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When my kids were little this was one of the songs we would sing to them. “If you go out in the woods today you’re in for a big surprise”. That surprise was a teddy bears picnic. Today your surprise could be a tick bite. Not a picnic! I never got the bullseye rash that you hear about. I don’t remember being bit at all. However, we spend our summers at a cottage in Ontario and I get bug bites on a regular basis. I just ignore them.
I used to be in the woods by the hour cutting dead trees down with my little chain saw and pruning trees and raking. I was sometimes in there in my bathing suit on a hot day. It’s easy to get a tick bite that way. I still venture into the forest but I wear a long light colored shirt. I tuck the shirt into a pair of light colored pants and tuck the pants into a long pair of boots. I check for ticks when I come out and try to go for a swim or shower right away to get rid of anything I can’t see. I haven’t seen any ticks but I’m not taking any chances. You can spray deet all over too.
It’s important not to be bitten by a tick or to deal with it as soon as you are aware of it. I missed seeing that little tick and it pains me to think that I could have been treated with just two weeks of drugs, instead of the very lengthy course of antibiotics I’m now on.
Everyone is different but here are the things that really encouraged me and worked well for me in dealing with this complicated disease.
1. People that prayed for me and repeatedly told me they were praying for me.
2. Being around positive people. I’ve always been this way but even more so now. Anything negative lingers with me and can bring me down long after the giver or that negativity has moved on. I just don’t need to be around it.
3. Talking to other people that had Lyme Disease and learning from them and realizing that you’re not alone.
4. Focusing on getting better and not what was hurting on any particular day.
5. Allowing myself to make one complaint a day. Just one! It’s hard but it takes the focus off the pain and shifts it onto getting better.
6. Having a special person to encourage you. Mine was my cousin that lives in Vancouver and even though I live in Toronto she was able to phone, send cards and thoughts that encouraged me. Often her cards contained a little metal angel. I placed one in my purse and one in my medicine carrier.
7. Making a chart for my medications. It is far too hard to remember when to take what. The chart and meds go with me when I travel or visit friends.
8. Listening to my Lyme Literate Doctor (LLD) and following her instructions.
9. Sticking to my diet: no sugar, yeast, flour, vinegar,….etc. This takes lots of will power.
10. Carpe Diem – Seize the day if it is a good one and just kick a bad day in its sorry old butt.
11. Being grateful for friends and family that were supportive. They understood that on a bad day there was little I could do but on a good day I could go out for lunch or have a short visit.
12. Reward yourself everyday. My guilty pleasure was a Granny Smith apple dipped in unsweetened chocolate with a touch of Stevia. I went to “my happy place” and forgot all about Lyme Disease. Even a few minutes vacation from Lyme Disease it a much needed break.
13. Adopting an attitude of “I have Lyme Disease but it does NOT have me”
14. Going to a Lyme Literate Doctor (LLD) in the US for treatment guidelines and having a very knowledgeable doctor in Toronto who can follow my progress.
15. Accepting that not everyone can be treated with natural/herbal treatments and some people like myself need heavy doses of antibiotics.
16. Imagining that my antibiotics were like Pac Men eating up all the bad bacteria.
17. Trying not to get caught up in my own issues and remember to think of others. They have their own things to contend with.
18. On a good day doing something that made me feel normal such as a pedicure or manicure or out for lunch with friends.
19. On a bad day giving myself permission to take up residence on the couch and watch B&W movies all day.
20. If I’ve misplaced something or lost one of my long notes (so I don’t forget things) then I would try to let it go. It probably wasn’t that important anyways.
21. But never, never feel sorry for myself because there are so many people that are worse off.
Test of Doctor Negotiation category
THis is a test post for the mental strategies category. Does it display in both recent posts and the Mental Strategies category?
When I was taught about natural selection the image that was always used was the thinning of the herd. Great fleet-footed herds of antelope running over the plains of Africa, the weak picked off by the inevitable lion there to chase them down. Isolate them, throw them down, and rip them to shreds.
The lion’s need for lunch, we were told, thinned the weaker antelope, who were, then, less likely to reproduce. Nature was selecting for the stronger, faster antelope.
Great, I always thought, unless you were that last antelope. I never was that good at track.
‘Lyme’, if it is not thinning the herd, it is certainly slowing part of the herd down. That is because what we call ‘Lyme’ and it’s co-infections, other microbial infections of similar types, are opportunistic by nature, and take up residence in the weaker parts of the body. The infection promotes inflammation, it lives in the connective tissue of the joints, or in the brain, in the lining of the gut. Areas that are predisposed to weakness take the hit. I am left handed and had seasonal allergies; my biggest problem was autoimmune. My husband always had trouble with balance; his first desperate symptoms were dizziness, tinnitus.
All of us have weaknesses. And none of us want to be that last antelope.
So, to my mind, I just have to work on being the best antelope I can be. I am left handed, have seasonal allergies, am prone to autoimmune illness’. I need to work on the balancing and calming of my immune system. I need to be gentle with it, take it to people who can give it love.
When my doctor told me, in one of the tougher early conversations: ‘If you have autoimmune thyroid disease you need to stop eating gluten right away,’ I honestly thought he was nuts. I ate lots of gluten. When he asked me about my favourite food I told him bagels. I had two little kids, I was working, I had enough to do already. Plus I have always been quite judgemental about very finicky diets. I was a moderate. In a world where what one ate was filled with judgement and self -loathing, it was almost political with me.
I have always associated a real preciousness about eating with negative things. And yet, importantly, I believed my doctor. (Eventually you have to believe someone.) And I cut out gluten (mostly). RIGHT AWAY I felt 50% better. And as soon as I felt better, I went back to eating gluten. If nothing else, it was a way to test the theory. Maybe I’m better now and I can eat half a pizza… uh, no. By bedtime my gut would feel like someone had poured concrete through it. I would feel like I could bend from about the bottom of my esophagus, but not below. All this time, I thought to myself, I guess I was about 41 at the time, this has been making me feel crappy, and I didn’t ever give my body enough of a break to figure that out…
These days I don’t even feel particularly put upon about the gluten. I have mostly cut out dairy, and I should probably do the same with sugar, but the gluten is easy. I eat rice and I eat quinoa and I eat vegetables. The biggest drag is not being able to grab a sandwich, but more and more there are other offerings catered to people who are not eating bread. If you try it, let’s just say there are a lot of chickpea salads in your future.
So, Gluten Free. It’s so common in these Wheat Belly Days that people may roll their eyes at you. But let them. Who cares. Those people being judgemental about finicky diets have their own issues. Take it from me! The more educated I’ve become about what triggers immune reactions in me, the more I am able to make good choices when out, or when home. And, conversely, the less I need to talk about it; with the waiters or with someone who’s invited me for dinner. I just go, have fun, eat (mostly) what is good for me and leave the rest. How can that not be the way to feel well?
Or one of a lot of different ways to feel (a little more) well. Maybe it’s about a combination of killing off the alien invaders and at the same time strengthening the body they are invading.
TODAY I FEEL BETTER, more able to think.
One thing I keep thinking about is the so-called Chinese curse ‘May You Live in Interesting Times’.
Which I guess brings us to the controversy over what is being called ‘Chronic Lyme.’ It is a big, messy, awful, debate that has doctors and alternative practitioners and particularly patients in a state of absolute chaos.
It has left us, the hapless patient, having to fend for ourselves; depending on luck and persistence.
On the one side, to the best of my understanding, are many well-meaning, well-educated people who believe that desperately sick patients are being misled and treated with inappropriate medicines, some of which can have terrible side effects. They believe that ‘Lyme’ has become a catch-all for a cluster of badly understood illnesses, at least some of which have their basis in undiagnosed mental illness. These are the double-blind study folks; trained in a scientific method that has taught them to be sceptical of anything that cannot be quantified and verified through testing. They are practicing medicine as they were taught in good medical schools which they studied hard to get into. They are doing their best to help folks without hurting them. (The dark shadows behind them are the insurers in the States, and, sadly, our own government in Canada.)
But they are not our side. Our allegiance is resolute and devoutly loyal; based largely, but not entirely, on our communal experience of having felt really bad before we met them, and feeling much better now. These are the also well-meaning, well-educated, empathetic practitioners who would argue, to the best of my understanding, that the testing is imperfect, the definition of the constellation of infections surrounding ‘Lyme’ too tight, that the variety of microbial infections shorthanded as ‘Lyme’ can be incredibly hard to get to, but must be treated (either with herbs or antibiotics) to avoid a long march of destruction to any number of systems in the body they’ve infected. I don’t think we’d be putting words in their mouth to say these microbial are a moving target, but that the amount of human suffering caused by the medical community’s desire to be cautious is unacceptable.
But maybe we would. And there is the rub. We can only tell you what happened to us. We can only tell you how bad we felt, how much of our life we had compromised, how hard we tried to get it sorted out, and how we feel now. So that is what we will write about here. There are people with Lyme who can’t walk. There are people with Lyme who can’t talk. There were times when all three of us could not think. And there’s nothing that makes you appreciate your ability to think, or the absence of depression, or chronic pain or clear vision, or the ability to get through the day without a nap, than not having had it and getting it back.
There are a million other Lyme stories. They are all over the internet. Many are sadder, lots are more angry, and many have more skeptical things to say about the practitioners they’ve run into. But these ones are ours.