Avoiding stress is part of the healing plan for a person with chronic lyme. I’ll give a plaid rabbit to anyone that can successfully avoid stress this day in age. Everyone has stress. What is stressful to one person may not seem stressful to another. Perception is everything. I find it is best not to judge other’s stress if at all possible.
My life may not appear to be stressful to anyone that does not have multiple chronic infectious diseases. It is very difficult for the non-lyme community to grasp how life is so drastically impacted by this kind of illness. Many people think they know what Lyme is, and therefore dismiss those of us with Lyme as psychotic hypochondriacs. Sme, eye roll.
I don’t have a typical forty to fifty hour work week. I earn a bit of money working on side jobs from time to time. Once in a blue moon, I’ll sell a painting for a few bucks. Believe me, though, there is no pack of wild dogs following me to lap up the gravy drizzling off my train. To those with full time jobs, that may seem so liberating. How lucky am I to live a life of leisure. My lack of steady employment also means I lack a steady income. I guess you could say being unsteadily employed is bitter sweet. The sweet part is not having to function on an on-going basis; and when you don’t function well most of the time, not working is a relief.
The bitter part is feeling like a deadbeat and running up huge bills. I just charged $2,100 for a one month supply of treatment. This is the reason my unemployment status feels like a gaping wound filled with salt. I can’t buy a pair of underwear at Walmart without my shoulders sagging from the pounds of guilt sitting on them. I watch as my husband enthusiastically buy my lovely teenage daughter every unnecessary item she desires. My husband is the best father a daughter could ever have. My point is, that’s the power of employment. Me? I wear sweaters that are older than my daughter and come unglued every eight weeks when I pay $365 to see my LLMD. So yes, not having a steady paycheck can be just as stressful as working when your illness costs your family ridiculous amounts of money.
“Ask family for help.” That is another piece of advice Doctors throw out to us Lymies – to help us reduce stress. After visiting the cardiologist following my diagnosis of vasovagal syncope caused by Dysautonomia, he recommended I reduce my stress and get aerobic exercise. When I explained how aerobic exercise frequently leaves me too exhausted to complete essential life tasks (like buying food and washing cloths) he said, “Ask for help from your daughter”. I laughed.
She has lyme and schleps through every school day with barely enough energy to do homework. If she was out three nights a week and every weekend yucking it up with friends, I would be inclined to have her do more than just her own laundry, and bathroom/bedroom cleaning. Since I have to stick an M-80 under her ass to blast her off the couch to eat dinner with us, I don’t see asking her for help as a big solution.
The reality of the family support situation is, we all support each other in some way. Regardless of what my life is like, I am still part of a much bigger picture and need to offer others support to the best of my ability. And that thinking adds mountains of stress. With all that I cope with, my sister calls me to see if I can dog sit her two pit bulls while she and her husband go on vacations and long weekends. They refuse to vaccinate the dogs, so boarding is not an option. My unsteady employment situation, being what it is, means I need the money, and even though I don’t have the capacity, if they flip me a few bucks, I feel guilty if I say no. This kind of thinking and over doing just feeds the vicious cycle of unwellness because I neglect my most essential need – rest.
Regardless of how I feel on any given day, I always take calls from my mother or sister when they feel overwhelmed with life. Everyone needs a shoulder. I don’t want to be wrapped up in all my own drama and not be there…. But sometimes, I just want to say really? This is your issue? My sister Tracy’s husband has his own business and works way too many hours. He has a very nice annual income. I imagine that would require significant effort. Although she enjoys the financial perks, but complains because she never gets to see her Husband, and is always left to take care of the dogs. That puts a major crimp in her schedule of spa appointments, tennis and art lessons. I patiently concur with her plight. For example, at the moment she is frustrated by the slow progress of the combination art studio/three car garage they are having built on their property. The garage portion is complete and houses three antique cars; “Greenstein”, the “Clipper” and “Bonnie”. Yes, the cars have names. The old existing two car garage— well that only holds the convertible roadster and practical 4 wheel drive sedan. The truck and the second sedan sit out in the driveway. The art studio part of the building is months behind schedule. Alas, my sister is left to paint in the cramped extra room they use for an office while my brother-in-law (who works way too may hours) takes his sweet time finishing the work. In case you were wondering, they have no children, just two dogs and seven cars. I completely understand her frustration and try not to compare it to mine, which is we have half the income, a child, and two out of three of us have chronic illness. I don’t mean to be bitter, but REALLY? I’m very happy that she has a charmed life. But listening to people complain about this petty shit kind-of-sorta makes me vomit in my mouth a bit. Was that too harsh?
So I listen and empathize with my sister because she is willing to listen to me whining about my life. On the surface it seem she has it easy. Compared to the harsh reality most people live, she deserves a good bitch slapping for taking what she has for granted. Perception is reality. In her mind she has stress. It is just different than mine. The other morning I texted her to tell her that I revisited my breakfast for the third time in a week. The next day, she texted me that she had the worst mani/pedi EVER! That gave me such a chuckle.
What is truly most stressful for me is managing my mother. My mother is soon to be 80. She is generally healthy, but could be effectively described as a frozen porcupine. Mom was one of 14 children raised in the deep south in extreme poverty. Her father was abusive and her mother– too busy to meet the demands of that many. My mother didn’t really have a childhood, she had misery. By twelve, she was a parent as she raised her younger siblings. My father who was one of nine raised himself. His father passed when he was four and his mother was generally bed-ridden. He was a loving bastard. Truly my Dad loved us deeply, but his execution on parenting left a lot to be desired. As parents go, they wouldn’t win any awards, but I’m not in prison, so I guess they did ok. I forgive them for the life they gave us. What other outcome could there have been? As a husband, well, my father was not great. It was a toxic marriage. So, my mother is profoundly damaged. She is toxically negative. She is emotionally unavailable, socially frustrated, and bitter. She currently lives alone, has few friends and her lonely existence haunts me daily.
All children really want for their parents is to see them happy and healthy. I have this self inflicted burden of trying to find a way to make the last few years of her life enjoyable. The woman is incapable of happiness, so I have imposed an impossible task upon myself. The silver lining is (and I always look for one) she was able to work and earn a decent wage for the past 50 years and therefore is financially solid as a rock. Amen to the fact we don’t have to support her. Needless to say, she adds exponentially to my stress level. Sadly, the burden of seeing her through her final senior years is falling on to my shoulders as my sister and mother had a major falling out. I am caught in the middle. They are not speaking to one another because both are too proud to admit any wrong doing. They were both wrong, by the way.
These are the reasons I snort loudly when I hear a doctor or any high almighty advice giver tell me to manage my stress. No, I don’t do yoga, thank you. Every fucking joint in my body aches, so yoga doesn’t have the same appeal as it does for lyme free, gluten eating perfect people. All this stress joins in with the bacteria to eat away at me daily. They are the chronic stressors in my life. I feel that is plenty stress for one person, but there are also what I call ‘acute’ stressors. These are the isolated situations that pop up from day to day that make me want to pull my own finger nails off one at a time. Yesterday provided text book examples of my chronic and acute stress factors. This is a typical day for me.
I woke up at 6:45. I let Mimzy out to pee, then fed her and Miss Kitty. Next, I made a pot of coffee so my husband had some for his commute, and so I could build up enough energy to get through the morning. Without it, I’d be clamoring for the sofa by 11:30 A.M.. After everyone left, I toasted myself a gluten free bagel to sop up all the gut rotting medicine I had to take. After getting all that down, I had the typical hour of feeling like I would vomit. Once the nausea eased up, I started the detox process. This has several phases. Phase I is a twenty minute steaming hot baking soda epsom salt bath to suck all the dead bacteria toxins out of my body through the skin. This process kicks my neurocardiogenic syncope into high gear, so for the next hour I had to be careful to not pass out or fall down the stairs. Next, I followed up the bath by rubbing myself down with coconut oil. This is a natural fungicide that keeps my skin from getting overrun with yeast because I take 1000 mgs of various antibiotics daily. For the next half hour, I continued to sweat from the heat of the bath. This part of the detox process is when the real fun begins. All the “debris’ that comes from god knows where starts oozing through my pores with the sweat. This lead to the next phase: The shower after the bath. Lastly, I applied one more round of moisturizer so my skin didn’t peel off my body in sheets. Finally, I was ready to dry my hair and apply make up.
Applying make-up is always super fun. It’s like going on an easter egg hunt. I get out the magnifying mirror and search for remaining flecks of metal, colored fibers and crystalized matter that feel like shards of glass cutting through my skin. You see, I have an MTHFR gene mutation A1289C that interrupts my body’s ability to detoxify . This (motherfucker of a) gene when working correctly, helps break down excess metals and toxins to be removed from your body. So when it’s not working correctly, those heavy metals and toxins aren’t being eliminated from the body. Over years of exposure to environmental toxins, I am a cesspool of garbage. My body, in a desperate attempt to clean itself, will push it through the largest detoxification organ in our body: the skin.
Once the surface of my face was free of trash, I made myself up to look like less of a zombie. Meanwhile as the clock ticked away, I looked around the house at all the things I should be cleaning, fixing, organizing while I wasted time trying to get healthy. It was now 11:30. My throat tightened with anxiety as I thought of my husband. He had probably already dealt with three network crisis situations slaving away in corporate american while I lollygagged through life at home detoxifiy. I couldn’t dwell on that, though. I needed to remain focused on tasks at hand. I told Olivia we would go to the gym after school – in a desperate attempt to help our wasting bodies regain some strength. The thought of that made me feel anxious too. I pushed the negative thoughts out of my head saying, “You can get better. Focus on getting better.” I got into my best sweatpants and stumbled downstairs with the laundry.
Once the wash was going, I emptied the dishwasher and made appointments. Since multiple chronic infectious diseases fuck with every cell in your body, I am in a constant state of appointment making. EKG’s, Ultrasounds, Dexa scans. Endocrinologists. Rheumatologist. I really despise the “ist” suffix more than any suffix in the english language. After my last call (which was to my mother to inform her I would be arriving at 3:30 to help her with paperwork) it was noon and time to take more pills. I poured a large glass of carefully filtered water and took my probiotics and 10 different supplements to help my body deal with disease. Joy abounded. It is with gratitude I report these do not make me want to vomit. While I waited for Olivia to get home, I decided to make Mimzy a mani/pedi appointment. Her bear-claw sized nails really needed to be clipped. They were so long she was starting to loose her footing on the hardwood floors! Since the groomer was so close to the gym it seemed like a perfect time for an appointment.
Olivia was home by noon compliments of a mid-term half day. Once the three of us got out the door, the first stop was at LabCorp. What’s a week without a visit to a lab? I left the car running while I went in so Olivia and Mimzy could relax in a warm car with the music blasting. I assumed DYFUS would be ok with that since she is now 16. When I got inside, I was thrilled to see there was no wait and got in right away. The tech reviewed my lab slip and had a question about one of the twelve tests requested. Dialog with another male tech ensued. The male tech pissed me the hell off. After the two of them resolved the initial question he wouldn’t shut up. He kept blabbing while she was entering my very important blood test information into the computer. I sat with a fake smile plastered to my face while on the inside said, “If you don’t shut the fuck up in two seconds, I’m going to bitch slap you into Friday.”
The lasers shooting from my eye sockets must have been effective, because Mr. Chatty Face finally shut his trap. I was done with the paperwork, and got into the drawing room. I rolled up my sleeve and offered up my arm. I’m always proud when the phlebotomists rave about my prominent veins. I said, “I’m such an easy stick!” I think perhaps that isn’t a good thing to announce anywhere outside of a blood testing lab. So anyway, I sat still and was patient as the tech swapped out the full vile for an empty vial which became full; empty; full, empty, full, empty, full, until she had, what at a glance, looked like eight vials. Ha, that’s nothing, I thought as I recalled the 52 they took that sunny day in May 2103. Off to the groomer!
When I went inside the grooming den, Mimzy was crying for me. She was waiting in a crate – something she despises. Maybe it wasn’t such a great spa day after all, I thought. As the groomer rang me up, she informed me of all the services she provided plus they squeezed out her anal glands for free! Oh goodie! A free anal gland squeezing. I wondered for a minute, did they really perform this admirable free service, or are they just trying to schmooze me with their fancy anal gland propaganda. I figured if Mimzy’s butt smelled later, I would know they were just pulling the wool over my eyes. I shelled out too much money and headed off to Mom’s house. This is when things started going down hill.
I arrive at my mother’s with my freshly groomed sweetheart of a love bug dog. She is really a delightfully sweet thing that everyone adores. Except my mother. She adores nothing and nobody. She looked down at Mimzy and said, “Well look at who’s here. I guess I’ll be getting fur all over my sofa.” On the inside: “Yep and it will give you something to do with the 16 waking hours per day you do nothing but haunt me— bitch.” Out loud: “She was just groomed, and I’ll clean up after her.”
With that out of the way, we launched into the purpose of the visit; to complete a packet of paperwork for her upcoming geriatric assessment appointment — that I made for her because she is a forgetful, paranoid, bipolar depressed bag of…never mind.
On the first page of the packet there was a place to write down “your primary concerns and reasons for making the appointment.” I asked my mother what she wanted me to to write down. In her most poisonous tone of voice, “She replied, “What are your concerns? You made the appointment!” On the inside: “My concern is that you have dementia, you 50th birthday forgetting, key loosing, mood changing, paranoid everyone is out to get you, heartless bitch.” Out loud: “You mention you are having trouble keeping track of things. You also mentioned you have a tremor in your hands and it is hard for you to write. On the inside: “Which is why you asked me to come over and help you fill this out – bitch.” Out loud: “Why don’t we start with that.”
When we got back to the car I glanced into the back seat. As expected, Mimzy hopped out of the way back of the jeep into the back seat so she could evenly distribute dog snot all over the the rear windows. “And this is why I call my car the chuck wagon”, I said to myself. What I didn’t expect to see was a package of some sort shredded to pieces. I looked at Olivia. “What was that?” Olivia was notorious for leaving her shit in my car. I am forever unloading stray socks, wrappers, left over lunch bags, bobby pins etc. “She said, I don’t know.” I decided to deal with it when I got home. I figured my husband ate something when he drove it the other day, and left behind a little something that smelled irresistible to my dog’s nose.
We arrive at home close to 7pm. I was so excited to flop on the couch and watch the news. Olivia took the dog inside and I decided to explore the mess in the back seat. As I picked up pieces of wrapping and tattered box I found enough to identify that it was a box of dark chocolate mint filled Girl Scout Penguins. My initial thought was, “when did girl scouts start selling chocolate penguins?” Then the word chocolate began to resonate. Dark chocolates. A box. My heart dropped to my feet. I felt my face get hot with anger. Anyone that owns a dog knows that a box of chocolates is a death sentence. I had absolutely no idea there was a box of chocolates in the car. It certainly wasn’t anywhere in plain view. The box was so destroyed, there was no way I could tell how big it was, or how many chocolates Mimzy ate. I could tell by her body language that she did in fact eat some. She had that expression on her face. The one that says, “Mommy, I was a bad girl and now I don’t feel well.” This was not her first dietary indiscretion, so I know the look well.
I raced into the house and called Animerge. They put me in touch with a pet poison hotline and for a fee of $65 applied to my credit card, I spoke to a trained toxicologist. She explained how to make Mimzy vomit by giving her two tablespoons of hydrogen peroxide with two teaspoons of milk. Miraculously, I had some of both on hand, and in a stroke of great fortune, Mimzy lapped it up without too much coaxing needed. I was instructed to keep her walking in a lit area where I could inspect the vomit to assess the amount of chocolate that came up. I put on my coat, flipped on the front porch light and we headed out into the cold for a stroll on the walkway. Fortunately the mixture took affect quickly. And furiously. Within minutes there were four huge piles of melted chocolate mixed with doggie stomach acid adorning the front walkway. I sighed with relief knowing that I saved her life. I bent over and closely examine the piles – as instructed. It looked like there was a LOT of chocolate. Added to the snow and a couple piles of pooh, it looked a bit like abstract art. I couldn’t resist snapping a phone pic.
Shortly after that drama came to a quiet conclusion, my husband came in the door. He had been to the gym after work, so it was close to 8:30. Olivia, feeling somewhat accused by my reaction to the crisis, was hiding in her room, no doubt, with her ear plastered to the door so she could hear the conversation downstairs. “How was your day?” my husband asked, innocently. I smiled. It must have looked purely evil. In a calm tone, I asked if he happened to have purchased a box of Mint filled dark chocolate penguin candies from a Girl Scout.” He looked at me with his face scrunched up by the randomness of the question and said, “What? No.“ I then regaled him with the story of the box of chocolates and vomiting dog. I took his hand warmly as I escorted him to the front porch to show him the four piles of melted chocolate vomit freezing to the pavers of the walkway in the 13 degree weather. I was like a proud peacock showing off my feathers. “Look how I saved my dog’s life.” On the inside: Now get your ass outside and clean up the frozen puke. He knows me so well. Still in his exercise shorts, he slumped into the garage for some sand and piled in atop the other piles. A bit later he added sweats and shoveled the mess into the woods on the side of the house.
Olivia must have been listening to the dialog – as I knew she would. She came downstairs and announced her conclusion about the mysterious appearing box of chocolates. “It must have fallen out of Katie’s bag. She reminded me Katie (a girl scout) was in the car recently.” I agreed with her sleuthing, not revealing that I had that figured out as soon as I realized it was a box of girl scout chocolates. I also knew they were not Olivia’s. She may leave a lot of things in the car, but she wouldn’t let dark chocolate mint candies out of her sight for a second. I’ve seen her blow through an entire bag of peppermint patties in a day.
I was pretty proud of myself for remaining relatively calm throughout the entire crisis. It was evidence that the recent round of treatment was working. Had this happened two months ago, I would have been a raging bull verbally tearing my poor daughter and her friend limb from limb. Olivia asked me if she should tell Katie what happened. I said, “please no. It would only upset her. I explained how much I really like all her friends and want them to always feel welcome. I also took the opportunity to preach that “we all need to remember to take all our things out of the car when we get out.” Because my husband can never let Olivia take even an ounce of heat what-so-ever, he quickly turned the finger in my direction saying: “You should really look through the car before you take the dog anywhere.”