Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Tuesday, October 15, 2013

The other half of my story

I know how you feel.  Really, I do!

I empathize with anyone who has ever been sick, and I empathize with anyone who has ever taken care of someone seriously ill.  I've been both the patient and the caregiver over the past 10 years.

I've survived those trials, not just to tell about it, but to hopefully help others navigate the waters, and to give hope and courage and strength to people in similar circumstances.

This blog is mostly about my Lyme disease story, but I thought I'd give you a peek into my role as a caregiver, long before Lyme appeared on the scene.  And the reason I want to share this with you is to let you know what I ultimately learned from this experience.

So here's the rest of my story.....

Ten years ago (2003), when I was 2 months pregnant with my second child, we received devastating news.  My husband, who was 38 years old at the time, was diagnosed with a rare and aggressive cancer called SNUC - sinonasal undifferentiated carcinoma.  The prognosis for this type of cancer is dismal.  We hoped for the best, but prepared for the worst.

As my baby grew within me, I watched my husband endure nasal surgery and a craniotomy, as well as 6 weeks of daily radiation to the head which left him so ill that he was unable to keep food down.  He lost 50 lbs. along the way, but he persevered and survived the treatment, the necessary evil.

Our son was born as my husband was recovering from this medical intervention, and it seemed to be a new beginning for us.  My husband was regaining his strength, which was perfect timing since we had a newborn and a toddler on our hands.  Between breastfeeding and potty training, life was very busy!  Things were looking up, and we knew that if my husband could reach the 3 year mark cancer-free, then he would be considered in remission.  So we waited......and we hoped! 

Two years went by and life was feeling normal again, when my husband suddenly became ill.  He developed a fever one day that just wouldn't go away, and as the days passed, he became more and more lethargic with clouded thinking.  On the 13th day of his fever, I took him to his GP who had him admitted to the hospital for tests since he couldn't figure out the cause.  Neither could the specialists at the hospital.  My husband was given a routine CT scan in preparation for a lumbar puncture (aka spinal tap), and voilĂ ....the scan revealed an orange-sized brain abscess, which is basically a pocket of infected fluid.  My husband had surgery the next day to drain the abscess, and spent the next 12 weeks at home on a PICC line, receiving continuous IV antibiotics.

Over the next 5 years, he went on to develop another brain abscess, at least 6 cases of bacterial meningitis, and seizures, all of which required hospital stays of a week or more, and weeks or months of IV antibiotics at home.  Each illness was life-threatening.  My husband's cancer seemed to be in remission, but it became evident over time that the cancer surgery must have left him with a small hole in the floor of the brain cavity.  This was allowing bacteria into the brain, which was causing the abscesses and meningitis.

Each time he was sick, our family was thrown into survival mode.  Relatives came to stay with us when they could, but sometimes it was just me with my boys while daddy was in the hospital.  I continued to work as a teacher, care for my children, visit him in the hospital each day, and took over responsibilities that were normally his in our household, like managing the family finances, car maintenance, and grocery shopping.  In addition, there were medical decisions to make, medications to organize and administer, and doctor's appointments to get to.  Having lost his licence for six months due to the seizure, I became the official family chauffeur as well!  It was so much work, but somehow, I did it. 

The time came three years ago when my husband's surgeon urged him to have surgery again, this time to fix the problem once and for all.  After a great deal of reflection and prayer, looking at the pros and cons and weighing the risks, we decided to do it.  This surgery was even more complicated than the first one, as surgeons had to transplant vascularized tissue from his arm onto the floor of the brain cavity, to close up any leaks.  The first few days post-surgery were touch and go, and ironically, he developed a case of post-op meningitis in the hospital which doubled the length of his hospital stay, but he made it through.  That was in the fall of 2010.  Since that time, he has had one seizure episode in the spring of 2011, and nothing since.  Nothing!  It's been 2 1/2 years of relatively good health! 

To God be the glory!
These past 10 years have caused me to reflect a great deal.  People sometimes ask me how I managed to keep it together all those years.  My parents often told me how amazed they were that I managed so well during these crises.  But I'll tell you this.....I did not survive under my own power!  God lifted me up, sheltered me, gave me the ability to endure, and gave me the peace that transcends understanding.  He worked through our family, friends, and church to carry our burdens and help us cope.  And all of this taught me a very important lesson: 

God's grace is sufficient for our trials.
Cast your cares on Him, dear readers.  God is love, and His grace is available to you, too, for the forgiveness of sins (first and foremost), for growth in godliness, and for help in time of need.

My husband and I have just celebrated our 20th wedding anniversary, and Lord willing, I look forward to many more years with him.

Monday, October 14, 2013

Happy Thanksgiving!

Wishing all Canadians a very Happy Thanksgiving!  Despite the struggles we face, we must take time to remember the goodness in our lives.  May God bless you, keep you, and guide you on your road to recovery.

Friday, October 11, 2013

Review of "Ticked off - The Mystery of Lyme Disease"

I sat down to watch the highly anticipated (among Lyme sufferers) episode of The Nature of Things on Thursday evening, hosted by world renowned scientist David Suzuki.  We all know that when David Suzuki talks, people listen.  So I was hoping that he would have accurate information to impart to inquiring Canadians.

The episode was well-written, with a very balanced portrayal of this awful illness.  By balanced, I mean this:  Basic, true information was given about how the disease is contracted, where in Canada it has spread, why we are seeing more ticks in our region, what the symptoms are, and how it is ruining people's lives.  The episode spoke about the political nature of the illness, and why physicians are polarized in their opinions about how to diagnose and treat it.  It gave equal representation of the two sides, and perhaps even a little more to those who recognize major flaws in the current treatment protocol. 

The sad part about the whole issue is the lack of scientific studies to back up what so many people, including myself, have experienced personally.  I appreciate what Dr. Harris (LLMD from California) said: "I have to treat these people (with long-term antibiotics), even if the science hasn't caught up yet." 
I'm so thankful for the few Lyme-literate doctors who recognize this as a moral issue, and who go out on a limb for their suffering patients, and in some cases have risked their reputations and practices.
I was fortunate enough to have been able to see Dr. McShane, who was interviewed for this special, in 2011.  She diagnosed me with Lyme disease and possible co-infections.  I don't know what life would be like for me today if she hadn't headed me in the right direction with treatment.
If you missed the episode, you can watch it here.

Monday, October 07, 2013

This Thursday, October 10 at 8:00 p.m. on CBC

Here is an excerpt from the CBC press release, on the CanLyme website:

Lyme disease, a mysterious tick-borne illness, is the fastest spreading vector-borne disease in the United States, and over the past decade, the tick that carries Lyme has been spreading across Canada with alarming speed. On Thursday, October 10 at 8:00 p.m. (8:30 p.m. NT), CBC-TV’s The Nature of Things premieres TICKED OFF: THE MYSTERY OF LYME DISEASE, a fascinating and eye-opening documentary that explores a disease that has devastating effects, is often misdiagnosed and mistreated, and continues to be mired in a medical controversy.

I watched one of the trailers, and Dr. Maureen McShane is interviewed for this special.  She is the Lyme-literate MD who diagnosed me with Lyme disease and headed me in the right direction towards recovery. 

Click here to view an excerpt from the program.

Be sure to watch or set your PVR!

Thursday, October 03, 2013

Financial assistance for 2 Canadian candidates

LymeSAVERS is a non-profit charitable organization started by Kevin Sherriff, a Canadian Lyme survivor.  Like many people who have been afflicted with this illness and have recovered, Kevin wanted to give back to the Lyme community.....or you could say, "pay it forward". 

LymeSAVERS has been fundraising for quite some time, and is now in a position to award a bursary to 2 Canadians who are afflicted with Lyme and who are in need of some financial assistance for their treatment.

If you are interested in applying for a bursary, visit the LymeSAVERS bursary application page.  Applications will be accepted until the end of November 2013.