For further Lyme awareness I thought I would do similar in a more personal way on my blog as well. It may be hard to truly realize how much this disease can change your life and how devastating it can be if you or someone close to you hasn't been struck by it. So I am sharing this to show you some of the ways mine and my family's has had to change as my blog seems to reach more people than my limited ability and strength I currently have to advocate.
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This is what I'm fighting for:
Going on day trips with my family. I have very poor physical endurance due to fatigue and muscle weakness so I can no longer walk for long or be in the sun for extended periods of time.
Hiking and exploring, jumping, walking up and down 1,001 steps! On my bad days I often have to crawl to make it up the one flight of stairs in my house, or call Kyle to carry me up.
Walking 5-7k around Birds Hill Park... in flip flops... never thought twice back then!! Running. This one was very hard to give up. After pushing past many roadblocks and making it to 10k I was training for a half marathon Summer 2014. Spring 2014 my health spiraled downhill and I had to quit. Now walking and standing for longer than 15-20 minutes is hard for me.
"Many are the plans in the mind of a man, but it is the purpose of the LORD that will stand." Proverbs 19:21
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| Lucas: one of my best running buddies! |
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| Running with Laura <3 |
Skating, snowmobiling and sledding. We used to take turns skating with Lucas and holding baby Brandon :). I now need to stay behind at home during most winter activities.
Laughing so hard I might pee my pants! I now experience such horrible pressure in my head when I laugh. It feels as though the back of my head is being pushed into itself and I see black, experience ringing in my ears and shaking in my arms.
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| My wedding day <3 |
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| This is embarrassing, why am I sharing? |
Enjoying a glass of wine around a fire. Being out in the evenings. Even a little alcohol gives me exaggerated symptoms of dizzyness, nausea etc. Evenings are usually the worst time of day for me so I am not often out anymore.
Camping! We are heading into our third Summer of not being able to take vacation as I am so limited in what I can do. This is one of the activities I am most looking forward to returning to some day if the Lord blesses me with improved health and strength.
We continue to rely on God, He cares and loves and is the source of our strength for each new day.
Psalm 62: 11-12 "One thing God has spoken, two things have I heard: that you, O God, are strong,
and that you, O Lord, are loving. Surely you will reward each person according to what he has done."
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Lyme Disease Facts:
Taken from http://canlyme.com/
- Myth:
- Lyme-infected ticks only live in rural parts of Canada.
- Truth:
- Lyme disease is present in most of Canada. Although Lyme infection is more common in rural areas, residents that live in urban areas are also at risk for infection. It is the migratory birds, robins and song sparrows etc. that bring this disease in each season.
- Myth:
- All Lyme victims develop a “bull’s eye” rash.
- Truth:
- Although rashes are fairly common, only 30% of Lyme patients report experiencing a rash, and only 9% develop the classic “bull’s eye” rash.
- Myth:
- I was tested for Lyme disease at the provincial lab and the results were negative. I guess that means I can't have Lyme.
- Truth:
- Actually, that’s untrue. Evidence suggests that Canada’s Lyme testing methods are flawed. False negative test results are common, especially in the early stages of Lyme. It takes time for antibodies to develop, so early tests often miss the bacteria. Contrary to bureaucratic statements, late stage Lyme disease antibody testing is much less accurate.
- Myth:
- Lyme disease testing has a ‘gold standard' in Canada.
- Truth:
- There is no universally accepted test for Lyme disease. Every lab test has its advantages and disadvantages, but overall Lyme tests in Canada are largely flawed. Other labs recommended by CanLyme are all certified and accredited, run by PH.D's who simply refuse to follow flawed testing protocol. Canada has no mechanism for better testing due to bureaucratic controls that are influenced by for-profit players, and not victims and their experts.
- Lyme is known for antigenic shifting, so antibody testing isn’t always effective.
- PCR tissue and fluids tests are available for various tissue. A
positive PCR is highly accurate. A negative PCR only tells the
scientist that they did not find evidence in that sample. Another
sample from the same patient from a different location may be positive.
- Myth:
- If the patient doesn’t look sick, they can’t have Lyme disease.
- Truth:
- As with other illnesses, it's possible to be very ill and outwardly look fine. Very low energy levels, neurologic and brain dysfunction don’t often change a person’s appearance. Family and friends are sometimes hard on victims simply because they don’t look sick.
