Guilt

June 24th 2014

I am beginning to feel guilty as it sets in that this treatment will very likely provide a cure for me.  There are several reasons for this guilt. 

1.Why do I doubt God's love for me?
I have been confused about the way God works and have had a heart of unbelief in some of God's attributes.   I have not believed God to be a loving Father but began to view Him more as a harsh disciplinarian.

I trust that all things work for the good of those who love Him.  

"And we know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28

My struggle has been that I have not felt that God is concerned with our happiness here on earth but merely making sure we learn all of our lessons so that we become spiritually mature.  

"These (trials) 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 honour when Jesus Christ is revealed."  1 Peter 1:7

There has been a niggling doubt in the back of my mind these past years that God would want me to be healed - I felt like I was ok with that but began to wonder what other things He was going to take away from me.  I realize that I never expected kindness in the form of healing (for my relationships or my health) from Him.  God is proving (to my shame) that He is able to do abundantly more than we can hope or imagine - not just eternally but also in this life when it is within His will.  

``Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus, throughout all generations, for ever and ever!`` Eph 3:20

  2. Why has He given me the opportunity for healing, why now?
So why does He choose for me to have the hope of healing now (at the same time not granting it to others who long even more fervently than I did for healing)?  There are many others for whom we continue to pray for God to grant the mercy of healing and relief from suffering.  I have not arrived at an answer but I will share with you a little of what I am learning.  I would also recommend for those of you who are suffering and searching to take a peak at the books I have listed on this blog.  You will find them to be helpful and encouraging during your times of struggle as they point you upward and forward.  

An age old question - WHY? The mystery of suffering has been a question that has plagued believers for many years.  We are given a glimpse into the questions of the human heart during suffering in the book of Job. Gods answers are also very striking..... For now, from our limited view we need to be content to rest in the capable hands of an Almighty Father. I heard recently that God will only give us what we would have asked for if we knew everything that He knows.  That is why we go forward and continue to battle on with trust and faith that the One who started a good work in us will complete it, to His glory.  

We know why God sends trials - "And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us." Romans 5:4-5

We know WHO God is:  It is hard to believe sometimes that God is fully in control of every detail of our lives and has our best interest in mind.  We can believe it because we know, believe and trust in the Character of God.  God is Sovereign over every aspect of our lives. When we lead with our knowledge of God instead of our feelings about our circumstances we are much more confident to rest in His Sovereignty.  

We learn to trust when we do not feel:  I have learned that Joy, Peace and Contentment are not based in feelings but rather in knowledge.  We are not given a map of God's plans and purposes but we know for sure from His Word that His ways are far above our knowledge, His paths beyond tracing out.  We also know that He is Good, Kind, Loving, Merciful, Compassionate, Abounding in Love.  We cannot rely on what we experience or feel to be the judge of what is right and true.  So when we lose our hope and doubt that God is actively at work in our circumstances, we need to engage our faith to trust in our knowledge of WHO God has revealed Himself to be in His word.  Because we trust His word, we can also trust the promises that He has given us, especially during times when we don`t feel His nearness or His love.

``May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.`` Romans 15:13

God has a plan in my healing also - I am not sure yet what or why.  May He give me the grace to be worthy of the gift of renewed health! Immediately I realize that I will never be worthy of that either, but may Gods grace through Christ continue to cover for my ungratefulness should I become accustomed to the joys of health and physical strength and ability.  I am excited for the new direction this possibility of health steers me in.  May it be for God's glory and the benefit of others and not my own pleasures, advancements or pride.

Please pray for a blessing on this treatment.  The side effects of treatment are nasty but bearable.  I understand that this could be a long process (average time before remission is about 2 years) and it could re-occur again in future years.  For now we are again reminded to take one day at a time.  God's has promised that He will provide daily for the needs of each day.

With love and thanks for all of your prayers, help with sitting and meals, finances, driving me to and from appointments (been so nice to have the company of my niece Nic) etc. etc. etc.

Roze 

A Diagnose - Letter to Family & Friends

June 24th 2014

Dear Family and Friends,

By now many of you may have heard that I have been diagnosed with Lyme Disease.  For the past couple of months I was struggling with breathing due to weakness in my rib cage.  This led to further weakness and extreme fatigue and in the weeks before I sought treatment I was going steadily downhill - struggling to breathe, napping often during the day and barely able to walk again.  I went to my doctor in Canada several times struggling to breathe but she was unable to help as she has exhausted our resources in the medical community here.  It was a scary time for us but we had already sent away bloodwork to America for testing at a lab there so we had an idea that this may be Lyme Disease.  I had been tested under Canadian standard testing over a year ago for Lyme but my test returned negative so we assumed I did not have Lyme.  Eric was reading an article in a magazine about the inaccuracy of the testing that is done in Canada, and how it only catches approx. 30% of cases.  It prompted me to do more research and find out which test I had taken the past year.  As soon as we discovered it was the flawed Elisa method of testing we immediately sought and paid for a blood sample to be sent to a reputable lab  (IgeneX) in America for testing.  

The Lord guided things in such a way that we had a contact through Damon's former kindergarten teacher who was able to put us in contact with a Lyme Literate Doctor in the States.  As I was struggling so much and going downhill so fast she got me in for an appointment the following week.  My blood work results had returned by that point and I tested positive for Lyme Disease (by American standards - not Canadian...)  Coupled with my symptoms it was obvious to the doctor that I have Lyme so she began IV antibiotics immediately after our consult last Tuesday morning.  For added confirmation, I faxed the president of the Canadian Lyme Foundation to take a look at my bloodwork and there was no doubt in his mind that I have Lyme disease.  

It has been a week now since I have started treatment for Lyme disease.  I have been travelling back and forth to Buffalo USA almost every day.  It has been a whirlwind week - I was fitted at the hospital with a picc line - a direct line to my heart through my arm so that I can be treated intravenously without having to re-administer the IV line each time.  This also allows me to administer the IV myself at home over the weekend or days that I do not need to be in the clinic.  The doctor suspects that I have co-infections (commonly connected with the Lyme bacteria) so we have sent away further blood work to see if we can identify which ones I might have and treat accordingly.  We have also discovered that I have become lactose-intolerant (also apparently a common co-condition of people with Lyme).  I have to adhere to a very strict diet - no gluten, sugar, fungus plants (ie mushrooms), milk or milk products, alcohol (sigh....) or fermented products.  The Lyme bacteria feeds off gluten and sugar so we want to stop it from growing as we kill it off.  The diet is not a stretch for me as I enjoy salads and the plain taste of fresh food anyway.  Cappucino's, chocolate and wine I will miss....

My immune system is repressed - which is why I have had so many reoccurring infections in the past couple of years, my adrenal glands are not functioning properly (apparently I always sit with my legs up to prevent myself from passing out or falling off the chair! - I always thought I did this because I was uncomfortable but it is an unconscious and automatic response of my body) and I have very low blood pressure (even lower upon standing up - causing weakness and dizziness...)  The little Lyme spirochete have certainly been busy little fellas!  The doctor is confident that with a multi-system approach to treatment I should be able to return to health again - thank-you Lord!

Treatment consists of IV antibiotics, IV vitamins and supplements, 5 other prescription antibiotics, approx. 20 probiotic and vitamin supplements and 5 homeopathic remedies.  As they all need to be taken several times a day and at intervals from each other, taking medication has taken over my waking hours lately.  I am hoping this will only be temporary (no longer than 6 months or so).  I have worked out a 1/2 hourly schedule which works to follow and allows medication taking to become more automatic and less of a thoughtful effort. 

I have also done UV light therapy on my blood.  This therapy boosts my suppressed immune system.  The doc was hoping that I could have this done 2X each week but as my herx (bacteria die-off) reaction was so bad (this is a good thing - means my body is responding to treatment!) she has scheduled it for once a week instead.  We need to detox my body daily and weekly so that the dead bacteria is removed from my system.  I also went in a high-pressure oxygen chamber three times last week for about 1.5hrs a time but because of fluid behind my ear it was no longer safe.  

I am injecting myself once a day to clear up my allergic reaction to milk, which should in turn decrease the fluid in my ear.  In about two weeks I will be able to try the hyperbaric chamber again, Lord willing.  I would like to do this therapy as it returns noticeable energy to my muscles and joints and allows me to walk better, as well as relieving the pressure of my ribs on my lungs.  It should speed up my recovery process.  I experienced a high amount of pain in my muscles while in the chamber on my last day.  The doctor has also attributed that to a 'herx' reaction, which is expected at this point in my treatment. 

Since I began treatment, my ribs have relieved much of their pressure on my lungs and I am able to breathe properly again.  I am also beginning to feel a return of energy and spark (watch out world!)  I have been struggling for so many years, it is exciting to feel a return to my own body - my legs are beginning to feel attached again!  I forget how I used to be - I have had a glimpse (especially today) of what things could be like as I continue to improve and I am very excited about that possibility!  I am already making plans about things that I would like to become involved in again and the ways I will be able to better take care of my children, husband and home....slow down Roze!!  May God not let me forget the lessons I have learned from this experience and continue to remind me to take one day at a time.

 "Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own." Matt 6:34

How do I manage physically?

 CROUCHING: I crouch down whenever I am too weak to stand.  I can't stand for more than a couple of minutes at a time before I start wobbling at the hips and knees and have to hunker down.  I did a lot in my home at floor level, including crawling up the stairs or around the upstairs to get from room to room.  I would also sit on my walker and push it with my feet when I was too weak to walk.

Playing Totem Tennis with my niece 

 I would have to crouch in the grocery store or retail store if I was sorting out what to buy, checking ingredients or deciding on clothing purchases.  I would also hunker down if I had to wait in line for more than a couple of seconds.  I realize I must have looked a little odd but I had no choice - I had limited energy and strength and could not afford to waste any second of my precious standing time!

....Giving a little demo to my family in AUS on how to make s'mores.  Mmmmm....

 SITTING: On a cushion - I can't sit on anything hard or slippery as I do not have the strength to hold my body in the seat.  It is also painful on my hip bones - I feel like they are protruding when I sit down.

 The best chairs had wheels on them, that way I had a measure of independence without using a cumbersome wheelchair!

I wanted so badly to still be an involved mum to my kids.  I would try to find ways to improvise with my disability so that we could still enjoy some of the things that I used to do with them.

I wasn't able to carry Tyson but there were still plenty of opportunities for snuggles with my kids!

My legs are always crossed in some way when I sit or lay down.  Not sure why that is....

 LOUNGING: Unable to sit for very long because of fatigue and joint/muscle pain, I found the zero gravity chairs to be a must have when out and about.

 LYING DOWN: My favourite! Lying down was the most comfortable position for me - I would crash on the floor when fatigue came on suddenly.

The couch has been well-worn during these past few years.....

 My mum and my sister made a prayer quilt for me to let me know that they were thinking and praying for us often... xox

 The kids would try to make me feel 'all better' by making me look absolutely stunning with all of the 'pretties' that they could find in the house!  How many mums have time for this?

 My legs always had to be up and/or tucked under me.  The doctor now told me this is a sign of adrenal malfunction....I could not balance on a chair without drawing my legs up.  Because of my constant low blood pressure she said it was my body's natural protection mechanism to keep me from fainting.

 Eric did a very good job of breaking his leg and required surgery.  Now there were two of us lounging on the couch! What a disaster....

WHEELCHAIR: Only when I absolutely had no other way of getting around.  That cursed pride I continued to hang onto..... It was worth succumbing to a wheelchair when there was no other way to go out with friends!

A pelvic brace, knee braces and a cane gave me a little extra stability - extending my period of standing time and allowing me to push my body a little further.  My knees were often swollen behind the joint as a result of laxity overuse and hyper-extension to compensate for the lack of pelvic stability.

WALKING: This was a familiar scene when I attempted to go for a walk.  About 100 meters away from our home I would have to give up and turn around and go home before I crashed and became unable to walk any further.  If I was walking with others I would wait beside the footpath so that I could return with them on the way back....Obviously this was frustrating for me - I used to walk through town with the children every day, puttering to the library, the grocery store, the park and Tim Hortons.

STANDING: I could stand but it had to be in short bursts and with legs apart for added stability - like a tripod without the tri... I found I could last a little longer if I rocked from one leg to the other, engaging certain muscles that were willing and able to work to compensate for the lack of stability in my core and hips.

Hanging onto things or leaning was another way to prolong my standing time.

Awkward!!

EFFICIENCY:  I learned to become super efficient with my time.  I allowed the children to help out whenever they had the urge - anything that got cleaned was better than nothing!  I only had a limited amount of energy so I tried to do things as quickly as possible before I crashed.  Apparently that is not the best way to recover, but resting didn't seem to help either.  It was all a game of guessing really..... If I knew what I had to do to recover I would have done it.  We were all wandering in the dark.....

I did as many things as possible at floor level. (maybe not the most hygienic but still just as much fun...).  I even have a tabletop ironing board that can be used on the floor!

In the last year before diagnosis I developed severe weakness and pain in my MCP (thumb) joints.  I wore braces to give me functional stability but was unable to play my guitar anymore.  It was too difficult and painful to push down on the neck of the guitar - my thumb collapsed around it and I didn't have strength to hold down the strings.  That was devastating for me.  It felt like God was taking away one last pleasure that I still enjoyed.... This too was His will, so I put away my guitar and tried to enjoyed music in other ways. 

I wrestled with what God was doing in my life.  I could relate to Job and how he felt during his sufferings.  I had so many questions that didn't seem to have answers.  The book of Job was so helpful in putting it all into eternal perspective.  How could I demand answers of a sovereign, all knowing, all caring, powerful Creator God? 

 "Oh, the depths of the riches of the wisdom and knowledge of God! How unsearchable His judgements and His paths beyond tracing out!" Rom 11:33  

I had many unanswered questions, fears and stresses but determined to rest in His providential and Fatherly guidance.

Life before Lyme:

Regular trips to Australia to see my family.....

..... as our families expand

 Camping - I love the outdoors.  Closer to nature the better - hence the unwillingness to give up tenting despite the rainy Canadian summers.....

I loved playing and singing for people - especially the elderly , children and handicapped who receive such joy from the sharing of music.  

 Always a risk-taker.  Enjoying the adrenaline - not sure I would repeat today.  I have since gained a respect for the limitations of my body....I think....

 Summer! My favourite months - best things to do? Attending festivals, wine tasting, enjoying company of friends, entertaining, hosting campfires.

 Skating (and trying my hand at ice hockey).  I was successful at skating but not so much at stopping.  Not as easy as it looks!

 Snowboarding! My favourite part of winter, to be sure...

 Fresh powder, frigid, crisp air, numb face, relaxation....

My favourite summer sports - Wakeboarding, soccer, swimming

 

Working at Anchor Home - I loved this job and the wonderful people I was privileged to work with...

Hiking - Fall is so gorgeous - crisp, clear air, beautiful colours.  Hiking was almost a weekly occurrence for us in the spring/summer/fall months.

 .....standing (for as long as I wanted) and walking (as far as I wanted to go)

Life was busy.  We were happy.  Our family was expanding, we were involved in our local church and community.  No time for slowing down......

"Many are the plans in a man's heart, but it is the LORD'S purpose that prevails" Prov 19:21

Battling an Unknown Disease

In April of 2011 I was 7 months pregnant and began experiencing severe pelvic girdle pain, making it very difficult to get around.
I was induced on June 14th, expecting that once my baby was born I could begin healing.....

God had other plans for me and my family.  We were blessed with a healthy baby son whom we named Tyson.  I collapsed the next morning and was unable to stand, weight bear or walk.  After some frantic investigations that yielded no results, I was sent home in a wheelchair, with a walking frame to assist me. Needless to say this was a very scary experience for us....

 From that point on it was very much a 'manage the symptoms' course of treatment, as specialist visits, MRI's, EMG's, x-rays, ultrasounds, bloodwork yielded no clues to what had devastated my body and bedridden me.  With three very young children, there was no though of succumbing to my physical disabilities.  I was assigned an occupational therapist and a physiotherapist who signed off after 6 weeks as I was not making progress in recovery and didn't seem to be in any imminent danger...  I was not allowed any government assistance with my house or children because I did not fit into the correct age bracket for a disability such as this - I would have had to be under 18 or over 65 to receive care in my home.   Without the help of family, friends and members of our church I am not sure what would have happened to our family. 

 So I wondered, why would God allow me to become so physically disabled that I would be unable to take care of my own children?  He had assigned me the task when He made me their mother - what could He possibly have in mind to turn this situation into good? 

"For we know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28

 I kept Tyson and all the supplies needed for his care beside my bed.  I did not have the strength to carry or walk with him. 

 We had so much care immediately from our church community.  That has been for us one of the most amazing outcomes of this battle - to see so many people reaching out and giving support and encouragement according to their talents and abilities!  Our children were well taken care of, happy and healthy.  My home was cleaned, my laundry done and meals provided for me. 

"If one part suffers, every part suffers with it; Now you are the body of Christ and each one of you is a part of it." 1 Cor 12:26

There were also many scary moments - like the time I made it to the kitchen because I was so hungry but collapsed in a heap and had to phone Eric to help me get up off the floor.  It seemed that I would come to a point that I could push no further and would suddenly be overcome with severe fatigue and weakness.  I struggled to take care of myself.  My shoulders were too weak to wash my hair so I sat on a stool in the shower and did it step by step, waiting in between to regain some energy.

Tyson and I spend many precious months together resting in my room and I was given many extra snuggles.  I soaked in time with him.  He was my blessing in the midst of a trial and I am so grateful for the love he gave without knowing it.

 I was determined to beat this thing that had disabled me so severely.  So I worked daily on physiotherapy - the harder I worked, the weaker I became - What was going on!  For the first time in my life, my determination and self-motivation was working against me.  I had lost control of my physical abilities....

 Our wedding text constantly reminded me:

"Trust in the Lord with all your heart.  Lean not on your own understanding.  I all your ways acknowledge Him, and He will direct your path." Prov 3:5 

A higher purpose that I sure couldn't see through my earthly lenses.  Trust took on a whole new meaning for me, and was more difficult than ever.

I was embarrassed of my physical disability and determined not to let it define me.  I do not have many photos of myself using assistant devices during these years as I wanted to be as 'normal' as possible.  I would struggle with a cane when I should have been using a walker and absolutely only used the wheelchair when I was near collapse or we were somewhere where no one would recognize me.  Pride is a difficult thing to beat..... I think the embarrassment mostly came from the fact that I was not receiving a diagnosis and that may have suggested to some people that my disorder was of a psychological nature.

In His wisdom, the Lord had decided to take away something precious to me - my physical strength.  I became completely empty, weak and devoid of strength or determination to continue to battle against my 'thorn in the flesh'.  I knew at my lowest point that feeling of complete reliance on God, for physical strength, and emotional strength.  It was time to let my own self-confidence and self-reliance go.
"Three times I pleaded with the Lord to take it away from me.  But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness.  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.....For when I am weak, then I am strong." 2 Cor 12:8-10

We purchased a recumbent bike as I was unable to sit on a regular bike seat anymore.  My gleuts were losing strength and it was becoming increasingly uncomfortable to sit so I used an air cushion on anything that wasn't padded enough.

 Help came in many forms.  Dear friends (Bernie & Carrie, Brian & Ina) helped with childcare for many long months at a time - dropping everything to come and pick up the children numerous times when I became overwhelmed.  Janette B came daily during the summer months to help with housework and childcare, and Lauren N for the winters.... Thank-you Lord for friends!

 "A friend loves at all times, and a brother is born for adversity" Prov 17:17

My friend from AUS - Tish, came three times in those three years to visit and give physical and emotional support.  God has blessed me with AMAZING friends!  Thank-you for sticking by me, even when the going was rough for longer than any of us would have cared to deal with....

Time with God

I feel the nearness of God in nature.  He is there.  In the expanse of the ocean or lake, the fresh stillness of the morning, the calls of nature, the beauty of creation.  I spent many precious times in His presence by the lake when I felt overwhelmed and discouraged.  Prayer, reading and meditating on God, His goodness, His purpose and His Sovereignty returned quiet to my soul and peace to carry on with the task ahead, unknown as it was.  Thank-you Lord for taking time for me.  I am overwhelmed with His goodness. 

"Rejoice in the Lord always.....The Lord is near.  Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transends all understanding, will guard your hearts and your minds in Christ Jesus"  Phil 4:4-7