My Backstory

The purpose of this blog is to keep you posted on my healing process, and this is also a gratitude blog! I want its sentiments to be universal enough for each reader to relate in his or her own way. Plus, I do better when I'm sharing my thoughts than when I bottle them in.

This blog was supposed to chronicle my "now" and my future moments of "now." But as I wrote down my blog URL address for a complete stranger today who needed help, I was told that my backstory might be helpful to many. I don't like to dwell on the past (some parts are ew). But I realize that my backstory might help: with someone's symptoms, with empathy, with being one as humans in this fabulous world.

The following is a history of this illness (ugh, I don't like backtracking or reliving this). Mmmmmaybe I will throw in a few of the lessons I learned too, but I'm trying to stick to facts.

[Warning: it is LONG. I had my husband read it, expecting he'd say, "That's too long for anyone to read." But I was surprised when he said, "It's long, but our story is long, and those who really need to know will get through it." So I guess I'll post the whole thing.]

First, the basics. How did I get Lyme disease? I truly have no idea. I've travelled a lot, camped, hiked, played outside... And I've been bitten in the course of all these years by a lot if critters, just like everyone.

It could have been a nymph (a baby tick, as big as a poppyseed) that just chomped once and then split. It could have been a deer fly that had bitten a deer with Lyme (from a tick). It could have been....ummm, another way that you might think of on your own. I don't know.

Point is, I didn't get the "target" or "bullseye rash" that really only happens on half of people who get bitten (not all ticks carry Lyme, by the way!). I have no memory of ever having a tick on my body. I've only SEEN ONE tick in my whole life.

Some think Lyme is like cold sores (herpes) or shingles (varicella)--that it can be latent until a traumatic event, illness, compromised immunity--you know, something that shakes you up. Lyme isn't a virus though; it's a bacteria.

Acute Lyme disease would be classified as, "A tick bit me, I may have gotten a bullseye rash or symptoms, and I took a month of oral antibiotics. Badda bing, badda boom, I'm cured."

Chronic Lyme disease (and a lot of infections actually) is, "I have no idea why I can't get with the program already. I've been sick for...wait a second, years?! My doctors say I'm fine, but I feel like I'm dying. Will I ever feel better?"

Only a small percent of doctors recognize chronic Lyme disease as a real illness. They belong to a group called ILADS their organization is online--check them out. My doctor is a DO and a naturopathic doctor, and she belongs to ILADS. I am so grateful for her.


Introduction aside now, let's begin. I want to keep this succinct, but I will wax epic (in length, not in awesomeness). If you really want to know my story, buckle up.

I'm a military kid, and happy about it. I lived, travelled, and lodged all over the place. In Europe, it's even ok to sleep in your van, which we did as a family sometimes on roadtrips. I'm happy sleeping on someone else's floor. I've gotten mysterious bug bites from accommodations and travel over the years, but who hasn't?

I was an energetic child. At a family reunion when I was six, I ran past my aunts and uncles who were sitting comfortably and chatting. As my cousins and I zipped past with the energy of the sun, one of my uncles said, "Where do these kids get all their energy?" I couldn't believe what I was hearing and marveled that not everyone could run all day and not get tired. Didn't everyone explode with energy as I did?

I grew up doing tons of activities because of my interests, and I excelled especially in dance. I started ballet at three, discovered modern at fourteen, and Irish at fifteen. I was a valuable member of my high school dance company as the company president and as a choreographer. I danced about 20 hours a week when leading up to a concert. I was the TA (teacher's assistant) for another dance class as well. In one concert, I was in fourteen of the sixteen dances. I had immense endurance and vitality. That was one of the most joyful times of my life.

I won a state-wide dance scholarship and continued dancing at BYU, but I knew I needed to be a nurse. I cried so much the day I had to give up dance as a my daily outlet and love. Dancing is a gift--a gift Heavenly Father gave me to feel supernal joy and closeness to Him in this life, a reminder of Our relationship before I was born. I have a testimony of that.

My brain was equipped for the competitive nursing program, and I spoke at my graduation. All through school I felt my adrenals working overtime, but I didn't know that's what it was at the time. There was no limit to what I could accomplish and how little I could sleep and still be successful. My resume was punctuated by work experience, scholarships, and a research grant, and my GPA was great. I give all the glory to Heavenly Father. He was in every moment. My entire university experience and all those accomplishments are really His. We did it Together.

All my life I've had issues with stress and worry (genetic), but like I said, I have run on adrenaline and achieved a lot (but at what cost?). I didn't know I had limits, at all. At ALL! Isn't that amazing? I figured that out just a few months ago, and it was a real epiphany.

Here's where it started going downhill.

I got married after starting nursing school and was pregnant during my last eight months of school. It was delightful through most of my second trimester. I felt quite good, for being pregnant.

The end of my second trimester is when I started my final semester of school. One of my classes was TEN CREDITS! That should be a crime. But I took the additional two-credit NCLEX prep class and called it good. All my other required credits were done, and I had senior-itis and just wanted to get nesting already. BABY!!!

For capstone, I did two 12-hour shifts a week on a demanding medical-surgical and telemetry floor for a total of 220 hours. It was physically taxing as my weight was a little greater every day. I had a 30-hour research project and paper to write. I finished another research project with a world-renowned nursing professor that I had been working on for a year.  I had to do one thousand NCLEX prep questions and other testing. That's just what I remember, but it was a lot for a big mama. There were over a hundred stairs in a row leading up to campus. But the end was in sight! Bring it!

I started the third trimester fatigue thing that happens and thought, "Well, this is pregnancy." I felt bad about my stress and what it might be doing to my baby. I didn't think of what it might be doing to me.

A week after I graduated in 2008, I had my 34-week visit with the OBGYN, and I had a really high blood pressure. By the way I'd been feeling, I would guess I'd had it for nearly two weeks before that. Preeclampsia, bed rest, weekly fetal stress tests--surprise! My own stress went up as I thought about blood perfusion through a potentially disintegrating placenta to my darling baby.

I was kept at the hospital after a fetal stress test to deliver my baby at 37.5 weeks for a blood pressure of 170s over 110s. Magnesium sulfate was dripped into my veins to lower my blood pressure. It made me feel like I imagine it would feel to be stoned. An epidural was placed to prevent rises in blood pressure due to pain, but my blood pressure tanked when it got inserted. Thinking I was dying, I saw the anesthesiologist inject epinephrine into my IV bag to raise my blood pressure. I felt better in moments. When my reaction to the epidural resolved, my blood pressure was very high. They upped the mag sulfate, and I think they kept it there.

I slept, "stoned," through most of the labor and remember very little from it. My baby was born and was a bit floppy from the mag sulfate (also a muscle relaxer). I was kept on mag sulfate an additional 24 hours...and by extension, so was my baby. She didn't nurse well because she was stoned too. The day after her birth, they whisked her away from me saying that her blood sugar was dangerously low at 32. My taller half stuck to her like glue while I floppily worried. Taking her home was scary because I wondered if I'd be able to feed her well enough to keep her from going hypoglycemic. For a few weeks I woke up every two hours and practically force fed her for forty five minutes because of that initial scare.

On the way home from the hospital, I had chest pain and circumoral parenthesia (numbness around the mouth--a sign of mag sulfate toxicity?). It took several months to feel like I was rid of that stuff.

I passed the NCLEX (national board exam for nurses) when my girl was two months old. Wahoo!!! I'm a nurse!

Two and a half months after my daughter was born, I plunged head first into postpartum depression. It was hellish (yes, I just used that word! And I meant it!).

When my daughter was four months old, I conceived again, with a boy this time. I was delighted! I was still in the throes of depression though and took medicine to help...but it didn't. I breasfed my daughter for six months, struggling to eat for three.

We were extremely blessed to sell our condo at the economic downturn, and we moved into my parents' basement apartment when I was seven months pregnant so we could look for a house that suited our long-term needs. I did not manifest preeclampsia until labor started, and it was mild enough that I could sweet talk the medical staff into not infusing me with mag sulfate.

My second birth was glorious. My boy was born naturally because I felt like I missed the rite of passage that was my first labor and delivery. I wanted to experience it all, and when I did, I felt powerful. I still do. I loved my strong boy and that sacred experience of giving birth naturally.

Postpartum depression continued with about one really bad day in five. I was delighted to have near-twins and to be a mother. I had faith my depression would subside with time as hormones evened out or I got my nutrient stores replenished, or whatever.

We were about to go broke a few months later, and I was prompted by my husband to get a few nursing hours to get us through the probably-short slump. It would be temporary, keep my license active, and maybe it would help lift me out of my postpartum depression.

In 2010, I prayed about it. For the only time in my life, I told God my plan and that I was going to do it because it made sense. I counseled Him, which was very naughty. Still, I felt His assurance and blessing.

I had to go with logic because it went against every instinct I had to wean my boy at seven months and go to work full time nights on the very same floor where I did my capstone. I also weaned myself off my depression medicine; my body felt weird with all the sudden changes.

A lot of crazy things happened at work. It wasn't the kind of crazy I liked, except the telemetry part. I feared I'd bring a lethal pathogen home to my babies. I lived in fear. I was tired always. I tried to be allowed to work days, but was passed over twice. I felt like I was dying, literally. It was traumatic to my  little new-mom, new-nurse soul at this time of my life. Working nights is not normal. Especially when nutrient and sleep depleted already from having and breast feeding near-twins.

While working there, in January 2012, I called in sick one night because I suspected appendicitis. I was right and had it out the next morning. Boo.

That's when the gut issues started...and didn't stop. I lost the NOT-useless organ that inoculates your guts with good bacteria after illness, antibiotics, etc.

I quit that job a few months later. It was killing me to work nights. I went to work in homecare so I could sleep every night. That will help, right?

Then the gut pain started south of my sternum every time I ate. In April 2012 I had a horrible pain that was a 9.5 out of ten on the pain scale (with natural labor being a ten for me). I couldn't bear it and had my taller half take me to the ER out of desperation. They sent me away after an abdominal CT scan and IV pain meds, saying everything looked fine. I was embarrassed and felt like a wimp, but I was sick at home afterward.

I figured out later it was a gallbladder attack. I had a couple more I handled at home because they were less awful. Sometimes the pain radiated to between my shoulder blades.

I had an ultrasound: no stones or problems. I had a HIDA scan which shows how well the gallbladder was functioning. It wasn't. It was paralyzed! The scan induced another attack. Ugh, I hurt thinking about it.

By this time I couldn't bear eating. My surgeon advised we remove it. So, in June, I had my gallbladder removed. It was inflamed, but otherwise ok structurally. I felt bad for getting out, but didn't know what else I could do. That should fix my gut issues, right?

But it didn't. Soon I had bellyaches. Always.

(Pssst--I think I lost both those organs due to Lyme spirochetes that took up residence. I applaud my kind organs for trying and for fighting for me. I owe you little guts a high five so as not to squish you with a hug.)

We moved into a home we designed and built ourselves. Add that to the ball of stress of the past year-plus! But I must say, we love how it turned out!

Homecare was more stressful than my first nursing job. Even though I got to sleep at night, I couldn't for worry, pain, and inability to go back to a regular sleep schedule.

Then I got the best job ever at a surgical center with beautiful people and beautiful conditions. It was less stressful too! I loved it. That should fix me up, right?

But ouch, it didn't. I was too far gone. I got tested for food allergies. In August 2012 I found out about soy and dairy. It made a difference to go off these.

I also got a colonoscopy (clean as a whistle--"come back when you're fifty" and endoscopy (mild esophagitis--"take omeprazole").

In September 2012, I auditioned to dance for the Mormon Tabernacle Choir Christmas Concert after years of not dancing. I was grateful for muscle memory that day--what a miracle! I think I was the oldest girl to make it, and one of the only girls with children! Many dancers were ballet or dance majors at the University of Utah or in high school. It was the tenderest of mercies--a complete joy for me. I still can't believe I got to do that--Thank Thee Father!!!!!!!!!

But it was stressful too. I'd trade shifts with nurses so I could start at 0600 or 0700, get off at 1530 or 1630, and make it in time to dance in the Avenues at 1800! I ate a ton of PB&Js and drank a lot of V8 during this time. Rehearsals went until AT LEAST 9 PM. By the time I got home and unwound enough to sleep, it was late o'clock. Then I'd go to work again the next early morning and do it again, two consecutive nights a week. I missed my taller half and my peeps, but I loved what I was doing and they supported me in it wholeheartedly.

As the concert drew nearer, we moved rehearsals to the conference center and added more days of dancing. I had to talk my body into having as much energy as these young people (wow, did I just say that? Am I that old?!). The choreography kept changing, and there were fittings and other details. It was all so fun. It's an alternate universe I could live in happily, to dance to glorify God all the time. Plus I love getting ready for dance concerts--the costumes and makeup and hair. It was the best dancing venue in the world, too.

This was the busiest time of the year at work, but my coworkers supported my dancing and were very good about helping me get to rehearsal on time. They were awesome. I love those people.

The concert was heavenly. Like really, that's heaven! But when the magical concert ended, I still had persistent and worsening bellyaches. More allergy testing in January 2013 revealed new allergies: gliadin (a component of gluten), meat preservatives, red #40...oh dear, I'm trying to remember more, but I can't just now.

I narrowed my diet more. Eight months later, the intense bellyaches that used to plague me 30 to 45 minutes after I ate subsided. I think my gut lining had healed a lot without gluten. I haven't had gluten since that time, except a nibble off the sacrament bread when it comes around (I hope that's ok).

The narrowing of my diet did help. I ate much better, but my energy was terrible. If a normal functioning day is a 10, I hovered at 4 or 5. At first I chalked it up to dancing for hours every week and working overtime at work while doing the holiday prep and traditions with my family. But when I couldn't get off the couch by mid February 2013, I knew this new level of fatigue might be yet another symptom of...whatever...that I would have to figure out.

I would work, change, lie on the couch, and go to bed, every day, for over a year. I wanted to quit work, thinking it would help. I saw doctor after doctor--they thought I was fine.

My GI doctor told me I have IBS. "That's what we call it when we don't know what you have." Thanks? He also gave me a prescription for an antidepressant. "Sometimes depression manifests in the gut." I never filled it.

The endocrinologist tested and then retested my cortisol. It looked a little high, but he basically said (I paraphrase), "It's fine. You're normal. Don't come back. Have a nice life." Awesome?

My OB said I should try that antidepressant and maybe see a counselor. It didn't feel right. How about no?

My (old) primary doctor shrugged and sent me out the door with samples of a med to help with IBS. To the side effects: ew?

Where is the validation here docs? What am I paying you for? "Have a nice life?" I'm trying!

I was so annoyed. And desperate. And in despair. And fatigued.

This post has a negative energy. Aaaa, I'm sorry. I want this to always be a peppy place. I guess the past wasn't always peppy though, and the past is the point of this post.

I would cry to my husband in desperation at night. "I'm dying! I just know I'm dying! Something's terribly wrong, but no one believes me! I feel barely alive. I can't go on like this! What can I do?!"

My thoughts wandered to death a lot because I felt so near to it. I sometimes even wished I could cease to exist because of the torture I felt; I empathized with Alma the Younger who wished to stop existing. The postpartum depression had never stopped, and it was worse. It had been too long to be "postpartum" anymore though. There was so much pain and unknowing and needing to go on anyway.

I tried my happy face, mantras, fake it til you make, makeup, bright colors, painting my house happy colors, meditation, deep breathing, guided imagery, scriptures, The Secret, vision boards... I still got worse.

I served in the nursery at church with a wonderful friend with gut issues. We compared notes. Several month later, in March 2014, she asked how I was doing and told me about a clinic that was helping her. I made an appointment that very week. I also asked to be put on call as much as possible at work, which was about once a week.

First I saw a naturopathic doctor (ND). She got baseline information and got me started in a good direction. She noticed something the endocrinologist did not: my cortisol (adrenaline) level at midnight is more than fifty times what it should be!!! (Endocrinologist, yo fired. Have a nice life, indeed!) She sent me to a mind-body specialist who is a counselor to help me with stress management.

I was embarrassed to see a counselor, but she helped me a lot. In the course of our visits over a few months, I gained a new respect for myself and got up the guts to cut my hours way down, then eventually to quit when that didn't improve my condition. To work, I had to be vertical, alert, able to stick out long hours. And I just couldn't. I physically couldn't. I was losing weight. I hurt, was too fatigued to feel safe, I was nauseous and having gut issues, I was dizzy and lightheaded....it was hard to be a caregiver while feeling so ill.

I decided my wellness and ability to carry on in serving my family was more important than work. And for that to happen, I had to get better.

When I prayed about whether to quit, it felt like God put me in His lap and wrapped Himself around my balled-up body in a big, warm hug.

So I quit. It was hard, but I knew it was right.

My energy was about a 1.5 to 2 out of 10 average at this point (I kept track and took averages month to month.)

We lost our insurance when I quit and got independent insurance that only covered the DO/ND who owned the doctors' office. She was wonderful; we clicked. She did labs and recommended some supplements to try.

After awhile I went back to her. I think this was August 2014. She sat back after hearing that I was feeling worse and worse. I felt bad for not feeling better despite taking her recommendations, for not being tougher, for not being able to imagine away the symptoms or have the faith to be cured. I felt sheepish and silly, sitting there, feeling like a wuss and like I was complaining like probably every patient did with her every day.

Then she asked, "Now, what all have we done for you since you started seeing us in March? You should be definitely be feeling better by now." I had to think with my foggy brain, but I listed what I could remember.

"Have we tested you for infection?" she asked as she thumbed through my chart. I felt the energy in the room shift with the question as an indescribable knowing pervaded the space."Or [this and that that I can't remember]?

"Ummm," it was hard to recall, "I don't think so?"

"There's something we haven't found yet, but we are going to find it," she said squarely and confidently, a contrast to her usual demure, listening attitude. I knew she believed me, and I could believe her. "We'll run these tests and see what happens."

"And what if they're all negative," I asked, feeling like it came out whiny.

"Let's just do this first. Let's not get too far ahead of ourselves, okay?" She has the most warm, kind countenance. I love that about her.

We tested for cytomegalovirus, Epstein-Barr, E. Coli, a whole long list. It's weird to pray for something to please come back positive, but I did.

They were negative, except for one. Lyme disease was a big fat maybe. It showed exposure, but not current infection.

My doctor recommended I do a second Lyme test called the iSpot Lyme test which would show whether I had a current, raging infection. Two tubes of blood were overnighted to a lab in California, probably to be grown out on petri dishes because it took three weeks to get results.

And
They
Were
POSITIVE!!!

I rejoiced!!! This is the moment I had waited for!!! I'd passed all the stages of mourning already after years of struggle, and I was like, "BOOYAH! It's Lyme! What do I have to do? When do I start? Let's DO THIS THANG!! I'm ready!"

I was relieved suddenly, from years of blaming myself:
-For lack of faith?
-For eating the wrong food?
-For not listening to/respecting my body?
-For potentially exposing myself to illness at work instead of being with my babies?
-For not learning my now how to deal with stress
-For complaining or imagining: was it all in my head?
-for what I called "junk DNA" (I'm sorry ancestors!)
-for not getting a grip on my depression and emerging, intense anxiety and occasional panic attacks (Lyme goes for the brain, yo! And hard! It's not you, it's the Lyme!)

All that self-punishing guilt WAS GONE! I was validated. I had been putting up a fight all this time with all the resources I did--then didn't--have! No wonder I felt so badly. I was not imagining things. It brings me to tears. All that anguish over all those symptoms was gone.

It wasn't my fault. It just happened. It was in the pack of trials and blessings that Heavenly Father and I put together before I backpacked my way down here to earth. It has meaning and opportunities. It's a joy--the hard part of opposition that can be compared to incomprehensible wonders ahead.

My doctor said I had an "illness." My doctor said I had "chronic Lyme disease."

This is LIBERATING!!! I don't have to pretend to be well, because I am, in fact, sick. Fact! I have issues that I can't control. I have bad days because I'm sick, not because I have a bad attitude or bad coping mechanisms or no faith. Oh, thank goodness. I can't pretend it's not there, because it is, and it will be for awhile. I accept that. I work with where I am. I've dropped expectations.

Lyme is tricky because there is no ONE treatment protocol that works for everyone. My doctor is intuitive and close to the Spirit, and I trust her. We're strengthening my immune system with ozone and herbs, killing the Lyme from a few different angles with a few classes of IV antibiotics (yay PICC line!), and dismantling the Lyme spirochetes' houses that they've built in my guts ("biofilm" I think it's called?) with herbal drops, proven by research. I really think it's helping, because I feel awful! We're shaking up that Lyme and so I'm experiencing symptoms more intensely than before with every treatment. They be running for their lives, them spirochetes.

That brings us to the present. Now you know how I got here. If anything sounds familiar, consider having the iSpot Lyme test done.

Lyme is "the great mimicker."  It can manifest as gut issues, migraines, muscle spasms, joint problems, neurological issues, psychological disorders, seizures...you name it. Many people are diagnosed with an autoimmune disease or other disorder like fibromyalgia, Crohns disease, chronic fatigue syndrome, depression, any number of things before Lyme is discovered.

I have an autoimmune disease too, but I expect that as the Lyme is treated, the autoimmune disease will resolve itself. Lyme brings out autoimmune diseases--surprise!

I also have some genetic mutations that cause problems, but I won't write about them here. You can google MTHFR (affects nutrient absorption and neurotransmitter production), MAOA, and COMT (affects ability to detoxify and break down adrenaline--I can't do either) if you want to know more.

That's my story! I cherish the journey I've had so far because I came to know Heavenly Father and Jesus Christ better, I came to know myself better, and I came to know others' struggles much better. But boy am I glad that part is behind me!!! Aaaaack! It was rough.

Ew. And yay!

I look forward to the good things to come! And whatever it is, it IS good! Everything God gives us is good!!!!!