Sunday, November 30, 2014

Increasing in Strength

With great thankfulness I am able to report that I am increasing in physical strength!  I have been working on physiotherapy and spending time on my recumbent bike every day for the past 7 weeks and I am noticing a huge improvement in my physical stability and strength.  In the past these exercises have induced further exhaustion and fatigue rather than improving my abilities so I am cautiously excited as I begin to notice my endurance increase weekly.  I find I am able to push my body where formerly I could not, and enjoy the challenge of again working the muscles that have wasted - this time my determination and diligence is producing results!
I have also been able to walk with much more stability than before and can keep up a fairly good pace as I do a daily walk around the neighbourhood!

The children are enjoying doing more physical activities and are so excited to see the results of the many months of treatment!  We are enjoying doing some more 'normal' activities together.  I got a little ahead of my abilities when I kicked the soccer ball around with Damon and strained my hip and knee joints but with rest and care I am fine again and am reminded not to let my heart coax my brain into allowing me to do something before my body is physically able....

Unfortunately,  I have also been experiencing an increase in muscle cramping on the left of my spine, from my neck down.  My left side has been weaker over the past few years and seems to be flaring up again - including my MCP (thumb) joint, requiring bracing from time to time.  I need to schedule rests during the day and use heat packs to relieve the rock-hard knots that are forming in my thigh, back and neck muscles.  Today the muscle twitching returned, this time for most of the day in my left abdomen - wearing my body down with its incessant flickering.

After two improved weeks and a welcome relief from Bartonella Brain, by this afternoon the heavy 'brick' brain fog has returned, and with it the crazy feeling of being so very easily overwhelmed with thoughts, people, chatter, children, noise.  An acquaintance with Lyme disease has likened the mental shut-down and overload that follows to something like the way one with autism would feel - which is why I seek quiet and peace to ease the pressure and stress... I am hoping and praying the pressure in my brain and the increase in physical pain and exhaustion are caused by herxheimer die-off from treatment or the remaining Lyme continuing its cycle through my body.  These are Lyme symptoms so I am trusting that in continuing my treatment regime they will not remain for long.  We have just begun to integrate our two youngest children back into home full-time and it would be very disappointing to have to give them up again.

Jer 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Footprints in the Sand

My niece reminded me of this poem the other day.
It has had special meaning for me over the years.
It is good to be reminded of the Lord's love and the special attention He pays to each and every detail of our lives....

Luke 12:7 "Indeed, the very hairs of your head are all numbered. Don't be afraid; you are worth more than many sparrows."

One night a man had a dream.
He dreamed he was walking along the beach with the Lord.
Across the sky flashed scenes from his life.
For each scene, he noticed two sets of footprints in the sand:
one belonging to him, and the other to the Lord.

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.
He noticed that many times along the path of his life
there was only one set of footprints.
He also noticed that it happened at the
very lowest and saddest times in his life.

This really bothered him and he questioned the Lord about it.
"Lord, You said that once I decided to follow You,
You'd walk with me all the way.
But I have noticed that during the most troublesome
times in my life, there is only one set of footprints.
I don't understand why when I needed You most
You would leave me."

The Lord replied, "My son, My precious child,
I love you and would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."

-- Author Unknown

                                        ....enjoying a summer bbq with friends

An Appointment in Plattsburgh

It has been a week now since my appointment with Dr McShane in Plattsburgh, NY.  The trip was exhausting for me, both physically and mentally - although physically I noticed quite a significant improvement from how I managed the journey six weeks prior!  When I get discouraged because of slow progress, it is helpful to remember a point in the past and notice the ways I have improved since then....  On the journey in September  2014 I spent almost the entire trip lying down on the back seat of the car, this trip I was able to sit/recline - although with increasing discomfort because of bloating and muscle cramping - even for the additional 6 hours it took us to get home because of a snowstorm! This is significant indicator of my increased strength.
The roads became slippery and traffic stopped to a crawl from about an hour past Toronto on-wards...We had been watching the weather carefully because of the massive snowstorms experienced in Buffalo during the days that we were travelling.  We were praying for a safe journey and so thankful for the blessing of arriving at home without incident.  
Ps 121:8 "The LORD will watch over your coming and going both now and forevermore."

I traveled with Jeanne from the Lyme Clinic in Hamilton and enjoyed spending time getting to know her better.  Jeanne 55, also suffers from Lyme disease and is two years into treatment, about 90% recovered....Without the support of family or a church community to help with physical and financial needs, Jeanne struggles with the effects of Lyme on her health and it has devastated her financially as well as strained relationships with those close to her.  During her appointment with McShane, she learned that she has to go back on treatment (she has been off of antibiotics for two months) as some of her symptoms are flaring up.  Due to the lack of financial support or recognition of this disease and treatment in Canada, this news caused some stress for Jeanne.  Jeanne is one of many in Ontario suffering because of the financial burden and physical debilitation that Lyme disease causes.  The strain and hardship of the lack of financial and physical support, alongside the symptoms of the disease itself create terribly difficult situations for those suffering with Lyme Disease in Ontario.  I am blessed beyond measure - to belong to such a godly, giving Christian community where my needs and the needs of my family are so abundantly taken care of! I am obviously in no position to help out in my current state but Lord willing, in the future I would like to find a way to pass on the love and charity that I have received, as well as the hope and comfort of the gospel to those who are affected by Lyme in our local area.....It is so hard to watch people suffer without the support they need.
Phil 4:19 "And my God will meet all your needs according to the riches of his glory in Christ Jesus."

For the three days the journey took, I was about half an hour with the doctor and all I remembered was that she is happy with my progress.... I myself have noticed an increase in strength and stability and was able to give the doctor a good report.  Because I am beginning to improve so well, we will not be making any changes to my medication or supplement routines, with the exception of adding some digestive support and sleep aides.  Due to exhaustion, lyme brain and lack of co-ordinating my file on the part of the nurse, I left the appointment in a bit of a daze and unsatisfied, not knowing what just went on and with many unanswered questions that I had so carefully prepared.  I was not able to take in much at the time of the appointment but I have access to an online patient portal so I am able to have contact with the doctor that way if I have any concerns.  It is State law that I must have an appointment in person every six weeks because I have a picc line so at least we accomplished that.... 
 My stomach did not do well with hotel food - I am not able to digest food without the assistance of lots of digestive enzymes and despite taking enzymes like they were candy, I experienced increased inflammation and bloating.  Culprits? Salad (which is harder to digest), more nuts than usual as well as non-organic or gluten free vegetables, meats and seasonings.  A reminder to be very diligent with my diet!  Cheating in any way causes too much extra stress on my body.... Unavoidable on a journey such as this but it did take a number of days for my digestive system to re-stabilize after the trip.

Monday, November 24, 2014

Lyme Disease Feature - Australia


It's 10:30pm. You're lying in bed with the television and lights off, your cell phone off, with the battery possibly removed, and in good spirits and adamant that tonight you will get a good night's sleep. But before you know it, it's 1am in the morning and the only thing productive you've done since hitting the sack is think about how you can't fall asleep no matter how hard you try.  That was me tonight.... I have been up and about, and wide awake ever since, even though I am exhausted all day and desperately need sleep for my body to heal....

Insomnia. It's the only symptom of Lyme Disease that doesn't occur while a person is sleeping. You might need a second to take that one in. Insomnia includes not just an inability to naturally fall asleep, but sometimes also the inability to stay asleep for the entire night. Not everyone with chronic Lyme Disease experiences insomnia, and some experience it at different intervals throughout treatment. The cause for each individual's insomnia can be different, and even a combination of factors. It's a very familiar pattern - sleep (or in my case exhaustion but inability to nap) all day and stay awake all night. More information on the causes of Lyme-induced insomnia can be found in Dr. Richard Horowitz's book "Why Can't I Get Better: Solving the Mystery of Lyme & Chronic Disease".  
Personally, I have found a way to fall asleep most nights lately - 10mg Melatonin, magnesium, lyrica (for muscle pain), double dose herbal sleep aide, hot packs on my cramped muscles and about a paragraph of a book.  What I have not discovered is a way to stay asleep or gain restful sleep.  I consistently wake around 1pm and then again by 3:30/4am, at which time I am done sleeping for the night and may as well get out of bed.  If I miss the opportunity to fall asleep at night because of ie. stress, over-tiredness, lack of winding down, muscle pain, headache/brain heaviness or digestion troubles I will remain awake for the entire night.  At a certain point I admit defeat and try to achieve something with my night so that I don't feel so bad when I am wandering around in a daze and not able to accomplish anything the following day.

Insomnia doesn't mean you don't need sleep
It's foolish to think that just because you're not tired, your body doesn't need or desire that all important rest, or that the body itself somehow chose to stay awake rather than sleep. The body is under the influence of a bacteria, and possibly other pathogens, that greatly influence its own chemistry. So it's not the body that doesn't want to sleep, but rather the body under the influence of pathogens giving the illusion that sleep is not desired or needed.

Sleep is essential for healing from chronic Lyme Disease
In the end, it's going to be the immune system that puts the final nail in the coffin for those who heal from chronic Lyme Disease. A good antibiotic will kill the pathogens it was designed to kill, but it will be up to the immune system to not only do the same, but also removes the toxins left over that cause chronic inflammation (i.e., symptoms), and to ultimately keep the bacteria at bay and suppressed. Once the Lyme bacteria is suppressed and the immune system has complete control, then grounds are created for a person to be asymptomatic or achieve remission. Sleep deprivation directly results in an even more compromised immune system, and when the immune system is down, the pathogens are up.

Sleep medications have been unsuccessful for me as I have battled with insomnia and lack of restorative sleep over the past few years.  I have tried several prescribed versions and they have had an opposite effect in my body, causing my brain to work even harder to overcome the buzzed feeling that they give me.  An interesting study at the sleep clinic, conducted two years ago when I was struggling with severe insomnia, showed my brain activity was creating arousals about every 5 minutes.  Either the pain or what we now know is lyme disease has been keeping my body and brain on high alert! 

Because of the importance of sleep to my recovery, Dr McShane (LLMD) has suggested I go to bed as soon as I become exhausted in the evenings - aim for 9:30 lights out.  I may be able to squeeze in a couple more hours of sleep by going to bed earlier every night.  I am up for trying anything at this point so if you are unable to get hold of me after 9pm, I have probably turned off my phone and am winding down and going about my sleep inducing routine! of the information in this blog post were taken from a posting on the hamilton region lyme alliance (thanks Jeanne...)

Tuesday, November 11, 2014

Bartonella and Bad Behaviour

This is a difficult post for me to write.

I am struggling to find a balance between being godly through this trial and not feeling guilty over things beyond my control.
I am struggling with bad behaviour.  My brain feels like it is heavy and I am very easily overwhelmed when things get loud, disorderly or stressful around me.  I am short tempered and have found myself yelling at my children or my husband and then sobbing immediately afterwards with remorse for how I am treating them.  I have asked God to help me with this, to give me peace and calm in my brain.  So far, He has chosen not to do so and I am noticing the symptoms in my brain getting worse.  Apparently  (some of?) these symptoms are caused by the co-infection Bartonella, which infects the brain.  We are not currently treating Bartonella directly, but as the other infections are getting attacked, Bartonella has the opportunity to become more active.  I am not able to hold long conversations without getting exhausted and feel a very strong urge to take a nap after attempting to read a story to my children.  So I get frustrated, and irritated at them during an activity such as reading that I formerly enjoyed participating in.  I love reading.  I always have.  I now read a paragraph at night to induce sleep.....Need another example?  I became frustrated the other day while doing a craft with the kids because they were requiring too much of me and asking for my help when I had no strength or energy left to give. I have always loved doing crafts with the kids, and the joy that it brings them makes all effort worth it.... or so it used to be.....

So - where does my responsibility to act in a Christian manner begin and end?  What can I blame on the Bartonella and the affects of treatment and what is simply sin that needs to be uprooted?  We are told in the James 4:1 "What causes fights and quarrels among you? Don't they come from your desires that battle within you? You want something, but you don't get it (or you get something that you don't want)" 

 I recognize my desires - to have peace and quiet, to be done with this disease, to rest and recover, to be free of the responsibility of taking care of myself 24/7, to return to 'normal' life and eat and drink things that I enjoy, to socialize again, to sleep properly, to have physical strength and energy....etc.... This means, in the instances when I behave badly, I am not getting what I want, and my response to not getting my way is producing a crop of thorns in my life.  I am thankful there is unlimited forgiveness for a sinner like me...
 "If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness." 1 John 1:9

Please pray specifically for my family and I, that we will receive grace to accept all aspects of this disease from God's hand, and that I may respond with love and patience when things become overwhelming for me.  It tears me up that my children and husband are suffering because I cannot seem to control my bad behaviour.  If I ever had trouble pinpointing sin in my life, I certainly do not now.  Lord, please forgive me, and let me begin each hour anew (I have shifted from needing daily strength to hourly or per minute strength...) Another lesson, God is at work here.....                                                  
                             Thank-you for all the encouraging cards you have sent!

"Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing, so that also at the revelation of His glory you may rejoice with exultation.…" 1 Peter 4:12

My beautiful fairy princess turned five this week.  Happy birthday Alanah!!

Basic Diet = LOW (lots of work...)

With thankfulness I am noting some slow improvement in my physical abilities lately. I was 'crashing' and spending a day on the couch about every third day a week ago and this past week I have only had to spend one day recovering (today is my second).

For some reason I am always hungry and continue to lose weight.  I have been trying to focus on strengthening my core through physiotherapy and exercising on my recumbent bike 3 times a day when at all possible....

Sleep continues to be huge issue for me.  I mostly manage to fall asleep but am awake consistently at 3:30/4am and do not fall back asleep after that time.  Often I wake up once before this time as well.  This only gives me about 4 hours of sleep in a row, which is not enough to be restorative.  Sleep is very important to healing so I will be trying some different sleep aides (again...) to see if I can find one that allows me to get into a deeper sleep. What a blessing sleep is - another thing we take for granted when it is not an issue in our lives!

I am still struggling to control the swelling and bloating which is caused by digestion problems and an overgrowth of yeast in my intestines again.  I am back on medication to control Candida, and I have completely cut out fruit and sweeter vegetables until I stabilize again....I don't think my digestive enzymes are working so I will be looking into switching types and see if that helps control the inflammation a little better.

The basic diet is going well - I am constantly hungry which causes a lot of extra physical work as each meal has to be cooked from fresh produce.  I am slowly figuring out a routine and with the help of friends I am beginning to prepare and freeze as much food as possible in advance so that my days are not overwhelmed with preparing and consuming food.

 Multi-tasking. Preparing my almond milk and cutting up vegetables while administering IV antibiotics

Almond milk must be made from scratch as I react to the guar gum and sugars found in commercially prepared milk.  1 cup of soaked almonds will produce 2-3cups of almond milk and 1 cup of almond flour which can be used to make my 'bread' so it is well worth the effort!