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Saturday, June 11, 2016

Part 2 - Zeus is in my bed!


I'd like you to picture this. You're me. A 22 year old girl who is visiting a doctors office for literally the third time in your life (that's including your birth). You've recently found out that you have Lyme Disease and are waiting to see a doctor who is said to treat it. (In fact, this doctor has been treating your husband for the past few months). You sit down in the exam room and hand them your test results. They briefly look over them and then ask your spouse if he would mind leaving the room so we could have a few words... The Doc then says...

"Now I know your husband has been sick for a while and I am sure that has been difficult for you to watch. I can see that your test results are positive and don't get me wrong, I do think that there is something going on... but I get the feeling that you want attention...
Let's just call horses horses and zebras zebras." - undisclosed medical professional

Whatever that means?

Okay. So lettuce go back in time to a couple of months before this...
I'm lying in bed, the blanket close up under my chin, teetering between consciousness and sleep... (Ya know that yummy stage you're in when you are on the verge of falling into a deep sleep but can still hear the water in the toilet running and the ac unit buzzing outside?)
Anyways. I'm slowly falling asleep and I begin to feel a tingle in my toe. Nothing to make me jump out of bed and fly into the next room like that feeling of something scurrying across your skin, just more like a tiny shock. I quickly notice it, turn onto my back and return to my pre-dream thoughts (which probably consisted of trying to invent a new cookie cutter and getting that Prince song out of my head).
"That's when I saw her, ooh, I saw her she walked in through the out door out door. She wore a raZEUS IS IN MY BED!!!!" My eyes pop open. I immediately go completely stiff like a surfboard, tighten my grip on the blankets that are still up under my chin and suddenly notice that I've forgotten how to breath. I'm awake. So awake. Why? Like me and Prince were saying... ZEUS IS IN MY BED. (or at least I thought so...)
Lightning bolts begin flying up my legs. I wait wait to see if they go away but they only get worse and more frequent. I wiggle my toes to see if they stop. Nope. I start to tighten and then relax the muscles in my legs. The shocks continue to shoot up my legs from my toes and the soles of my feet. I try to stay calm but the pain is now reaching my hips. I think about loosening the death grip I have on my blankets and peeking under the covers to check and make sure that Zeus isn't at the bottom of my sheets throwing lightning at the heels of my feet. When I finally get up the courage to take a look, my arms start to tingle and vibrate. "Are you kidding me?", I thought. The tingles turn into shocks and I finally turn to Justin and say..."Sooooo I think there's something wrong..."

On a side note... If there is one thing I have discovered about God it is that he has impeccable timing. Truly.
These nightly shock sessions went on for at least a week and at this time Justin was reading a book called Natures Dirty Needle, a book on Lyme Disease. In this book it mentions that Lyme Disease is possibly sexually transmitted. Yes, peeps. Sexually transmitted... that means you don't have to get bit by a tick to contract it. You actually can just... well. You get it. (Explains the strep and pneumonia I got on my honeymoon...)
When I told Justin about the zingers in my veins he of course said... "I think we need to get you tested for Lyme's" and showed me the book.
I got tested through Igenix Labs and received my results a few weeks later. Positive peeps. I was probably more shocked then anyone. My body was definitely trying to communicate to me that something was not right. Sadly it took electricity up my bones to get a message to my brain that something was wrong.

When I look back now and try to think about symptoms I was experiencing, I'm amazed at how many there were and still are.
Everything from:
Never ending back pain. Somedays it would sink into one side of my back, usually up around my shoulder blades. Id wake up the next day feeling semi-okay until realizing that the stabbing raw pain had only switched to the other side.
Cold sores galore. Nothing says 'Kiss Me' like an oozing volcano on your upper lip.
Exhaustion so extreme that I've proven that zombies are real to sudden bursts of energy that had me running a half marathon every night.
Weight gain so discouraging and overwhelming that I've proven that I can gain weight by just eating vegetables to weight loss which led to anorexia and wearing a size 10 in juniors, never finding a pair of jeans long enough (leggings I love you), and bruising my hips black and blue from knocking them against the countertop or bumping them along the side of doorway.
Hormone imbalances so up and down I feel like crying when I forget to put ice in my water, throwing the toaster when my bread burns and probably the reason I crave baked potatoes with mustard at 3 in the morning and a bowl of beans with a side of pickle for breakfast.
Joints that burn and ache so bad they itch and have me in a tub full of epsom salts and water so hot it makes my blood boil.
Skin crawling, yes the kind that makes me want to jump out of bed and fly into the other room.
Night sweats that led to sleeping on towels and taking showers in the wee hours of the morning.
Insomnia that had me up baking banana bread for the neighbors at midnight and reorganizing the bathroom cabinets.
Hair loss that had me on the floor of the shower weeping.
Moments of crazy creativity like creating a whole business plan around s'mores and asking your husband to move to Samoa to start it. (It could still work...)
Acne so atrocious I want to hug every teenager with a pimple and tell them that they're still pretty.
Depression so bad that there are not enough scriptures, happy songs, cute babies, disney movies, fluffy carbs or Jesus videos to help me feel okay. Feeling so emotionally wrung out I find myself on the kitchen floor bawling my brains out for the first time in months and not wanting to stop because it just feels good to feel something. anything.
Mania so extreme I've been pinned to the ground in a house full of paramedics and police officers and have had the word "Bexorcism" named after a manic episode.
Blood sugar problems that have made "I'm sorry for what I said when I was hungry" my motto.
Low blood pressure(POTS) that literally had me dragging my face on the floor to get to the next room.
Light sensitivity so severe that going outside makes my eyes water and twitch uncontrollably triggering a migraine for a week.
Muscle twitches that looked like I had swallowed pollyjuice potion.
Seizures that had me curled up on the bathroom floor waiting to die.
IBS so bad I don't go to the bathroom for dayssssss. Nausea that has me in a corner with a mouth full of spit asking myself... "so this is what pregnancy is like?". Throwing up whole pieces of food and swearing I chewed that up before swallowing. Changing into sweat pants before dinner because i'm usually bloated for 3 hours after eating.
Knee problems that have me cringing at the thought of saying my prayers at night and giving myself a high five when I hear them pop.
Sore SORE muscles that I can only describe as CRUEL (ohhhh curse the fibro pain). Knots on knots - in places I didn't even think I could get them, like the heels of my feet, my eyebrows, jaw, the side of my knee and the back of my head. By 3pm I'm lying on the floor or bent backwards over a chair wishing I could get every kid in the neighborhood to come over and pull on any and all parts of my body that will stretch.
Inflammation everywhere, like really, everywhere. My ears even burn.
Encephalitis of the brain that gets so bad I'm grateful for when I can hear my ears ringing and I know I've been laying on one side for too long when my brain gets a heartbeat. Putting pressure on a certain part of my skull triggers uncontrollable feelings of stress, fear, memories, excitement and just about everything else... It's like that video in health class on the surgeon doing brain surgery and poking specific areas of the brain to see what it triggers. Most days I feel I need to melt my head under hot water and wait for my pre frontal cortex to vomit.
Swollen lymph nodes that are literally the size of golf balls and are mistaken for knots. They get that fuzzy, burning itchy feeling that doesn't go away until I drink a gallon of water and lay on a heating pad. I usually throw the towel in when my groin goes aflame.
Sinus pressure, congestion, inflammation and infections so bad and for so long that there's no wonder why I have to dowse everything with hot sauce and salt to taste it.
ADD that makes it difficult to read three words without floating off into who knows what land or concentrate long enough to get through one roll in the board game 'Life'. It's like my thoughts are a game of pinball. I can focus for a couple seconds and then boing, my attention goes flying off to something new.
Such bad circulation my hands and feet turn pale and ice cold and my husband doesn't want to snuggle unless I wear gloves and socks.
Food allergies so random and severe ill get a rash on my calf from something I ate at dinner to looking down at my fingers and seeing that they are the size of sausages because of the yogurt I just ate.
Brain fog that feels like I'm seeing everything under water.  My memory is so poor, trying to remember something from my past is like digging through a hoarders office full of papers stacked high to the ceiling... when I feel like I've found what I'm looking for I realize the paper is blank and I walk away feeling mentally, physically, and spiritually worn out. I forget my birthday, what way is left and how to walk down the, what's that word again? oh. Street. It has me thoroughly convinced that I'm the worst listener on planet earth because a date, a recipe, and a story have to be repeated several times before I get it. I feel like a 4 year old when it comes to reading books and actually making sense of what is going on all while trying to get the words and letters to stay in one spot makes my head spin. Comprehending a picture book gives me a headache and I usually end up craving carbs and a nap.
The nagging voices in my head that tell me every teeny weeny little menial decision I make is the biggest decision of my life. Giving me input on everything from what way to turn, what color shirt to put on, what leg to cross and how many blueberries I should put in my oatmeal for breakfast. Like a nagging school teacher or babysitter telling me, "don't do that" "too loud", "say it". When I try to ignore it it begins repeating quotes, scripture verses or a song lyric over and over again in my head leaving me feeling guilty and destined to end up in hell because I ate an apple instead of an orange or sat at the wrong seat at dinner. Making it almost impossible to discern what really is right or wrong, especially when it is so darn good at mimicing a 'still, small voice'. Some days I end up with my fingers in my ears singing lalala or doing 342 things to drown it out.
My pal paranoia that has me thinking that everything I do, say and think is a vicious cycle of voodoo and it's all taboo. I subconsciously fear the world and everything in it including what I put in my mouth to the color of car I see in front of me. I was terrified to give someone a hug because of the fear that I might give them some of my disease. Some nights i'd pray that someone would come sit on my porch because I was afraid someone was coming to get me. Yes, the boogyman scares adults too...
OCD. I still have a love-hate relationship with this clean freak frenemy. It keeps my kitchen clean but has me organizing the snack pantry, the DVD's and pills alphabetically. There were a certain number of clicks from the blinker that had to go off before I switched lanes, every towel was folded a certain way, every clothes closet was color coded, every shoe was lined up perfectly by style, color and season, and even the tassels on the rug had to be perfectly straight or id lay awake at night tossing and turning with that scratchy feeling in my chest. Sometimes I feel like my life is a perfect example of organized chaos. What's worse is watching people come in my house and stress over leaving something on the counter or dropping something on the floor. I've realized how nice it is to be in someones home where a pair of shoes is out, some toys are at my feet and there are groceries that haven't been put away. It reminds me that they are people and it is okay to be one too.
Ultra sensitivity to almost everything. My finger goes numb when I wear my wedding ring. I feel like I'm carrying a 10 pound chain around my neck when I put on a necklace. My skin breaks out if I touch my nose. My energy changes every time I walk into a different room. Anything other than elastic around my waste feels like I'm suffocating. Being in the heat for longer than 3 minutes had me gasping for air, irritated, weak and wanting to eat lunch again. A persons perfume would make my eyes itch and give me the sneezies. Putting on a headband feels like my brains are going to squeeze out of my ears. Driving in a car that is going too fast leaves me tired. Even eating a handful of grapes gives me a sugar high.
For years having viral counts that go higher then Noah's age.
Then of course there is my constant and closest compadre... the mighty A-bomb - Anxiety. No, not the kind where you need to imagine everyone in underpants to go out in public... It's the anxiety where I feel chronically stressed. Constantly under this invisible pressure, feeling like I need to be doing something ALL of the time. The need to be folding laundry, cooking dinner, pinning, stretching and coloring all at the same time just so I can semi-focus on the TV show I feel so pressured to have to sit down and watch. The pressure that I became so used to feeling that being relaxed felt more like being dead. The anxiety that refuses to let me take a nap, let alone lay down and make out the shapes in the ceiling paint without wanting to rip my chest open. Stress that has me on youtube typing "How do I breath?"(Yes, I'm positive I can hold my breath longer than Michael Phelps.) It's been so constant and familiar that my shoulders have made a home up by ears, my muscles feel so tense they are like strings pulled too tight on a guitar and meditating sometimes feels like having to put together a 1000 piece solid white puzzle before breakfast. I can't seem to get that knot out of my stomach that usually sits right up under my sternum. A lot of the time is feels like I've swallowed a grenade and it's sitting at the base of my throat waiting to go off.
The smallest tasks like brushing my teeth, putting in my contacts and going to the mail box can feel like pushing a boulder twice my size up a mountain.
I lay in bed some nights and feel my feet screaming "you did too much" while I tell myself, "you didn't do enough".

and the list goes on... and on. and on and on and on. and on some more...

Most days feel like I'm waking up to a game of powerball. It's like Lyme is playing with my life, digging through a massive machine full of sickness and serving me my symptoms for the day. "Welp Rebekah, today you've won a nice dose of 'I just got hit by a truck - fatigue', air hunger, 'Don't touch that toast, it'll make you gag and possibly give you hives', heart palpitations, and a 'don't get to comfy in those covers there... you won't need them because you'll have a fever by midnight.' Oh! and because you're so special, we'll throw in an emergency root canal for good measure. Don'r worry though... they have happy gas.

If I had to sum up what I feel like most of the time, it'd be a kid trapped in a 90 year old's body going through puberty. with the flu.

Things are getting better though my friends. Really.
After almost 4 years of IV treatments, blood transfusions, oral antibiotics, herbs and everything else you could think up to try and get rid of all the bugs, viruses and heavy metals, I think I'm doing alright.
There are too many days where I think of my accomplishments and end up feeling like I am taking 1/2 a crawl forward then falling backwards down a flight of stairs. When I feel like I have conquered a certain symptom, 1, 7 or 37 more things pop up. It leaves me feeling discouraged, hopeless and depressed. I somedays wake up in the morning looking forward to bedtime. I stare out the window and try my hardest not to be sad about how slow, dumb and far behind I feel. I am torn between feeling so excited and happy for my friends and family who are having babies, graduating college, holding jobs, waking up when it is still considered morning, eating a cookie without getting sick, walking through target without passing out, and simply living life to feeling absolutely heartbroken that I can't have those same things. Some days I'm completely overwhelmed with the amount of knowledge I think I don't have and not even knowing where to start.  I am not able to truly feel okay until I allow myself to be grateful, think of the good things I have done and how far I've come.
For example:
I don't have to take a hot bath every morning to make it down the stairs. I can grip something without that aching stabbing feeling up my fingers, hands and arms. My shoes go anywhere on the shelf where I can fit them. Mediation is my mojo. I no longer have to rest and catch my breath when I reach the top of my stairs. I am in my 5th chapter of a big kids book. I rarely get bloated after eating unless I eat too much cabbage. The last time I was nauseas was when I got a whiff of bad tuna. I can function just fine without a diet coke. Some mornings I wake up and cancel my alarm before it even goes off. I take a shower without feeling like I've climbed a mountain and deserve a medal (shaving is a whole different ball game). The voices are now just one voice and it stays gone unless I really need a nap. I don't feel like Elsa when I touch something or someone with my cold hands. I exercise at least 5 times a week. I crave hugs. My neck doesn't get sore and stiff after I eat popcorn. I can make it through a full episode without a stack of laundry, my phone or a panic attack. I could sit in the sun and garden like your grandma all afternoon. I go to the doctor maybe once every two weeks instead of every 2 days (and it's usually to be reminded how well I am doing.) My lymph nodes are more around the size of peas instead of golf balls. I go to bed with dishes in the sink. I haven't had a cold sore for over 6 months. I took a nap on Sunday for the first time in 2 1/2 years. I take less than 10 different medicines a day instead of 103. It only takes me maybe 1-2 days to recover from a flight instead of 4. And I no longer fear the world, the dark, the boogyman or sitting still. In fact, I get giddy when I get to go to the grocery store or run to the post office and go to bed early because I'm so excited to go to yoga the next morning.

Yes, I have bad moments, days, weeks and what seems like months and years. Yes, my back still hurts but not nearly as bad as it used to (and ill take it!). I still get scared of how my body will react when I put anything in my mouth. I'm still working on breaking up with anxiety. I still get sad. like really really sad but thats totally okay because if I can get really really sad then I can get really really happy too. I still struggle with how many steps I take in-between the cracks in the sidewalk and where stuff goes in the fridge but that's cool too because its much easier to find the jam.
I still put my face in my hands while crying, laughing, groaning and screaming as I struggle with feeling so close yet so far away from God. I keep having to continually reassure myself that answers will come, even though I spend 74% of my time trying to figure out why this is happening, why such good, bad, ugly, pretty, happy, lonely, crazy and cool people have to suffer, why I just can't feel decent enough to make it through a movie, a date, a meeting or a car ride without needing help and actually getting the courage to ask for it instead of dealing with the painful consequences later. I still feel my head spin in circles as I try and make sense as to why I'm sick and suffocate my mind with questions like "did I do or am I doing something wrong? is God not forgiving me for something? Am I not forgiving me for something? Is this a curse? Something I'm allergic to? Was I too mean to my brothers growing up? Have I eaten too many tomatoes? Did I make a wrong decision? Am I a bad person? A demon? A brat? I continually ask myself, "Is this all in my head?" but realize, well if it were, would it make it any less real?

I drive the knives that think my back is a butchers block, deeper into my body by burdening myself with trying to figure out if God, the universe, my spirit or my body is trying to teach me something and I'm simply not getting it (and if so, how am I supposed to learn anything if I can't even remember what happened 30 seconds ago). I find myself telling my Father in Heaven things like "this is too much" "too fast!" "I really don't think I can do this one..." but then end up on my knees asking for forgiveness for my whimpering and thanking him for the strength he pours down upon me every second of every minute of every day. And although the days drag on when they are bad or go by too fast when they are better, I know that I still have a fantabulous life. I know I have been blessed with a universe full of friends and family that are so cool it's scary.
I am grateful for you. So unbelievable flipping grateful for you. There are not enough loaves of banana bread, plates of cookies, cards or hugs I could give you to express how awesome I know you are.
Thank You.
for visiting me, dropping off happy notes, cookies, strawberries, coloring books, dinner, crocheted zombies, funny kleenex boxes, carved pumpkins, pretty pictures, funny articles, rolls and loads of other goodies. For walking my dog, picking up his dino-dung, giving him showers and dog sitting. For mopping and vacuuming all my floors, unclogging the toilet, doing my laundry, mowing the lawn, pulling the weeds and laying brick in the backyard.  Who run across town to bring me a slurpee, a gallon of milk or a hash brown from McDonald's at 2 in the morning (especially when it's the first thing I've eaten in 2 days). You have brought me flowers, braided my hair when I couldn't lift my arms, rubbed my feet with oils, shared your blood, sit with me in silence when I don't want to talk and give me hugs even when I don't hug back.
To all of the doctors, nurses, chiropractors, therapists and health helpers who make house visits, rearrange appointments to see me, pop the 3-7 ribs back into place every other day, stand on my back to try and get the knots out, bring me donuts during IV's, tell me funny jokes and happy stories to lift my spirits and do all you can to help me survive each day and feel okay.
Mucho gracias to my folks who have filled my freezer with meals, baked me bread, dropped everything and anything to run to Cafe Rio, Costco and the pharmacy. Who have cleaned up the throw up, ran me baths, flown me across the world to receive help for my health, sat in 3 hours appointments with me because I couldn't think or speak straight and jumped on a plane to be by my side during sad and bad times. Who buy me my favorite apple fritter, hot cheeto's and check every store in Utah Valley for a certain bag of chips I had once on a jet blue flight.
Thank you to my angel sister Hannah Belle who I know is slaying my scary demons, giving me spiritual high fives everyday all day and who I can't wait to squeeze with my whole soul and tell her how much I have missed her. I can just imagine her saying, "Oh Kekah, I know. Did you bring me a Reese's?"
Thank you to my body. My body that I have spent too many years cursing for the state i'm in. It has been poked, prodded, pulled on, pushed on, cut open, torn open, stretched, slammed, starved, cracked, bruised, electrocuted, tested, scanned and infused. It has swallowed almost every capsule full of chemicals, vitamins, herbs, spices, supplements, minerals, oils, dirt, bugs and anything else you could think of. It's been on every gluten free, sugar free, dairy free, nut free, egg free, fish free, fat free, nothing but fat, paleo, whole30, and meatless diet. It has tried every cream, tincture, patch, pill and procedure and STILL loves me enough to keep going and keep going strong.  It is one of the greatest blessings I have and although I sometimes tell myself that I am broken, I am mighty glad to be broken inside my body then to be broken without one. It keeps breathing, beating, walking and living and that alone reminds me that there must be something worth living for.
A humungous thank you to my hubby Justin. He is my Samwise. My Ron, Hermoine, Hedwig and Dumbledore all in one. He has quite literally been by my side through ALL of this, even while he's been just as sick and sometimes even sicker. He rubs my feet like Fabio and turns on the food network, HGTV and old english shows because thats usually all I can stand to watch and because that's what real men do. He would risk getting a cold sore just to kiss me, is by far my most favorite flavored lifesaver and still likes me even though I feel like the farthest thing away from the hyper and happy Bekah he fell in love with. He loves me enough to not only share a last name, a bed, french fries, a car, a home and sometimes even his last orange slice, but even his bugs. For that I am grateful and love him all the more.
The greatest and biggest thank you to my Jesus. Who I picture sitting at the edge of my bed on the bad (and not so bad) nights when I really don't want tomorrow, blessing me to be okay and face it like the champ that he knows I am. Who I know puts his hands on my shoulders and gently reminds me to relax as I tell him how much this sucks to which he replies "I know. I really actually do know." I cannot wait to see him, wrap my arms around his neck and thank him for saving me, even from myself. He is the epitome of Awesome Possum.

Thank you all for your prayers, fasting, blessings, hello's, hugs and the "you look fab" when I feel so drab and sad.

The journey isn't over but boy am I grateful to be living my lovely Lindorf life.

When you cannot do what you have always done, then you only do what matters most.


-Rebekah
If you or anyone you know is suffering with any of my same symptoms DO not wait to get help. 
I promise Zeus is not a friend you want in your bed.
Message me, text me, call me or visit your nearest Owl Post and send me a letter.
I not only want to help, I need to help.

www.lymedisease.org 
https://www.youtube.com/watch?v=akULF1vwyVY&feature=youtu.be

Words for friends: Eat less cheese. Dance a little then dance a lot. Sing like Celine. Give your mom a kiss. Don't delay watching that disney movie. ALWAYS be grateful you can pee, even at 4 in the morning. Look in the mirror and say "I love you. You are doing awesome. We totally got this."




1 comment:

  1. Oh, Bekah. I can't even imagine all those not so fun symptoms of lyme disease, but I'm amazing how gracefully you handle it. Heavenly Father definitely gives us trials to make us stronger, and you're a perfect example of that. Keep fighting, keep praying, and keep inspiring the rest of us when we think our lives are so horrible.

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