Life with Lyme

I'm tired today. Not regular tired, where you were up late last night and had a busy day today, and now all you want to do is sit down with a nice cool drink, watch a couple of favourite shows, and then head to bed early.

I'm "Lyme tired". As in, I did practically nothing today but I can barely move, my eyes are so bleary they're watering nonstop and people keep asking me why I'm crying, and I look like I aged ten years in a single day. No amount of makeup can hide "Lyme tired", and I have no idea if it's going to last for a week or be gone by tomorrow morning.

This disease is so frustrating. I want to plan weekend barbecues, late night movie dates with my husband, take my Littles to the park for a picnic, get a full time job, walk with the dogs around the lake every evening, take meals to encourage people when they're sick or have a new baby, take up a hobby or two... but no. I'm still too sick. I don't want to be sick. I pretend I'm not sick all the time.

Today I sat on the couch with a plate of breakfast and a cold drink, dogs at my feet, watching a movie with my oldest daughter, and I thought "wow, this is really nice". It felt so "normal", except for the fact that I was tied to an i.v. tube for an hour. 

That's my "normal" now. Get up, take eight medicines, take the kids to school, come home, have breakfast, start my i.v., take a nap. Get up, take seven medicines, plan dinner and/or start the crockpot, have a nap. Pick kids up from school, run an errand (which generally means I nap in the van while my older girls go into the store or wherever), drive home, make supper, rest for a bit. Make lunches for the next day, head upstairs, take six medicines, fall into bed exhausted. Every. Single. Day.

One of the most frustrating things about this disease is the fact that it is a neurological illness, meaning that it affects the brain. The whole brain. It doesn't pick and choose which parts of the brain to mess with. Not only are there destructive bacteria in my brain at any given moment, as the antibiotics do their job and they die off in every other part of my body, they release toxins which accumulate in the brain, causing pain, confusion, and major emotional storms. I've pretty much conquered the fits of rage (and yes, there were many of those over the years, for which I will forever feel guilty), but the fatigue and pain just get to be too much to handle some days and they leak down my face in the form of tears at the most inconventient times. I have no idea how to conquer the tears. To be honest, I'm too tired to try.

I am learning to be grateful for the things the healthy Susan might have taken for granted: my husband coming in the door after work and walking straight across the room to kiss me hello before he even cleaned out his lunch bag; the lack of rain today so the kids can play outside and not strew their toys, blankets and dirty dishes around the house; the warm(ish) temperature that allows me to have the windows open for a fresh breeze; my 18 year old daughter's culinary expertise and willingness to pick up making the dinner I had planned and run out of steam while doing. 

Lyme Disease gives you a choice: you can either choose to let the discouragement, pain and frustration take over and strangle your spirit, or you can choose to find beauty in the little things and let them be a healing balm.

Tonight my healing balm is Jambalaya with chicken, sausage, shrimp, peppers, onions and peas, made by my thoughtful daughter-blessing. To her future husband: you're welcome. This girl is an amazing cook, instinctive and creative. She embodies beauty, and you will be blessed many times over by her cooking. Trust me. This Jambalaya is delicious.

And now the love of my life is taking me for a drive that may or may not include ice cream. He knows when I have exhausted my store of endurance, and knows that alone time with him recharges my drained batteries. More beauty, and another healing balm.

Thank you, Father, for the blessings you have hidden in the pain, like diamonds waiting to be unearthed. For these I am deeply grateful.

Blessings,

me. <3

Crockpot Mango Coconut Chicken Curry

The last couple of days, I have felt better than I have in years. Literally, YEARS. Other than the invisible bugs crawling inside my skin, but whatever.

I vacuumed the entire downstairs this morning (that might not sound like a lot, but trust me...) and then started the crockpot for dinner.

A church friend posted a recipe that looked amazing a few days ago, and I decided to give it a try. However, me being me, and having a deep seated aversion to following rules, I changed the recipe a bit. It smells mind-blowingly good. There's your word for the day: mind-blowingly.

So without further adieu, if anyone wants some culinary inspiration, here is what's cooking at Stagg-Wilson Manor today:

Crockpot Mango Coconut Chicken Curry

8 chicken breasts, boneless & skinless
1 can coconut milk
1 can coconut cream (plus half a can I had in the fridge)
2 Tbsp. tomato paste
1 clove of garlic, minced
1 Tbsp. onion powder
2 Tbsp. honey (I would omit the honey next time bc I don't like sweet main dishes, and it's not Paleo)
1tsp. fresh minced ginger
3 tsp. curry power
2 jars of Patak's Coconut Peanut Curry Sauce (just because it was there)
Salt to taste
1 cup mango, diced (I used frozen)

Garnish:
1 cup roasted cashews
Fresh cilantro for garnish

I stirred al the spices and liquids together and poured it over the frozen chicken and mango in the crockpot and turned it to Low to cook for about 6 hours. We'll have it over rice, topped with the cashews and cilantro.

The original recipe called for a can of pineapple chunks, but I felt like it was already on the sweet side as it was. It also called for a sliced bulb of fennel but I passed on that because, well, gross.

Tonight is Caiti's grad commencement, and I have a full day of job hunting, chiropractor, naturopath, picking kids up from school, picking big kid up from work, and lounging about in my anti-gravity recliner in my beautiful back yard that my awesome husband has been working on every evening for weeks. You know you're jealous. 

Thanking God for a day with a lot less pain and a lot more mobility. We just don't know what a gift good health is until we don't have it any more. So my heart is truly grateful. 

Remember When the Indonesians Fought the Jamaicans in the Asian Wars? Yeah, Me Neither.

When I'm old and in the nursing home, and I'm sitting in my wheelchair laughing to myself all day long, it won't be because I've finally lost my mind, it will be because I'm remembering conversations like the one we had on the way to school this morning.

Sara (7): "Oh my GOSH, this sock is longer than the other one! Aaaaahhhhh!!!"

Zach (10): (calmly) "Be quiet, Sara. That is not a crisis. The Asian War was a crisis."

Caitlin(18): (disdainfully) "The Asian War. Which Asian War? Iwo Jima? Vietnam? Korean?"

Zach: (with the air of deep confidence for which he is famous) "Indonesian."

Everyone looks at me to see if that's even a thing. I keep my face carefully blank.

Caitlin: "Indonesian, huh? Who did they fight?"

Zach: (still calm, almost bored) "The Jamaicans."

All eyes on me, except Zach's. He is calmly looking out the window, trying to maintain his air of authority.

Me: "I think it's clear your brother is never going to be a world renowned historian."

Zach: "I'm hurt."

Let me introduce myself...

I'm Susan. Or Mom. Sometimes Babe. But most often Mom.

My husband John and I have nine kids. Five boys, aged 22, 20, 17, 12 and 10. Four girls, aged 18, 15, 11 and 7. Two dogs, one cat, two lovebirds and about half a million ants that seek shelter in my kitchen and laundry room every time it rains, which is quite a lot, since Vancouver is a temperate rainforest.

I grew up the daughter of a Baptist pastor and a stay-at-home mother, went to college and majored in nursing and music, toured with a singing group, got a degree in medical lab technology, got married to my teenage sweetheart, started a family, got a degree in lactation consulting, had a few more kids, survived an accident that took away my speech, mobility and memory for a few years (long story for another post), lost my husband (longer story for yet another post), and suddenly realized I was alone with six grieving children and didn't have a clue who I was or how to survive.

This was not my plan, and I was lost and bewildered.

Then I met John. He allowed me to grieve and heal in my own time, with no pressure to move on or "get over it". We had the same faith, the same likes and dislikes, the same sense of humour, the same intolerance for self-centered, narcissistic people, the same practicality and common sense. Six months after we first met, we ordered our wedding cupcakes. A month after that we got engaged. Yeah, we do things a little bit backwards sometimes, just to mix it up a little.

I had been a stay-at-home, homeschooling mom for the last nineteen years, but I enrolled the kids in a little private school, and then I went back to college to study Rehabilitation Therapy, a field that held great significance for me in light of my own accident recovery a few years prior. The kids and I moved to a bigger house across town, and when I became increasingly exhausted, weepy and weak, I chalked it up to all the changes and new demands in my life.

But the fatigue became worse and worse, to the point where I couldn't stay awake for more than a couple of hours at a time. I slept through most of my classes. I slept in the van before I could find the strength to drive home from school. I slept in the van while my daughters did the grocery shopping. I slept leaning up against the shower wall. I slept in the driveway of my house, too tired to walk inside. As the fatigue increased, new strange symptoms emerged: excruciating pain in every muscle and every joint; random joints would dislocate; my eyes couldn't handle light, everything was in greyscale, like I was looking through smoke; my hearing was muted, like I was hearing underwater, but the volume seemed to be turned up to a painful level; I had constant muscle spasms, tremors, electric shock sensations, numbness around my face and in my toes.

I saw so many doctors I lost count: GPs, neurologists, internists, dermatologists, rheumatologists. They suggested inflammatory arthritis, Lupus, Multiple Sclerosis, ALS, "just stress", and a need for attention. None of them could explain why, if I was just inventing symptoms, my bloodwork showed ridiculously high levels of C-Reactive Protein (an inflammatory marker), very low Total Protein levels, and a complete lack of immunoglobulins.

Long story that I will detail later, but eventually I was diagnosed with Late Stage Neurological Lyme Disease, a bacterial infection caused by a tiny little spirochete called Borrelia burgdorferi. I also tested positive for Bartonella, Babesiosis, a mycoplasma infection, adrenal insufficiency, and several viral and parasitic infections.

I have absolutely no idea how I managed to finish my program, but I graduated with honours and completed all the required practicum hours. I know for a fact I didn't do it under my own strength, and I give full glory to God, because without Him, I would have joined the other seven people that dropped out of the program because they couldn't cut it.

John and I were married, and I became an instant stepmom to his three children, who I love like my own. I love being this man's wife. I may have been "created to be his helpmeet", but he is an amazing blessing, help and source of wisdom and encouragement to me.

So, that's a little bit about me. My goal through this blog is to provide encouragement to people living with chronic pain and illness, give hope to struggling moms as they parent, share ideas for healthy eating and easy meals, write about what makes my life easier and less painful, and hopefully to illustrate God's love, goodness and grace as, slowly but surely, I learn to yield my plan to His plan, and discover the new and improved Susan.

Blessings,

me. <3