treatment is the most complicated to explain.  In order to kill the Lyme Bacteria, I am being treated with a Bicom machine, a technology from Germany, which is energy therapy. Basically, the Bicom Machine is able to reverse the energy imprint of the Lyme bacteria in my body.  When that energy imprint is reversed, the environment in my body becomes impossible for the bacteria to survive in.  In my research, I have found that this seems to be the most effective and safest way to treat Lyme Disease.  The typical way to treat it is with long term antibiotics (for up to 3-4 years or more).  Taking this many antibiotics can be quite dangerous, and still not be very effective.  Lyme bacteria is a spirochete (like the Syphilis bacteria) and it also has a biofilm which allows it hide in the body undetected...even when attacked by antibiotics.  This bacteria has become more and more resistant.  So this is why I have chosen the Bicom therapy.  Every three weeks I go to the clinic and sit in a comfortable chair for 2-3 hours.  I sit against a pad that is connected to the Bicom Machine, and it does its work.  I feel slightly groggy and a little funny during the treatment, but other than that nothing crazy happens.  Usually I am quite tired for the next three days after a treatment.  I have experienced great improvements already because of this therapy.  For a while my stomach got to be so sensitive it hurt to eat carrots.  I didn't know what to eat anymore.  Because of these therapies I am able to eat a lot more variety of food.  I am also very slowly increasing in energy.  I pray that God will hear my prayers and use this device to completely heal me.

In Memory of Sweet Sarah Nell

The Lord has been pleased to take home to His side my sweet friend Sarah Nell.  She passed away suddenly a couple of weeks ago, her funeral was just this past Saturday.  She was just a little older than I.  She leaves behind a husband, they had been married only one year.  She also leaves behind her parents, she was an only child. 

Sarah came into my life 8 years ago.  I don't know where to begin to describe how lovely she was, or what an impact she had on my life.  I was counseling/mentoring/discipling young women at His Mansion in New Hampshire.  I went there to counsel, but was incredibly frail and weak and foolish.  One of the first things we were told was that the only difference between those of us who had come to counsel and help and those of us who came to get cousel and help was the application form we filled out.  I felt the truth of this to my core, and on several occasions seriously considered signing up to get the help, rather than give it.  Anyway, it was in this context that I met Sarah.  This young lady was assigned to me - I was supposed to oversee her spiritual growth for the next several months.  She lived in my room (on the bunk above me), we ate together, worked together, suffered together, laughed together, struggled together, etc. I poured out my heart for Sarah (as I did for all my 4 girls) and sought to love her by pointing her to the hope of the gospel in Jesus Christ.  She had many things to overcome in her faith.  But I was very humbled by her.  God had already been doing a special work in her heart, and there was such a sweetness in her soul.  She came determined to learn as much as she could about God and how to serve Him.  This fervency I have seen in very few people.  She was incredibly humble, and received counsel with an open and eager heart.  I can't say that my soul is as sweet and loving as hers.  I can't say I am as humble and willing to hear rebuke as her.  Having that precious privilege of watching her press in to know God and be transformed by Him taught me more than Seminary ever could.  I learned from her humility.  God resists the proud but gives grace to the humble. 

Like all of us, Sarah has probably had several ups and downs in the last 8 years.  But I know in the end she greatly loved her Lord, and desired to give her life to Him.  She had a serious leg injury, and for a while was unable to function physically.  She told me should would often lay in bed and pray to God "You got this?  I get it."  Sarah submitted to the life God had alotted to her, even in the face of physical pain and disability.  As I struggle with my own physical limitations, I wish I were more like Sarah and better able to accept from God's hand the suffering He allows in my life.

I wish I had words to express what a beautiful woman this dear friend of mine was.  I pray that her testimony would live on, and that those who have been left behind would seek to be humble and flee from pride.  God resists the proud but gives grace to the humble.

Farewell, sweet Sarah Nell.  I look forward to meeting again, in the shelter of our Saviour's arms, where I will see your face reflecting the glory of Christ.  Farewell.

Just Human

I'm learning there is much grace in having Lyme Disease.  This disease keeps me vulnerable, frail, foolish, and broken.  I can't lead that pristine polished picture of Christian life, where every wayward inclination, messy vulnerable emotion is hidden away into the deep recesses of our closets.  I don't have the luxury of easily deceiving myself with self-righteous indignation that I am above reproach, worthy of respect and one who cannot be knocked off their pedestal.  I am not trying to imply that most Christians are guilty of this.  But there does seem to be a temptation to hide our messy humanity under the carpet, and let everyone believe we've got it altogether.

My pride has suffered several blows, especially in the last few months, as my emotional instability, follies, insecurities, etc have been exposed for everyone to see.  These are things I'd prefer to keep hidden.  I would like people to think I am strong and a mature woman of God.  Instead I have come tumbling off my pedestal numerous times, and at this point realise that as long as any one puts me up on a pedestal, I will inevitably fall off.  But PRAISE GOD!!!  I am glad that my weaknesses can be exposed to all, so that God's strength will be glorified.  I am glad that I am forced to learn I am but dust and my absolute need of my Saviour Jesus Christ.  I am glad that I will inevitably fail anyone who tries to put their hope in me so that they can turn to Jesus Christ who never fails. 

Learning Joy in Suffering

Just when I thought I could not bare any further suffering, this past week brought deep emotional pain.  A loved one desperately hurt me.  I thought it was the last straw.  I was already getting no sleep, already fearfully agonized with pain, already laden down with cares.  I seriously thought God desired to crush me.

What I have learned is that God, in His mercy, did desire to crush me...to crush my sinful nature and continue His work to make me more like Christ.  In the midst of this very painful refining time, where God burned away more and more of my selfishness and sin, God gave me much grace.  He gave me one friend in particular who held my hand through the week so I wouldn't sink utterly into despair.  He gave different pastors to speak truth, hard truth, but loving truth to my heart so I might press on in my faith.  He gave other friends to pray with me and weep with me.  I have learned I am not utterly abandoned.  God has bestowed much grace.

Lessons of Joy I am Learning in the Midst of these Sufferings:

• It is far better to suffer and die to self than to live in comfort and continue to live for self.  I wanted happiness.  I wanted to live happily with my family, aquire a small home, live in close knit community with my church, offer my gifts up to God, be hospitable, travel in order to enjoy God's creation, etc.  I wasn't seeking riches, fame, or evil things.  I was seeking good things, but God placed in my life the great discomfort of physical and emotional pain to teach me to yearn for Him first and foremost.  Anything that is treasured more than God is idolatry.  And those idols are empty.  The joy of life, true joy, comes only through God.  We must always delight first in the Creator, not first in the gifts of His creation.
• As I learn to love with the grace of Christ, forgiving and blessing those who hurt me as Christ has forgiven me, I learn all the more the sacrifice Jesus Christ made for me on the cross.  He bore my shame, He bore the wrath of God for my sake, although I was seeking anything but Him and although I continue to sin against Him.  Jesus Christ's love for me has come at great cost, it has been given to me at the cost of His very life.  I can rejoice in the pain of loving those who hurt me most because then I see ever more clearly what love Christ has for me.
• Every added pain, every added sickness, every added loss makes me vividly aware that I am just passing through on this earth.  My home is in heaven.  My love for the world grows less, and my anticipation to see Christ face to face grows more intense. 

At first glance, these lessons may not seem very joyful, but they are indeed!!!  Through these trials, God is revealing Himself to my heart, and nothing, absolutely nothing can compare to knowing Him.  Though it is difficult, I can say I rejoice in these trials because God has used them to show me Himself.  May He grant this bruised reed the grace to love Him.

Yearning for God, but Afraid to Trust Him

I recently read through some of the Psalms.  I was especially taken with Psalm 40, 42 and 91.  It is amazing how well they speak of how I feel and what I am experiencing with my current struggles with Lyme Disease.  I feel attacked on all sides, betrayed, vulnerable.  It is wonderful to have such comfort from God, to read that He is my fortress and my salvation.  Reading these Psalms brings to my mind memories of sweet times in the past I have spent with Him.  I can honestly say that the very best times of my life have been the times I have spent with God - playing the piano, praying on a mountain or on a farm in the city or by the water, praising Him along with others, or sharing with others of His goodness.  Nothing on earth can possibly compare to these precious moments I have had with my Lord.

However, as I read these beautiful Psalms, and longed for those sweet times of old, something in my heart was distant from God.  I realised something has changed, and now I am afraid to trust God.  I have suffered such intense pain, such brutal terrors of night, such loneliness, helplessness and day after day of more and more disability.  In those days I have prayed to God, pleading for grace, for a little relief, or if nothing else, at least that small whisper of love only He is able to give.  I heard nothing.  And now I wonder if I am rejected, lost to God.  Please don't misunderstand, I do appreciate those blessings of 'common grace' I know He bestows.  I have a wonderful husband who has stood by me lovingly and faithfully.  I have a beautiful healthy daughter who has been a happy and easy baby.  Although we do struggle financially, we have not yet been completely sunk.  And in the last couple months much help has been provided.  I know God has been good to me though I suffer.  Furthermore, I do not want to doubt God.  Every day I seek Him.  Every day I yearn for those sweet days of old.  I want renewed to me the joy of my salvation.  It's just that my heart is scared.  I poured out my soul to God, I sought Him with tears, and that simple request, that longing just for a whisper of love was denied.  I am hurt.  I am confused.  I am finding it difficult to reconcile why God remained distant during my most desperate hours.  I can cry with the Psalmist 'My God, my God why have you forsaken me!' 

As Christians, we have a lot mixed up.  For some reason we forget all those warnings of suffering in Scripture.  And in the midst of our suffering, we forget all the beautiful passages which describe how suffering is used to make us more into the image of Christ.  So although my heart is having difficulty trusting God, I will continue to pursue Him, and ask Him to know my frame and understand that I am but dust.  I will plead with Him day after day to teach my heart to trust Him until I one day enjoy those sweet times of fellowship with Him again.

Lyme and Struggles with Envy

Lyme disease is a terrible disease.  It causes havoc in the body you don't want to even imagine.  It threatens even one's sanity, as pain, neurological damage, insomnia, and all kinds of other bodily dysfunction invade every moment of life.  It is even more terrible because it is largely misunderstood and unknown.  Although in many ways it would be preferable to have cancer, cancer patients get a lot more compassion, help and medical support.  I have a friend recently diagnosed with cancer, and she came to visit me and was horrified by how disabled I have become.  She said she is doing much better than I.

As I live from day to day, I am seeking grace from God to accept this disease and its damage on my life.  I am seeking to be content with my circumstances, and thankful for the opportunity to grow in faith.  However, this is a war like none other.  Despair, envy, fear, anger, and a slew of other emotions wage war in my heart and mind.  Today, my struggle is with envy.  I have to fight, but I have so little strength, and I feel so sick (nauseous, all encompassing pain all over, weakness, etc.) it feels nearly impossible.

Why envy?  Perhaps it is obvious to you, perhaps not.  If you have ever suffered, you might understand.  I live in a basement apartment.  We are very thankful for this spacious place God has provided us with.  However, we are financially tremendously burdened.  Both Sony and I have jobs that are not as prosperous as some.  Now I am unable to work.  Even without all the added extra expenses we incur due to my illness, we would not likely be able to afford our own place in the GTA.  But we do have all those tremendously weighty extra expenses.  It is by God's grace that we aren't completely sunk financially.  That is why we are in a basement apartment.  Now consider my fatigue, my pain, my condition which continues to plummet.  Probably the one most important thing for me at this time is getting enough sleep.  Sadly, insomnia also comes with Lyme.  It used to be I could sleep through noise.  Now, even a pin drop wakes me up (and that's with ear plugs!!!).  Our landlords are gracious people, but they need to live upstairs.  This means no sleep for me.  It's getting better at night, but that does mean when my Lyme insomnia keeps me awake at night as it frequently does, I don't have the freedom to sleep at all during the day...no matter how often I try...and I try every day.  Today I feel especially sick, nausea seeming to flood through my veins, even my limbs (don't ask how that's possible).  But in these moments when I most need sleep, desperately need sleep, I am trapped in a basement apartment where sleep is not possible.  I don't have the freedom to sleep.  Such a basic freedom, but it illudes me.

And this is where envy enters.  So you see, my envy is not so much a matter of wanting bigger and better.  It's a matter of being desperate for a basic need, as important as food itself.  In these moments I am flooded with desire for my own house - a house because I can make a little sleep cave free from noise for myself more effectively in a house than in a condo or townhouse.  Then rushing into my mind are thoughts of all those friends who have houses, but have the health to sustain them to live in an apartment such as mine.  I want to want their houses.  I ask God why those who really need such things are denied.  I consider all the others like me who are sick.  They are too sick to work, too sick to get treatments they need, too sick to even have a place conducive to healing.  It's a vicious circle.  We are sick, thus financially strapped, and thus unable to afford what we need to get better so we get even sicker.  I just want to live!  But sickness = getting sicker. 

I am obviously very happy for any of my friends who are able to afford such blessings.  But I have to confess that it is a struggle, because I see so clearly how much improvement I could enjoy if I just had something as simple as freedom to sleep.  God has been gracious, and my landlords will be going to Australia for several months come September.  I just have to somehow survive 2 more months.  But ever present in my mind are those who do not enjoy such hope...they are stuck, and their health is declining faster than ever.  Please pray for us, pray for our hearts, as we are incredibly physically weak and ripe for temptation.  We desire to honour God and learn contentment, but the road ahead seems nearly impossible.

Lyme Disease: The Epidemic

Do you know what Lyme Disease is?  Do you know someone with Lyme Disease?  Do you know the signs and symptoms of Lyme Disease?  Do you know how to prevent Lyme Disease from eating away at your entire life?

Chances are you really know very little about Lyme Disease.  I would like to take a little time now to explain Lyme Disease in hopes that I can warn you of the dangers of this insidious disease before it destroys life as you know it in you or in someone you love.


What is Lyme Disease?
Lyme Disease is passed to humans by a tick bite (a small poppy sized bug) and they reside in wooded areas or grassy areas.  These ticks carry a bacteria called Borrelia Burgdorferi.  This bacteria causes Lyme Disease.

What are the Initial Symptoms?
-Tick bite
-Bull's Eye Rash (white in middle, red at edges which can be the size of a dime or cover a person's entire back) (possibly on 50% of people get this rash)
-Flu-like symptoms (fever, aches, etc)
-Profound fatigue
-Arthritis Pain

If you have any of these symptoms, get yourself to a doctor asap for treatment!!!  The sooner Lyme Disease is treated, the better the chance there will be full recovery.

Later Symptoms:
These symptoms may or may not be present.  Each person presents a unique set of symptoms, which makes Lyme Disease very difficult to diagnose.  Lyme Disease is known as the great imitator, and therefore imitates several other diseases.

-facial paralysis
-fibromyalgia/chronic fatigue symptoms
-twitches
-headaches
-stiff neck
-widespread pain
-vision problems
-diarrhea
-constipation
-chest pain
-heart palpitations
-mood swings/depression
-development of neurological diseases such as Parkinson's, MS, Lupus, ALS, etc.
-in children: Autism, ADD

For a comprehensive list, please see this link:
http://lymediseaseassociation.org/images/NewDirectory/Resources/DrB_SymptomList2005Pdf.pdf


How is Lyme Disease Treated?
Lyme Disease is treated fairly easily in its early stages with 1-2 months of antibiotics.  However, the bacteria is growing more and more resistant to antibiotics, and several strains of antibiotics may need to be tried before treatment works. 

In its late stages, Lyme Disease is very difficult to treat.  You need to find a Lyme Literate Medical Doctor.  Go to http://www.canlyme.com/ to find such a doctor.  Typical treatment is long term antibiotics (6months - several years).  There are also a growing number of effective alternative treatments.  I will speak of these in another post. 

Chronic Lyme Disease:
Those who have suffered with Lyme Disease for a long period of time (1yr +) have varying issues.  Some are completely debilitated, unable to take care of themselves.  Some will die.  Some develop 'psychiatric' issues related to what the bacteria is doing in their bodies.  Some develop neurological diseases (MS, Parkinson's, ALS).  Some suffer great amounts of widespread pain and fatigue.  The longer the Lyme bacteria has to fester in the body, the more damage it does and the sicker the Lyme patient gets.  Lyme Disease steals life, whether that be literally (death) or whether is debilitates the patient until they are unable to live life (possibly meaning being bedridden, unable to work, in too much pain to know joy, etc).  It is a very scary disease.

Testing:
Unfortunately, the Lyme Disease test covered by OHIP is approximately 90% INACCURATE!  Blood tests that are more accurate are very expensive ($400+), and even they cannot offer complete accuracy.  These tests give a lot of false negatives (so it will tell you that you don't have Lyme when you actually do have it).  Most Lyme Literate Medical Doctors diagnose by symptoms.

Where are the Ticks?
Ticks are spread by migratory birds, animals, etc.  They are all over North America, and all over the world.  In Canada, the greatest concentrations of ticks are in Southern Ontario and parts of Quebec.

How to Protect Yourself?
Deet Mosquito Spray helps a bit.  It is recommended to wear long sleeves/pants when spending time in/near wooded and grassy areas.  The most important thing is to watch for symptoms.

Scary Possibilities:
-It is possible that other biting insects can carry Lyme Disease (such as mosquitoes, possibly even bedbugs!!!)
-It is likely that Lyme Disease can be passed from mother to baby, and through breastfeeding (there is a high incidence of miscarriage for pregnant women with Lyme)
-It is even possible that Lyme Disease is sexually transmitted (which means it is in our blood banks!)
-Lyme Disease may be the cause or a cause of diseases like Alzheimer's, Chronic Fatigue/Fibromyalgia, Parkinson's

Lyme Disease is in your country, and the number of of people getting it is growing phenomenally. PAY ATTENTION!!!  Don't end up like me, 8 years sick and now so debilitated that it is a rare day I can even leave my house.

For more information:
http://www.canlyme.com/
http://ilads.org/
http://lymediseaseassociation.org/
http://www.lymediseaseresource.com/
http://lymebytes.blogspot.com/

Make sure to watch the documentary Under Our Skin.  It is available at the Toronto Public Library, Richmond Hill Public Library, and at http://www.underourskin.com/.

May God grant you health.

Thank You

Sometimes when sickness plagues a person, it is easy to focus on the screaming of pain and the discouraging limitations.  I confess, I can forget to be thankful.  I wanted to take some time today to give thanks to all those who have blessed and helped us.


God:
I thank God for His wisdom and mercy in providing me with such a loving and sacrificial husband.  I could have been alone and dealing with this, and I don't know what I would have done.  I also could have had a husband who expected me to serve him and incapable of any compassion for my situation.  I am so thankful to God that I have a husband who serves me, even in my darkest hours.  I am also thankful for my daughter.  Many people with Lyme Disease have miscarriages, stillbirths or babies who die from Sudden Infant Death Syndrome.  My baby girl has been incredibly healthy.  I am thankful to God for a baby who is happy and easy to live with.  She doesn't make life difficult for me.  She doesn't fuss a lot.  She loves to make me smile.  She is content to play by herself.  This is certainly God's grace.  I thank God for moving me into this apartment just in time.  The house I was living in previously had many stairs, and God provided this apartment (which is all one level) just as I was seriously crashing.  I am thankful for God's provision of a job for Sony last year so that we have a little bit of provision during this time of financial difficulty.  I am thankful to God for His Word which gives me hope to press on.  I am thankful to God for the hope that one day He will personally wipe away my tears.  I could go on, but we don't have all day.

Family:
I am so thankful for my family as they seek to really understand what I am struggling with.  This past weekend my parents came and my mom cooked up a storm so I don't have to prepare much food this week.  They also gave me a bunch of meat (I need meat without hormones, etc).  I am thankful to Sony's parents who will be trying to come once every week to babysit Karalise in the mornings so I can rest.  I am thankful for my sister Lorri who picked up a car seat for me because we were too tired to get out.  I am thankful for my sisters who write and call me to encourage me.  I am thankful for my sisters and their respective guys who helped me move a month ago...packing us up and moving us.  I am thankful for my grandma and Miss Evans who have prepared meals for me, babysat Karalise and taken me to many doctor's appointments.  I am thankful for cousins who have offered to drive from great distances to come and help me, even though they have babies.  I am thankful for my husband who is patient with my shortcomings and limitations.  I am thankful for how he has taken on the role of housekeeper, mother, father, counselor and so on and so forth while I am unable to do my duties.  I am thankful for his sacrifices on my behalf (moving me to a different church so I can get out to church; quitting involvement in various ministries so he can be home to help me, etc.).

Friends:
I am so thankful for the phone calls, the e-mails, the gifts, the visits, the prayers, the love, the help and the babysitting.  I have had friends come over and make food for me.  I have had other friends buy meals from restaurants for me.  Other friends come and help with Karalise and cleaning at the last minute when I'm desperate for help because I am too sick to do anything myself.  God has given me so many good friends.  I am thankful for all these things and so much more.  I have had friends bring me flowers, clean my house, pack my things, help us move, give me spiritual counsel, allow me to stay with them so they can care for me, drive me to appointments, bless my husband, give us gifts of money and so much more.  I am attending a new church, and several people, without even knowing me have offered to help in any way.  Several at the church we have had to leave have given us the same offer, as well as financial support, and have even lent me a wheel chair.  Thank you friends.

Thank you God, thank you family, thank you friends for all your support during this time.  It has been very difficult.  In the last month there really been an outpouring of grace from all of you.  I know I have probably forgotten something, but please know I am thankful.  May God bless you all and keep you all.

Who Am I

My days are spent just trying to survive. I basically only get out for church, and on occasion get driven to the store to pick up supplements/food that I need. I lay on the couch watching my baby all day, most of the time unable to play with her unless she comes to me. In the evenings I crash, trying to find something to distract me from pain (either with a book or tv). The day is ended with a long bedtime routine and prayer with my husband. People visit, but I am too sick to socialize and usually take the opportunity to lay down in my bedroom while they watch Karalise. I'm attending a new church, and I'm always wondering what people think of me as I barely hobble over to my seat (this week that seat was on the floor since I could did not have the strength to hold myself up in a chair). I sit there uncomfortably, desperately using every last ounce of energy, just trying to listen to and comprehend the sermon. This week I was too weak to hear much. I look out on the congregation and long to get to know them, but don't have the energy to pursue friendships, let alone new friendships.

Honestly, I don't know who I am anymore. A couple years ago, I was a young woman seeking the face of God, yearning to bear fruit in His service for His glory. I loved to listen to people and encourage people. I thrived on fellowshipping with the saints, as we extolled God's goodness with one another. I had weaknesses like any other, but appreciated exposing my weaknesses to root out the darkness. I loved learning about God. I was most excited when I saw others growing in the Lord. I wanted to serve alongside my husband as his helpmate, encouraging him in the ministries given to him. I wanted to train up my daughter in the fear of the Lord, giving most of my strength to her education. I had hoped to homeschool. I wanted to disciple young women. I wanted to provide mercy to those who suffer.

Those desires are still somewhere in my heart. However, my body has taken over. Debilitating weakness cripples my body and my mind. I will confess that I struggle with envy...envy of old men who walk twice as fast as me with their walkers. My husband laughingly tells me God has given me the gift of encouragement...it must really make their day when those feeble old men realise they could do laps around me. I am rarely able to make my own meals. Cleaning is even more scarce. I yearn to get out in the sun for walks, but am so weak I would make it one block and not be able to get home again. I'd just be stuck there collapsed on the sidewalk. As for my mind, it is difficult to remember things, to think clearly, to hear my thoughts above the screaming of pain. I pray very simple prayers now. Sometimes I am only able to get through half my prayer, just because I am too exhausted to continue. Yes, even using my mind is exhausting.

Who am I? It feels like my debilitation now defines me. My husband sees pain and suffering. Many of my friends are lost to me...I am too weak to pursue them, and it is rare for them to keep in touch with me. The friends who do visit are there to help, which I desperately need, but I feel like I've lost the ability to really communicate with them. It seems like they too are only able to see the weakness, the brokenness. I feel like strangers must think I'm drunk or crazy or both. I feel eyes on me, I feel questions, but am unable to be anything other than a bruised reed.

Lynette is now a woman of exhaustion, weakness, and pain. She struggles in her faith as much as she struggles just to maintain a grasp of her mind. Is there any trace of the person, the soul, or have the bodily ailments consumed her?

An Introduction

Welcome to my blog.

I suspect my time on here will be limited considering the severe limitations of my body and mind. However, when I am able, I wanted to share my struggles in order to shed light on the reality of suffering in God's people. Especially in this country, life is pretty easy for the vast majority of people. Traffic jams, lineups at the grocery store, relational conflicts, flus, colds and headaches are often the extent of suffering on an average day in the average person. Don't misunderstand me, I know everyone suffers to some extent, and I do have compassion for any suffering, no matter how small. And every Christian must experience greater degrees of suffering. However, not everyone experiences longterm, widespread suffering. I share my story, not to say that I suffer the worst. There are many who suffer far more than I, those who have lost loved ones, those who are frought with far worse diseases, those who are lonely, those who live in war torn countries, etc. I share my story to encourage Christians to consider others, to enter into their pain, and to have a better understanding of how to pray and provide for them. I am just one example of one who experiences longterm, widespread suffering, and it is mild compared with many others.

I struggle with lots of things. I have struggled with a lot of things. I am extraordinarily sensitive, in body and soul, and have been aquainted with a broken heart as well as a broken body. I will be focusing on my broken body, and the consequences that has had on my heart.

I have have had fibromyalgia symptoms (widespread intense pain) and profound fatigue since the fall of 2003. Since then I have discovered I have many food and environmental allergies/sensitivities. I have been to doctor after doctor seeking help and seeking answers. It was only last year that I found a doctor who would really help me. That's 7 years of struggling completely on my own. In that time, I had no choice but to work. My family was unable to support me. For several years I worked in a shoe store, which demanded a lot of physical activity. There were many days I was in tears as I worked, struggling to keep customers from seeing my agony. I yearned for rest, but no matter how much I rested, my body was still exhausted and in pain. I didn't share the extent of my struggles with anyone. On occassion I would call home and tell my dad I couldn't do it anymore, the pain was unbearable. He would convince me to press on, and so I would at great physical cost. When a receptionist job became available, I jumped at it, even though I had a pay cut. I quickly discovered that the pain and exhaustion would consume my life, no matter what kind of job I worked. My health has been going downhill, and now I am unable to work, in fact, hardly able to leave my house. Much of the time I am bedridden. There is nothing I can take for the pain. It used to be I would sleep, but never feel rested. Now I have difficulty sleeping and the lack of sleep kills me. The nights I am unable to sleep terrify me as the pain rages unrelentlessly. The days following I can barely walk.

Sometimes life is just unbearable. My health right now is the worst it's ever been. Sometimes the pain is so terrible these days, that I plead with the Lord to take me home and let me leave this life. I am a huge burden on my husband, and only able to do the bare minimum to care for my baby. I put her on the floor in my living room, and watch her play while laying on the couch every day. You have know idea how this breaks my heart.

I am currently seeing a doctor (Dr. Krop in Mississauga) who thinks I have had Lyme Disease (from a tick bite) since the fall of 2003. From hair analysis and other tests, my doctors say I too have heavy metal toxins. I also have candida and parasites. It also looks like I had a dairy and gluten allergy from the time of my birth which has also aggravated my condition. The Lyme Disease diagnosis has been complicated. I already had those other things I listed (candida, parasites, food allergy, toxins), and wasn’t in excellent health to say the least. I was overweight growing up and couldn’t lose weight no matter what I tried. I had tendonitis in both of my arms that was really hindering life, but that was the extent of my difficulties. Then I moved to New Hampshire in 2003. Within a month or two, I was hit with profound fatigue, which later developed into widespread severe pain, concentrated in my lower back. I didn’t know anything about Lyme Disease when I went to New Hampshire. I lived on a farm on a mountain. loved walking in the woods, and sitting in the woods to do my quiet time. I would go out in short sleeves and shorts. Eventually the other people there told me about Lyme Disease. I think by that time it was already too late. I don’t remember if I got bit or if I got a rash, because I didn’t know anything about Lyme. I was always getting rashes, so it wouldn’t be a big deal. And in the woods, pulling off a little bug is every day stuff. Not the kind of stuff I can remember. They sent me home in July 2004 because I was so sick. Some of them told me to see if I had Lyme. I trusted my doctors to find out what was wrong with me and had no idea that Lyme Disease was not known or understood in Canada (it still isn’t). The doctors told me I had fibromyalgia or that I was depressed and gave me no help whatsoever. I went to a Naturopath a couple times, and that helped me realise my gluten allergy. I got a little better (a bit less pain, a bit more energy), but I wasn’t normal. I started going downhill again (though didn’t want to admit it at first). I was cheap, and didn’t want to spend money on holistic doctors, and I was worried to about naturopaths (some of them are a little too new age). Well, I got desperate, and my husband insisted I see the holistic doctor. I saw Dr. Jaconello who did extensive testing, and he is the one who found the heavy metals. Just a couple months ago, a friend of mine was in touch, and after hearing my story, she highly recommended I see Dr. Krop. She has had a lot healing with him. Plus, he really cares, and she says he’s like a second dad to her. Dr. Krop is a retired MD working now as a Homeopathic Doctor. He specializes in Lyme Disease. He used a Vega Machine to test me (it’s a homeopathic device that is about 80% correct). He tested Lyme disease and all the co-infections of Lyme Disease (ticks often carry more than the Lyme bacteria). He also tested me for a wide variety of food sensitivities. I tested positive for Lyme and all of the co-infections but one. I might have been a little wary of the results, but all the food sensitivities that showed were accurate (I’ve pretty much figured out everything I can’t eat on my own). The few foods that came up as a sensitivity were also correct. As soon as I eliminated them, my stomach issues had greatly subsided. Plus, the heavy metal toxicity was positive (just like Dr. Jaconello’s bloodwork showed), and other severe environmental allergies I already knew about tested positive. So I guess the accuracy of this test in other areas made me more confident about the Lyme Disease.

I am undergoing alternative treatments with Dr. Krop. I am also getting help from a Naturopath who specializes in fibromyalgia. I just found her as well. She worked hand in hand with Dr. Alison Bested, MD who has done a lot of research of fibromyalgia/chronic fatigue. Dr. Bested wrote the book Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. I highly recommend this book. She strongly encourages CFS/FM patients to start an activity log, and to re-order their lives so that every activity is surrounded by rest. Rest is feet up and eyes closed. If symptoms are very severe (as they are for me right now), when there is a doctor’s appointment on one day, the day before and after need to be devoted to rest. This has been helping me a lot. It also works on a smaller scale. If I wash the dishes, I rest before and after (sometimes my rest is just sitting down, but feet up and eyes closed is definitely far more effective).

This is the summary of my physical trials. In following entries, I hope to share other ways in which I struggle, give more information about Lyme Disease (it is a growing epidemic in North America), give more information about fibromyalgia and chronic fatigue, share tasty recipes for allergy-free living, offer hope to those who suffer, and offer insight into how we as a church can be showing mercy to those in need.