This is a rough day, and by rough, I mean I was overheard by my daughters muttering "I would honestly rather die than live through another year of this disease.". My body has had it. Every one of my cells is in some sort of pain. I have a growing mental list of things that need done around the house, and a shrinking reservoir of energy with which to accomplish them.
I can't decide what the worst part of Late Stage Lyme is... is it my metabolic system's special talent of gaining five pounds for every pound of food consumed (how is this scientifically even possible??!)? Is it the weakness that suddenly settles over me at random, weakness so intense that it feels like my bones are going to implode under the crushing weight of the atmosphere? The aching pain in my fingers and toes that feels like they are being perpetually pulled out to the side? The neverending sensation of invisible bugs crawling around on my skin, or water trickling down my legs and arms? Is it the exhaustion that never lets up, even after a full night's sleep on a high quality mattress? Is it the blistering rashes on my legs and chest when my skin comes into contact with water, like, say, every time I have a shower? The contact allergies that come and go, like the sudden intolerance to toothpaste that results in peeling and blistering on my gums and the inside of my mouth when I brush my teeth? Is it the sudden electric shocks that race along my spine, legs and arms if I move a certain way? Or the isolation that occurs because I'm too tired to get out and do things, and when I do drag myself out, I'm too tired to interact with anyone? Is it the constant ebb and flow, back and forth, up and down of feeling like I'm improving, and then going back to the starting line and having to change my meds for the millionth time? Or the fact that my own medical system doesn't recognize this as a legitimate disease and would rather diagnose me with something fatal (ALS) and shovel painkillers into me while I wait to die, instead of trying the long term antibiotic and antiviral therapes that have been proven to help, so I have to pay for all my treatments, medications and supplies myself, instead of having my healthcre covered by the medical insurance that is supposed to be there for me when I need it? Or maybe the irritation of having my ex husband tell our children that I'm not really sick, and that Lyme Disease isn't real?
Today I think it's the way my brain is compromised. I can't remember what I thought about five minutes ago. Just writing this post has taken hours and countless re-reads. I'm learning to compensate. Sort of. I'm learning that I can't trust my brain, which means that I have to trust my husband's and kids' brains and memories more. The kids got away with some pretty insane stuff until I figured out what they were up to and learned how to say "Look, I may have said you could eat chocolate cake for dinner, but now I'm saying you can't. So eat your dinner, or no cake.".
Have you ever seen the movie "A Beautiful Mind", with Russell Crowe? It's about a man with paranoid schizophrenia and a delusional disorder who learns not to trust his mind when it tells him irrational things. I feel like that guy. A lot. I'll have days where all I do is cry, and I'm convinced that there is absolutely no hope, I'm never going to get better, I'm never going to be able to get a job, and we're all going to be homeless and living on the street because we won't be able to pay the bills or afford food and housing. Honestly, looking at my bank account, some days it's hard NOT to believe that. But I'm learning to remind myself that my emotions will change soon, that I have a literal, physical, actual bacterial infection in my brain, and I will be able to process and deal with things differently as soon as this attack passes.
If I try and wrap my head around the looming probability of another several years of taking thirty medicines a day, putting in my own i.v. every day, weekly hour-long round trips trips to the doctor's office with the price of gas in Vancouver being the highest in Canada, trying to come up with the money to finance all the treatments and and this perpetual roller coaster of energy, emotions, pain, weakness and mobility, it's all too much and I just want to give up and die. Some days I seriously consider just stopping all my meds and just trying to stay comfortable until my heart eventually can't beat one more time and just quits.
This is the kind of day when I need to remind myself... repeatedly... not to think about the future. Just think about what I'm going to do today. I'm going to go upstairs (if I can get there) and take my meds, I'm going to try and start my i.v. (my veins are so fragile now that I couldn't get it to work the last two days, and now I am starting to feel very ill because the bacteria are taking over again), I'm going to see the kids off to their dad's for his birthday dinner, and I'm going to pop a handful of painkillers so I can enjoy Date Night with my husband. I can't plan my life like a normal person. I can't set goals for the future. It's too overwhelming to have to keep adjusting my view of life down the road. So I live in the here and now, and it keeps me from calling Dr. Kavorkian. This is my new normal.
Do me a favor... educate yourself about this disease, know how to recognize signs and symptoms, know how to cut down on your risk of exposure, and learn how to treat it and where to find treatment. Unfortunately, the vast majority of us believe that our doctors know everything about this disease and how to treat it, when in reality, until our medical systems and the CDC decide they can no longer put the almighty dollar ahead of people's lives and legitimize Chronic Lyme Disease, doctors will continue to deny its existence, put their faith in a blood test that is incredibly inaccurate and rife with false negatives, and continue to diagnose people incorrectly with such things as Fibromyalgia, Rheumatoid Arthritis, CFS, lupus, ALS, Parkinsons, Alzheimers, dementia, psychological disorders, and attention-seeking. Lyme is known to imitate all sorts of illnesses, and almost every person with Late Stage Lyme can tell a story of going from one doctor after another and receiving one wrong diagnosis after another before finally being diagnosed with Lyme, by which time there has been irreversible organ and body system damage.
I had a doctor tell me she thought I had "sero-negative inflammatory arthritis" because none of my test results for arthritis came back positive. Another doctor looked me dead in the eye and said "If we didn't know that Chronic Lyme Disease isn't a real thing, I'd swear that's what you have.". Yet another doctor argued with me that I couldn't possibly have Lyme Disease because "we don't have ticks in Canada". Uhm... the CDC in the U.S. just amended their figures from 3,000 new cases of Lyme per year to more than 300,000 new cases per year, but Canadian doctors believe those ticks just stop at the border?! The Lower Mainland of British Columbia, where I live, was recently classified a "tick endemic area", meaning we are literally overrun with ticks. We have brush, we have ticks, we're in a temperate rainforest... ask any veterinarian in Canada about Lyme Disease, and they'll tell you they see it in house pets all the time. The same ticks that bite Fido and Fluffy will be just as happy to bite you, believe me.
And that brings up another point... think for a minute about there being more than 300,000 people coming down with Lyme Disease every single year. So a million new cases every three years. Think about the fact that until this year, they were only diagnosing and reporting about 3,000 new cases. That's over 297,000 people with Lyme Disease every year for the last who-knows-how-many years, not being treated. Does a bacterial infection that's left untreated just disappear without treatment? Or does it slowly become worse and worse until the person is either an invalid or dies? How many people have been wrongly diagnosed, when a month of antibiotics at the beginning could have eradicated the infection? How many pregnant mothers have passed this infection on to their unborn babies, or to their infants via breastfeeding? How many men and women have passed this infection on to their partners through bodily fluids? Yes, it has now been officially classed an STD.
Chances are very good that you know someone, or more than likely several someones, who have or will have Lyme Disease at some point. In my next post, I will detail how to recognize, prevent and treat this disease. But right now I'm just too exhusted and sore...
Friday 11 July 2014
Lazy Day Apple Cake
When you have tons of kids, you don't have the luxury of taking time off just because of a little debilitating chronic illness. Since I can't seem to get everybody to buy into the idea of "family fasting", I am always on the lookout for what I call "hooker recipes"... fast, cheap and easy.
This recipe for apple cake takes minutes to throw together, and having an awesome dessert on hand makes everyone feel a little less deprived, even if all they got was scrambled eggs and toast for dinner because Mom was on her deathbed again.
Lazy Day Apple Cake
Core and slice (peel if you want... I don't bother) however many apples you have on hand. Or pears. Or peaches. Or strawberries and rhubarb. Or whatever.
Sprinkle a yellow or white cake mix over the top. Sprinkle with 2 Tbsp. sugar (white or brown... whatever) and 1 Tbsp. cinnamon. Dot with a stick or more of margarine (or butter... or coconut oil...).
Bake at 350F for about half an hour until the fruit is all bubbly and gooey.
Serve with ice cream, or coconut cream, or milk, or almond milk, or Cool Whip, or whipped cream, or whatever.
This recipe for apple cake takes minutes to throw together, and having an awesome dessert on hand makes everyone feel a little less deprived, even if all they got was scrambled eggs and toast for dinner because Mom was on her deathbed again.
Lazy Day Apple Cake
Core and slice (peel if you want... I don't bother) however many apples you have on hand. Or pears. Or peaches. Or strawberries and rhubarb. Or whatever.
Sprinkle a yellow or white cake mix over the top. Sprinkle with 2 Tbsp. sugar (white or brown... whatever) and 1 Tbsp. cinnamon. Dot with a stick or more of margarine (or butter... or coconut oil...).
Bake at 350F for about half an hour until the fruit is all bubbly and gooey.
Serve with ice cream, or coconut cream, or milk, or almond milk, or Cool Whip, or whipped cream, or whatever.
Saturday 5 July 2014
Going to Pot
I was (and still am) a pastor's daughter. It was drilled into me from an early age that I was to set an example of obedient purity, that people were always watching me, and that there was a higher standard of morality on me than on most. I understood the importance of never doing anything that could make my parents look bad, or worse, make Christianity undesirable. I made sure to be on my best behaviour at all times, to dress modestly, to avoid alcohol, smoking, sex, movies, and dancing, and to never, ever, EVER have anything to do with drugs of any kind.
So why, you ask, were my tender teenage daughters and I reeking to high heaven of marijuana yesterday afternoon? Well, it's an interesting story involving my being licensed to buy medical marijuana now and us going to what my oldest daughter described as a "crackhouse" to make a (100% legal!) purchase.
My doctor is Lyme Literate, meaning he has studied Lyme Disease treatment extensively and has a special certification to treat people with Chronic Lyme Disease. There is new research that one of the derivitives of the marijuana plant, cannabidiol, or CBD oil, is phenomenally good at eradicating the Lyme bacteria. This is not to be confused with THC, the compound in marijuana that gives you that "high" feeling. CBD is a completely non-psychoactive substance that heals the body without making you feel or act goofy. So he would like me to start taking CBD oil to combat the infection that is currently wreaking havoc on my body and waging war on my joints, muscles, brain, blood vessels and organs.
The thing is, you can only get CBD oil from someone who has extracted it from the marijuana they grew for getting high, so you have to have a legal diagnosis from a medical doctor, as well as be registered at each separate MMJ (medical marijuana) dispensary that you wish to frequent, so that if the cops stop you for possession you can show them your letter and your little laminated card with a picture of a ganja leaf on it. See? One day and I'm already using abbreviations. I'm on a slippery slope here, folks.
Of course, the minute I mentioned that I was going to the pot store, both teenage daughters became intrigued. Caitlin offered to drive ("...because I need the practice."). Hannah, seeing no need to offer up a reason, simply said "I'm coming.".
We pulled up outside a little old house in an off-the-beaten-track neighbourhood. There was a hooker leaning into a car chatting with a man, both of whom looked up at us, correctly ascertained that we weren't going to present any sort of a challenge, and went back to conducting business. I made some comment to the girls about him probably just needing directions, and they shot me a simultaneous "you think we're idiots" kind of look. Well, it was worth a shot. I was still clear headed enough to have their innocent minds at the top of my priority list. Well, close to the top, anyway. I had let them come along, after all. Mostly just so they could drive away and dial 9-1-1 if things went south while I was inside the pot store.
I got out of the van, and the girls promptly flanked me, Caitlin muttering something about "not leaving us here to be raped and pillaged" and Hannah simply saying "I'm coming.". She says that a lot. I wondered aloud where the entrance was, and Caitlin said "I assume through the crackhouse.". That seemed reasonable.
We walked up to the side door, which opened just as we got to it. A man who was probably close to my age but who could pass for sixty two came out, bringing a cloud of skunk-scented smoke with him. I smiled and said hello (good breeding kicking in), and he grinned. He still had several of his original teeth, so I felt moderately guilty for my initial assumption that he was a down-and-outer.
We walked inside, and were met by a woman who had clearly had a very hard life, but who was very kind and informative. You could cut the marijuana smoke with a knife, but it was *medical* marijuana, totally legal, so it was alright. The woman (Kim? I think) took my picture, had me sign some forms and then went into another room to laminate my card. My girls have inherited my special talent of conveying dialogue without actually speaking, so we had a silent conversation that involved such things as "I'm getting high just standing here", "Are you absolutely positive we're not going to be drugged and shipped off to Edmonton to be sex slaves?" and "Who ARE you , Mom??!!".
Not appreciating the attitude, I turned my attention to reading the informational signs plastering the walls. My favourite was "10 Reasons Why You Should Get High at Work". Reason #4 was "Your boss will seem less irritating". Well, you can't argue with that, right?
Kim came back and asked me if I had had a chance to look at their daily menu, and what I would like to buy. I said I only wanted to buy the CBD oil, thank you. She said they were out but expecting more very soon, and would give me a call. In the meantime they did have some THC oil, very pure, that would take care of my pain for several hours. I did my best to explain that I do not want to get high, not even a little bit. She looked confused. I could almost hear her thinking "So why are you here??!". She walked into an adjoining room, and, being the curious sort, I followed her. The girls seemed to be too relaxed to care where I was going, so they stayed put. A young man was sitting behind a desk weighing and measuring out what looked to be clumps of oregano.
Kim said "She wants something for pain, but doesn't want to get high."
"She doesn't want to get high?! Why not?!"
I interjected with "I'm just looking for CBD oil. Nothing with THC." It didn't seem to be computing, so I added "Nothing psychotropic."
They both stared at me for several awkward seconds. I added weakly "I've never done this before.". The looks on their faces very clearly said "No crap." I was getting attitude from everybody today. Strangely, I just didn't care. I bought about half a teaspoon of some thick, black oil that they said is high in CBD and very low in THC, and if I take no more than half a grain of rice size, I won't feel anything except relaxed, so it's good to take it at bedtime. Fine, whatever, there are days the pain could drop a horse in its tracks, so I'll just keep it on hand for an emergency.
I politely declined the offer of a brownie or a Skor (score?) cookie, although I must admit I was curious about the Space Cake that was on sale.
Five minutes later the girls and I were safely back in the van and on our way home. Nobody spoke until we were about two blocks down the road. Caitlin said "I feel like a snack." at the same time Hannah said "I've got the munchies, legit.". I didn't care about eating. To be honest, I didn't care about much of anything. I just wanted to sleep. We pulled into the Tim Hortons drive thru and the girls each got something to hold them over until we got home.
I texted the experience to John, and got a whole lot of laughter emoticons back from him, as well as some new nicknames like "My wife the druggie". See, more attitude? All day long, attitude from everybody.
We walked in the house and I lined my meds up on the counter, including my new bottle of Methylcobalamin (B12). Caitlin pointed to it and said "First pot, and now meth. I knew it.".
I wasn't brave enough to try my new "product" (that's what we in the biz call it... "product"), so it's in a safe place where kids and pets can't access it. In the meantime, I'm going to eat hemp seeds like they're going out of style and wait for them to call me when the CBD oil comes in.
I swear I don't even know who I am any more...
So why, you ask, were my tender teenage daughters and I reeking to high heaven of marijuana yesterday afternoon? Well, it's an interesting story involving my being licensed to buy medical marijuana now and us going to what my oldest daughter described as a "crackhouse" to make a (100% legal!) purchase.
My doctor is Lyme Literate, meaning he has studied Lyme Disease treatment extensively and has a special certification to treat people with Chronic Lyme Disease. There is new research that one of the derivitives of the marijuana plant, cannabidiol, or CBD oil, is phenomenally good at eradicating the Lyme bacteria. This is not to be confused with THC, the compound in marijuana that gives you that "high" feeling. CBD is a completely non-psychoactive substance that heals the body without making you feel or act goofy. So he would like me to start taking CBD oil to combat the infection that is currently wreaking havoc on my body and waging war on my joints, muscles, brain, blood vessels and organs.
The thing is, you can only get CBD oil from someone who has extracted it from the marijuana they grew for getting high, so you have to have a legal diagnosis from a medical doctor, as well as be registered at each separate MMJ (medical marijuana) dispensary that you wish to frequent, so that if the cops stop you for possession you can show them your letter and your little laminated card with a picture of a ganja leaf on it. See? One day and I'm already using abbreviations. I'm on a slippery slope here, folks.
Of course, the minute I mentioned that I was going to the pot store, both teenage daughters became intrigued. Caitlin offered to drive ("...because I need the practice."). Hannah, seeing no need to offer up a reason, simply said "I'm coming.".
We pulled up outside a little old house in an off-the-beaten-track neighbourhood. There was a hooker leaning into a car chatting with a man, both of whom looked up at us, correctly ascertained that we weren't going to present any sort of a challenge, and went back to conducting business. I made some comment to the girls about him probably just needing directions, and they shot me a simultaneous "you think we're idiots" kind of look. Well, it was worth a shot. I was still clear headed enough to have their innocent minds at the top of my priority list. Well, close to the top, anyway. I had let them come along, after all. Mostly just so they could drive away and dial 9-1-1 if things went south while I was inside the pot store.
I got out of the van, and the girls promptly flanked me, Caitlin muttering something about "not leaving us here to be raped and pillaged" and Hannah simply saying "I'm coming.". She says that a lot. I wondered aloud where the entrance was, and Caitlin said "I assume through the crackhouse.". That seemed reasonable.
We walked up to the side door, which opened just as we got to it. A man who was probably close to my age but who could pass for sixty two came out, bringing a cloud of skunk-scented smoke with him. I smiled and said hello (good breeding kicking in), and he grinned. He still had several of his original teeth, so I felt moderately guilty for my initial assumption that he was a down-and-outer.
We walked inside, and were met by a woman who had clearly had a very hard life, but who was very kind and informative. You could cut the marijuana smoke with a knife, but it was *medical* marijuana, totally legal, so it was alright. The woman (Kim? I think) took my picture, had me sign some forms and then went into another room to laminate my card. My girls have inherited my special talent of conveying dialogue without actually speaking, so we had a silent conversation that involved such things as "I'm getting high just standing here", "Are you absolutely positive we're not going to be drugged and shipped off to Edmonton to be sex slaves?" and "Who ARE you , Mom??!!".
Not appreciating the attitude, I turned my attention to reading the informational signs plastering the walls. My favourite was "10 Reasons Why You Should Get High at Work". Reason #4 was "Your boss will seem less irritating". Well, you can't argue with that, right?
Kim came back and asked me if I had had a chance to look at their daily menu, and what I would like to buy. I said I only wanted to buy the CBD oil, thank you. She said they were out but expecting more very soon, and would give me a call. In the meantime they did have some THC oil, very pure, that would take care of my pain for several hours. I did my best to explain that I do not want to get high, not even a little bit. She looked confused. I could almost hear her thinking "So why are you here??!". She walked into an adjoining room, and, being the curious sort, I followed her. The girls seemed to be too relaxed to care where I was going, so they stayed put. A young man was sitting behind a desk weighing and measuring out what looked to be clumps of oregano.
Kim said "She wants something for pain, but doesn't want to get high."
"She doesn't want to get high?! Why not?!"
I interjected with "I'm just looking for CBD oil. Nothing with THC." It didn't seem to be computing, so I added "Nothing psychotropic."
They both stared at me for several awkward seconds. I added weakly "I've never done this before.". The looks on their faces very clearly said "No crap." I was getting attitude from everybody today. Strangely, I just didn't care. I bought about half a teaspoon of some thick, black oil that they said is high in CBD and very low in THC, and if I take no more than half a grain of rice size, I won't feel anything except relaxed, so it's good to take it at bedtime. Fine, whatever, there are days the pain could drop a horse in its tracks, so I'll just keep it on hand for an emergency.
I politely declined the offer of a brownie or a Skor (score?) cookie, although I must admit I was curious about the Space Cake that was on sale.
Five minutes later the girls and I were safely back in the van and on our way home. Nobody spoke until we were about two blocks down the road. Caitlin said "I feel like a snack." at the same time Hannah said "I've got the munchies, legit.". I didn't care about eating. To be honest, I didn't care about much of anything. I just wanted to sleep. We pulled into the Tim Hortons drive thru and the girls each got something to hold them over until we got home.
I texted the experience to John, and got a whole lot of laughter emoticons back from him, as well as some new nicknames like "My wife the druggie". See, more attitude? All day long, attitude from everybody.
We walked in the house and I lined my meds up on the counter, including my new bottle of Methylcobalamin (B12). Caitlin pointed to it and said "First pot, and now meth. I knew it.".
I wasn't brave enough to try my new "product" (that's what we in the biz call it... "product"), so it's in a safe place where kids and pets can't access it. In the meantime, I'm going to eat hemp seeds like they're going out of style and wait for them to call me when the CBD oil comes in.
I swear I don't even know who I am any more...
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