The hardest part about a trial is not knowing how long it will last. I think, "When will things get back to normal and be good again?"
As an example, after several months of postpartum depression, I wondered: Will it be six more months? Will it be a year? If I knew, I could plan my life: lower my expectations, say no to social things on bad days, admit to it, defend my resting space, maybe seek better treatment...
I thought if I could just be given an estimate from The Lord about how long the trial would last, I'd deal better with the trial.
We all may naturally do this, but there are actually flaws with this kind of wondering. Here are a few I have tried to overcome:
1) Having expectations is a big one (especially for a type A, overachieving, goal-driven, plan-making perfectionist like me). In times of disappointment, crisis, or grief, drop those expectations. No, don't lower them. Drop them completely, and watch to see what God has planned for your life. His plan is better and will help you grow in ways you can't imagine or plan for yourself. Since everything He gives us is good, you can "expect" the optimal outcome (whether in this life or the next) if you let God take charge of your life. This requires not worrying at all about how things are working out right now!
2) People-pleasing by trying to cover up the trial completely is another flaw. In appropriate situations, just be honest and vulnerable, but also stand up for who you are. People will either understand or judge, but it doesn't really matter what they think. Others may notice your countenance of self-knowing and peace, and they should respect your new boundaries.
Listen to the Spirit, not your fears. Often the first answer to your prayers is the right answer--you know, the first feeling of peace you get before the fear sets in. Follow that first feeling and be at peace.
3) Seeking a timeline does not help you trust The Lord day to day for your support. It does not build faith. Instead it creates feelings of despair, hopelessness, anger, depression, being lost, being forsaken, and any other negative emotion as you step further away from His loving care and support. That's no way to live! Do not counsel The Lord. Stay close to The Lord, even if you feel untidy and imperfect. Go back to Him if you strayed; He rejoices in the lost being found! We are all lost sometimes, and we are all His children. Sometimes we will act childishly or stumble and fall. But He loves us with the protective love of a parent whose baby is learning to walk. He helps us up, dusts us off, comforts us if we are hurt or angry or frustrated, and then lets us try again and again and again and again and again, always there to compassionately comfort and help us.
Awhile ago, I kind of gave up my own will and plan and built a raft in my mind out of trust and belief. I ride it so I can stop trying to control everything and let God can take me where He wants me to go. Rafts are hard to steer, so I drift: I stay in communication with Heavenly Father, and He changes the waves and winds to show me beautiful vistas (like epiphanies) or direct me through storms (so I can gain better faith and belief). Sometimes He and I sit on the raft together, and I talk while He listens. I fall into some of those flaws I talked about, and Heavenly Father reminds me with His love of the beauty He has ahead for me. Then I feel better and can be at peace again.
The wait is worth it. The wait is "but a small moment; and if thou endure it well, God shall exalt thee on high" (Doctrine & Covenants 121:8).
So whatever the wait, rejoice in it. The wait means we are getting somewhere, at least on the inside.
I wasn't going to include this, but here is a good story from my life that illustrates how waiting works.
My second child was born naturally and rapidly. The contractions seemed to be 90 seconds of surging with 30 seconds of rest. It was difficult, but doable to a point. And then suddenly, it got real, and it didn't feel doable anymore. I was frantic with the discomfort in my body, and though I had only moaned to this point and sort of kept my cool, I started wriggling and gasping out, "I can't! I can't! I just can't do it!"
Then my experienced labor nurse said my name firmly, then cheerfully countered, "You ARE doing it!!"
She was right. That most difficult of moments was when I was making the most essential and rapid progress. The pain eased with pushing just minutes later, and my son was born almost immediately. The pain was a memory.
We can't give up. And when the times come when we can't see an end, and things are getting real, and our discomfort throws us into a frantic panic---well, I think that is a good sign. It means we're making essential progress and passing the test. We're almost over that hump. We're being trusted to handle something we think we cannot handle. The sun is about to come out. Relief or hope is around the corner!
From my experience, sometimes the relief is not large. It's just a fraction of a degree. An ounce we can suddenly add to the dumb bells we heft. A slight lift in the spirit that helps us go on. Rarely have I had a miraculous lifting of my burdens...it's more like an added bit of strength.
Jeffrey R. Holland said, "Don't you quit. You keep walking. You keep trying. There is help and happiness ahead... You keep your chin up. It will be all right in the end. Trust God and believe in good things to come" ("An High Priest of Good Things to Come," Oct 1999).
I know this is true! Don't question the timeline. Just enjoy where you are and where God is leading you. Appreciate that He trusts you to make it there. You ARE doing it!
Tuesday, October 28, 2014
Sunday, October 26, 2014
Couch Model
That's an afghan I've been making. It still needs some tucking in of stray yarn pieces, but I made that all while being a sickie on the couch over about a month. It is made from leftover, random yarn and donated skeins too (thank you!). It complements my house, which was makes me giddy.
Maybe there's a market for sleepy couch models who crochet cozy blankets. I might could rock that. Let me know if you have connections. (I jest.:)
Saturday, October 25, 2014
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!!!!!
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!!!!!
Thursday, October 23, 2014
PICC Line: Conquered!
Tuesday, October 21, 2014
Food
Last week, I had a food rant. It didn't achieve anything, it was the first in a few years, it was about two minutes long, and it went something like this:
"Waaaah! I want a cinnamon roll. I want Cafe Rio. I want Wisconsin cauliflower soup. I want buttered toast. I want salsa. I want to eat whatever I want and not have to check ingredients. I want to eat out. I want potlucks to be okay. I want to feel full. I want cinnamon bears. I want Olive Garden salad and breadsticks and pasta. I want to travel and eat any food I want instead of bringing a pantry wherever I go!"
My relationship with food has changed with time as it has felt more and more and more like an enemy with each new food intolerance and recurring-to-constant bellyaches, ranging in severity from annoying to wondering if I was truly, truly dying.
I've remarked many times that I wish I could plug myself into the wall overnight to charge, like my cell phone. But then I remember how grateful I should be to ingest food! Plus, God could have given us an easy system to recharge, but He expects us to figure out how to eat three times a day, 365 days a year. What a challenge and privilege. (But sometimes I'd still like to request some manna.)
First I looked at forbidden foods as worth the occasional bellyache, then with longing as bellyaches became not worth it, then with complete disinterest. But during this rant, I wanted to binge on all of it, just once. I blame hormones. And hunger. I was "hangry."
This is how I eat now:
I eat the Paleo way because it is helping me so much. Paleo is meant to reduce inflammation. Some think because I eat the Paleo way that I am a carnivorous carb hater. I do not eat Paleo to be picky, snooty, or condescending. I resist fads, but it was recommended for me to try...and for me, right now, it works. With my food allergies I was almost down to the Paleo diet without even realizing it. It's nice to have a label now for the way I eat.
Paleo is grain-free, legume-free (including soy), dairy-free, and sugar-free. It consists of fruits, vegetables (but no corn; and no peppers or tomatoes for me), meats, nuts, seeds, and some naturally occurring sugars sometimes like raw honey, coconut sugar, or pure maple syrup.
Interestingly, as a very young adult, I recognized my poor eating habits of the time and prayed to Heavenly Father to help me change. I asked for a desire to enjoy vegetables and good foods so I could magnify the body He gave me with good health and pass healthy habits to my future family.
I actually hoped for an instant change--that I would suddenly like carrots, crave broccoli, and prefer fruit to fruit snacks. When it didn't happen all at once, I'd forget about it. Then after lots more bad food choices, I would supplicate again.
Well, wouldn't you know that YEARS later, my body tolerates only those healthy foods I desired to crave in the old days. I'm a little extreme right now, but I acquired a taste for nutrient-dense food out of necessity. My guts feel much better. I seek out carrots, chomp on homemade sauerkraut, and eat apples like they're candy. (Diminishing taste receptors with age helps; carrots used to taste like dirt to me as a kid, and now I eat them just fine.) My chocolate chip cookies are made with almond flour, and I feel justified in having them for breakfast sometimes. Hello protein!
Lyme manifests differently in different people, but my gut has been greatly affected. In the mystery hunt before my diagnosis, my family made changes in the way we eat.
My family eats much better than we did, say, three years ago. They don't always eat like me, but we are all better off because of the enhanced food awareness. My taller half bought Doritos about a year ago after not having them for a very long time, and he said all he could taste was chemicals. Over time I think our bodies slowly detoxed from food chemicals as a family, and we found ourselves sometimes blatantly tasting the sugars, preservatives, artificial colors, artificial sweeteners, and artificial flavors in our foods and "food-like products."
It hit me just the other day, that in His own time and in His own way, God has surely been answering my prayer. I have come so far! I am grateful for this journey of food challenges just for that blessing alone. Plus, I've picked up a lot of interesting food ideas along the way that I'll keep even if I can eat anything one day (example: Paleo pizza crust es delicioso).
What blessings come from trials! This is another testament to me that everything Heavenly Father gives us is a blessing. Anything He gives us that brings us closer to Him is also a blessing (pssst, that includes our trials).
I'm grateful for answered prayers. This isn't the journey I expected to begin desiring good food, but I feel like I've paid the price as much as I could, and I cherish this journey because of the things I've learned and the effort I've given. I have earned this newfound desire for wellness.
Thank Thee, Father!
"Waaaah! I want a cinnamon roll. I want Cafe Rio. I want Wisconsin cauliflower soup. I want buttered toast. I want salsa. I want to eat whatever I want and not have to check ingredients. I want to eat out. I want potlucks to be okay. I want to feel full. I want cinnamon bears. I want Olive Garden salad and breadsticks and pasta. I want to travel and eat any food I want instead of bringing a pantry wherever I go!"
My relationship with food has changed with time as it has felt more and more and more like an enemy with each new food intolerance and recurring-to-constant bellyaches, ranging in severity from annoying to wondering if I was truly, truly dying.
I've remarked many times that I wish I could plug myself into the wall overnight to charge, like my cell phone. But then I remember how grateful I should be to ingest food! Plus, God could have given us an easy system to recharge, but He expects us to figure out how to eat three times a day, 365 days a year. What a challenge and privilege. (But sometimes I'd still like to request some manna.)
First I looked at forbidden foods as worth the occasional bellyache, then with longing as bellyaches became not worth it, then with complete disinterest. But during this rant, I wanted to binge on all of it, just once. I blame hormones. And hunger. I was "hangry."
This is how I eat now:
I eat the Paleo way because it is helping me so much. Paleo is meant to reduce inflammation. Some think because I eat the Paleo way that I am a carnivorous carb hater. I do not eat Paleo to be picky, snooty, or condescending. I resist fads, but it was recommended for me to try...and for me, right now, it works. With my food allergies I was almost down to the Paleo diet without even realizing it. It's nice to have a label now for the way I eat.
Paleo is grain-free, legume-free (including soy), dairy-free, and sugar-free. It consists of fruits, vegetables (but no corn; and no peppers or tomatoes for me), meats, nuts, seeds, and some naturally occurring sugars sometimes like raw honey, coconut sugar, or pure maple syrup.
Interestingly, as a very young adult, I recognized my poor eating habits of the time and prayed to Heavenly Father to help me change. I asked for a desire to enjoy vegetables and good foods so I could magnify the body He gave me with good health and pass healthy habits to my future family.
I actually hoped for an instant change--that I would suddenly like carrots, crave broccoli, and prefer fruit to fruit snacks. When it didn't happen all at once, I'd forget about it. Then after lots more bad food choices, I would supplicate again.
Well, wouldn't you know that YEARS later, my body tolerates only those healthy foods I desired to crave in the old days. I'm a little extreme right now, but I acquired a taste for nutrient-dense food out of necessity. My guts feel much better. I seek out carrots, chomp on homemade sauerkraut, and eat apples like they're candy. (Diminishing taste receptors with age helps; carrots used to taste like dirt to me as a kid, and now I eat them just fine.) My chocolate chip cookies are made with almond flour, and I feel justified in having them for breakfast sometimes. Hello protein!
Lyme manifests differently in different people, but my gut has been greatly affected. In the mystery hunt before my diagnosis, my family made changes in the way we eat.
My family eats much better than we did, say, three years ago. They don't always eat like me, but we are all better off because of the enhanced food awareness. My taller half bought Doritos about a year ago after not having them for a very long time, and he said all he could taste was chemicals. Over time I think our bodies slowly detoxed from food chemicals as a family, and we found ourselves sometimes blatantly tasting the sugars, preservatives, artificial colors, artificial sweeteners, and artificial flavors in our foods and "food-like products."
It hit me just the other day, that in His own time and in His own way, God has surely been answering my prayer. I have come so far! I am grateful for this journey of food challenges just for that blessing alone. Plus, I've picked up a lot of interesting food ideas along the way that I'll keep even if I can eat anything one day (example: Paleo pizza crust es delicioso).
What blessings come from trials! This is another testament to me that everything Heavenly Father gives us is a blessing. Anything He gives us that brings us closer to Him is also a blessing (pssst, that includes our trials).
I'm grateful for answered prayers. This isn't the journey I expected to begin desiring good food, but I feel like I've paid the price as much as I could, and I cherish this journey because of the things I've learned and the effort I've given. I have earned this newfound desire for wellness.
Thank Thee, Father!
Monday, October 20, 2014
Miracle Weekend
I'm, like, impaired or something, because I created this cute post with pictures, and then the pictures disappeared. I tried three or four times to make it work, but I'm, like, impaired or something! You guys would have been like, "Aw, cool, pictures!" But now you get all text...surprise!
On Friday morning, my brain was made of oatmeal. I couldn't decide anything, process well, or remember. It was weird. I felt like roadkill (that's my new expression I came up with a few days ago. Charming, but accurate.)
That afternoon I had double-whammy IV therapy. I played the glad game, and my taller half took a turn in the massage chair.
We took the long way home through the mountains and stopped at some springs. Aaron insisted I ride in the wheelchair. I protested, but then I stood and realized he was wise in his request. I could have fallen in the water had I been on my feet just then. Yay for my wheels! I win.
There was a downhill part where I whooped inappropriately for the venue and said, "Hey Izma! Put your hands in the air!" I'm sure the people around the area were envious of my thrill ride.
When we got home, I got my adrenaline running so I could get gussied up for the book signing of my friend. It was thrilling...I even curled my hair a little.
The book launch was awesome. I've never been to an event like that. It took place in a twisty old English-type bookstore that you might find on Diagon Alley. My friend talked about the book, and it was fantastic. I was inspired by the concept of the book and got chills when part of it was read aloud. You go girl...if you're reading this!
It was a girls' night out with my sister-in-law (also an author) and niece. We had so much fun! That adrenaline served me well and helped answer my prayers because I rrrrreally wanted to go. (The book is Remake by Ilima Todd, by the way, and so far it is fantastic! BUY IT NOW.)
The next day, I went to support another friend who got married! It was a miracle I was able to be vertical at this point, having had big IV treatments, a date, and a GNO the night before. But it was lovely to support my friend and meet two of my missionary sister's former companions. There was love all around! I felt blessed. And afterward, my little peeps and sweetheart got ice cream. It was great.
On Sunday it started to catch up with me. I just need a recliner and dimmed lights at church, that's all. I--read that again--I, myself, made dinner of corned beef and cabbage (my ancestral DNA digs this stuff). [Let me insert here that the electric pressure cooker I used to cook it is beyond my ancestor's wildest imaginings, and I love it!!! That little droid has answered so many food prayers.]
I accidentally took a three hour nap afterwards, and then we headed out of town for a family overnight shindig. I was useless, tired, and not helpful the whole time. But it was restful for me, and I got to visit with family and work on my patchwork afghan, ba-BAM.
The miracle here is that I was able to physically do so much. Like seriously, sooooo much--more than could normally happen in a month maybe, as far as getting out, all in ONE weekend! I was so overwhelmed at the beginning of the week as I realized there were so many wonderful things I really wanted to do all in one weekend...and it's like God put a bonus in my energy allowance and let me feel quasi-normal for those events. I feel so, so grateful. Thank Thee, Father!
On Friday morning, my brain was made of oatmeal. I couldn't decide anything, process well, or remember. It was weird. I felt like roadkill (that's my new expression I came up with a few days ago. Charming, but accurate.)
That afternoon I had double-whammy IV therapy. I played the glad game, and my taller half took a turn in the massage chair.
We took the long way home through the mountains and stopped at some springs. Aaron insisted I ride in the wheelchair. I protested, but then I stood and realized he was wise in his request. I could have fallen in the water had I been on my feet just then. Yay for my wheels! I win.
There was a downhill part where I whooped inappropriately for the venue and said, "Hey Izma! Put your hands in the air!" I'm sure the people around the area were envious of my thrill ride.
When we got home, I got my adrenaline running so I could get gussied up for the book signing of my friend. It was thrilling...I even curled my hair a little.
The book launch was awesome. I've never been to an event like that. It took place in a twisty old English-type bookstore that you might find on Diagon Alley. My friend talked about the book, and it was fantastic. I was inspired by the concept of the book and got chills when part of it was read aloud. You go girl...if you're reading this!
It was a girls' night out with my sister-in-law (also an author) and niece. We had so much fun! That adrenaline served me well and helped answer my prayers because I rrrrreally wanted to go. (The book is Remake by Ilima Todd, by the way, and so far it is fantastic! BUY IT NOW.)
The next day, I went to support another friend who got married! It was a miracle I was able to be vertical at this point, having had big IV treatments, a date, and a GNO the night before. But it was lovely to support my friend and meet two of my missionary sister's former companions. There was love all around! I felt blessed. And afterward, my little peeps and sweetheart got ice cream. It was great.
On Sunday it started to catch up with me. I just need a recliner and dimmed lights at church, that's all. I--read that again--I, myself, made dinner of corned beef and cabbage (my ancestral DNA digs this stuff). [Let me insert here that the electric pressure cooker I used to cook it is beyond my ancestor's wildest imaginings, and I love it!!! That little droid has answered so many food prayers.]
I accidentally took a three hour nap afterwards, and then we headed out of town for a family overnight shindig. I was useless, tired, and not helpful the whole time. But it was restful for me, and I got to visit with family and work on my patchwork afghan, ba-BAM.
The miracle here is that I was able to physically do so much. Like seriously, sooooo much--more than could normally happen in a month maybe, as far as getting out, all in ONE weekend! I was so overwhelmed at the beginning of the week as I realized there were so many wonderful things I really wanted to do all in one weekend...and it's like God put a bonus in my energy allowance and let me feel quasi-normal for those events. I feel so, so grateful. Thank Thee, Father!
Monday, October 13, 2014
Priorities
For the recovery time after my son was born, my mom gave me a pink, fuzzy bathrobe that's like a snuggie reversed. I still use it by putting it over whatever I'm wearing to be toasty warm. It's hard to get out of that pink, fuzzy bathrobe on many days, but I can almost always upgrade to a maxi skirt, yoga pants, or jeggings with a warm sweater or scarf. (Comfort and toastiness are priorities to me.)
Today I had a plan of to-dos but got to enjoy some Ta-Das instead, and I did it all in that pink, fuzzy bathrobe. Now I'm sitting here, recovering from my decidedly right choices.
My son got some extra Mom energy from me today, because I had it! We changed his simple bedding (with his favorite character Woody on it--excitement all around), tidied his room (he loves a clean room), and got him dressed ("Mom, I wuv this shirt! It's my favorite shirt ever!"). All this led up to what he's been wanting the most: to have his car track from Christmas set up. It worked out nicely.
I got a couple small loads of laundry in during this. Then I planned to use the sauna while my son played, buuuuut....my energy allowance ran out. Surprise!
It's ok though. Look at everything I've done! That's more than most mornings, or even days. It's unpredictable how much I'll be able to do, so I have learned to roll with it.
My energy is like an allowance; if I spend it all in one place, I get to wait for awhile to get paid again. Even though the allowance has gotten slimmer and slimmer (and when I will run out is always a grand surprise), I still have allowance, which is very cool indeed.
The happiness of my son as we worked and played together is the Ta-Da that trumps any of my to-dos. Even as I reclined here, he popped in to update me on his cool track (with cars I repaired twice bit still are only crawling). Now he's sitting with me playing with the cars.
This pink, fuzzy bathrobe is great for snuggling, even though he's not a baby anymore.
This pink, fuzzy bathrobe worn midday used to invoke feelings of failure and disappointment of not getting enough done. Now I wear it in complete comfort, knowing I spent my morning the right way. The happiness in my boy's face proves that.
I'm feeling a little boost now. It's time to go race these cars!
Today I had a plan of to-dos but got to enjoy some Ta-Das instead, and I did it all in that pink, fuzzy bathrobe. Now I'm sitting here, recovering from my decidedly right choices.
My son got some extra Mom energy from me today, because I had it! We changed his simple bedding (with his favorite character Woody on it--excitement all around), tidied his room (he loves a clean room), and got him dressed ("Mom, I wuv this shirt! It's my favorite shirt ever!"). All this led up to what he's been wanting the most: to have his car track from Christmas set up. It worked out nicely.
I got a couple small loads of laundry in during this. Then I planned to use the sauna while my son played, buuuuut....my energy allowance ran out. Surprise!
It's ok though. Look at everything I've done! That's more than most mornings, or even days. It's unpredictable how much I'll be able to do, so I have learned to roll with it.
My energy is like an allowance; if I spend it all in one place, I get to wait for awhile to get paid again. Even though the allowance has gotten slimmer and slimmer (and when I will run out is always a grand surprise), I still have allowance, which is very cool indeed.
The happiness of my son as we worked and played together is the Ta-Da that trumps any of my to-dos. Even as I reclined here, he popped in to update me on his cool track (with cars I repaired twice bit still are only crawling). Now he's sitting with me playing with the cars.
This pink, fuzzy bathrobe is great for snuggling, even though he's not a baby anymore.
This pink, fuzzy bathrobe worn midday used to invoke feelings of failure and disappointment of not getting enough done. Now I wear it in complete comfort, knowing I spent my morning the right way. The happiness in my boy's face proves that.
I'm feeling a little boost now. It's time to go race these cars!
Sunday, October 12, 2014
Autumn for the Win!
For the beauty of the skies,
For the love which from our birth,
Over and around us lies,
Lord of all, to Thee we raise,
This our hymn of grateful praise."
Saturday, October 11, 2014
Snapshot of a Treatment Day
10/10/14
I thought you would be interested in reading what a treatment day is like. They happen twice a week at this point, and the days in between I recover and work on things with my hands (while reclining on a squishy, comfy couch:).
The combination of the medicine I am on and "Lyme brain" (foggy, forgetful, slow reaction time) make it so I feel unsafe driving. I brake a little too late and feel dazed, like I'm in a dream. I wouldn't want me driving on the roads if I was another driver.
So I enlist people who love me to drive me 45 minutes to the place where I get poked.
Today my husband took time off work, packed up the kids, dog, and wheelchair, and made a grand time of it.
I am trying to switch up IV sites to reduce scar tissue, and I was poked twice because of this. I'm not afraid of needles so long as I don't have to watch it being inserted.
We did the ozone treatment first. 60 cc (2 ounces) of blood is drawn (with heparin in the syringe), mixed with ozone (look it up), and dripped back into me. The tubing runs through UV light. These measures basically turn my blood into stealth Lyme-fighting ninja blood. This treatment makes me ever so tired.
This week started a new phase in my treatment. I'm off oral antibiotics now (thank goodness--my guts were brave but couldn't handle them in the end). We're starting a IV antibiotics now--yay.
After the ozone-infused blood (which is super bright red--yay oxygen) finished dripping, the phlebotomist changed lines and dripped in an antibiotic. This makes me exceedingly tired, weak, wobbly--a good sign that the Lyme is being attacked. I feel like I've had little warriors working on the Lyme before this, and the IV abx are like a grand army that comes to attack twice a week. Yeehaw!
We'll change up the abx every couple weeks to a different class. This will kill the strains at a few different angles. Die, Lyme, die!
This took a couple hours. My family and dog went to play in a state park. A friend who was two minutes away when I texted her randomly popped in almost immediately. She and I are the kindredest of spirits--old study buddies who know each other's minds and hearts like the back of our hands. It was sweet, sweet, sweet to see her! It made my whole year. We lounged in squishy chairs like we did in the library so many years ago and chatted like nothing had changed--yet everything has! I'm growing to be more like her, which I love--more chill and c'est la vie. What a great friend. She also gave us our dog a year ago and got to say hi to her when she left.
It took about 2 1/2 hours of infusion time to finish, but when I left I wished all my office buddies a good weekend. They each have their own nicknames for me...we're a cool, weird little family. :)
My taller, better, handsomer half drove us through the stunning canyon to arrive at our kids' favorite waterfall. I took the kids there on my own this summer once and seriously almost died from exhaustion from the short walk/hike that leads there. It's asphalt and almost even. But my muscle fibers are so pooped out lately, and ten times weaker since getting sicker and also starting treatment.
My sweetheart had the new wheelchair in the back of the car (I got one!!!) and steered me to the waterfall. Our dog is half husky and pulled me with glee and a great sense of duty most of the way. What a girl.
Everyone played in the water while I parked it next to the shallow area. I was cold (I always am), but so happy. The treatments made me so grateful for those wheels. I basked in perfect weather and the sights, sounds, and smells of nature. It was a beautiful time for me.
On the way back I thought I better not let our dog pull me as there were some downhill areas. Then I figured out that either I'd get friction burns on my hands from the wheel grips or the spokes of my wheels would take my fingers off (because of going downhill, you know...I'm great on even surfaces). So my taller half handled our silly dog AND me. Our children held hands ahead of us, clutching favorite rocks in their free hands. They are the cutest little people.
When we got home, I changed and lied down. That's standard for me. I get Lyme brain to the max and weak everywhere after treatments...for a few days. Then I go to my regular level of feeling ew. Normally we don't have an outing after I've had infusions, but it was worth the effort (even though I didn't do much) to get out. I'd do it every time if we could.
We had a great time. I love getting out with my family, seeing old friends, and making strides toward wellness. :) It's grand.
I thought you would be interested in reading what a treatment day is like. They happen twice a week at this point, and the days in between I recover and work on things with my hands (while reclining on a squishy, comfy couch:).
The combination of the medicine I am on and "Lyme brain" (foggy, forgetful, slow reaction time) make it so I feel unsafe driving. I brake a little too late and feel dazed, like I'm in a dream. I wouldn't want me driving on the roads if I was another driver.
So I enlist people who love me to drive me 45 minutes to the place where I get poked.
Today my husband took time off work, packed up the kids, dog, and wheelchair, and made a grand time of it.
I am trying to switch up IV sites to reduce scar tissue, and I was poked twice because of this. I'm not afraid of needles so long as I don't have to watch it being inserted.
We did the ozone treatment first. 60 cc (2 ounces) of blood is drawn (with heparin in the syringe), mixed with ozone (look it up), and dripped back into me. The tubing runs through UV light. These measures basically turn my blood into stealth Lyme-fighting ninja blood. This treatment makes me ever so tired.
This week started a new phase in my treatment. I'm off oral antibiotics now (thank goodness--my guts were brave but couldn't handle them in the end). We're starting a IV antibiotics now--yay.
After the ozone-infused blood (which is super bright red--yay oxygen) finished dripping, the phlebotomist changed lines and dripped in an antibiotic. This makes me exceedingly tired, weak, wobbly--a good sign that the Lyme is being attacked. I feel like I've had little warriors working on the Lyme before this, and the IV abx are like a grand army that comes to attack twice a week. Yeehaw!
We'll change up the abx every couple weeks to a different class. This will kill the strains at a few different angles. Die, Lyme, die!
This took a couple hours. My family and dog went to play in a state park. A friend who was two minutes away when I texted her randomly popped in almost immediately. She and I are the kindredest of spirits--old study buddies who know each other's minds and hearts like the back of our hands. It was sweet, sweet, sweet to see her! It made my whole year. We lounged in squishy chairs like we did in the library so many years ago and chatted like nothing had changed--yet everything has! I'm growing to be more like her, which I love--more chill and c'est la vie. What a great friend. She also gave us our dog a year ago and got to say hi to her when she left.
It took about 2 1/2 hours of infusion time to finish, but when I left I wished all my office buddies a good weekend. They each have their own nicknames for me...we're a cool, weird little family. :)
My taller, better, handsomer half drove us through the stunning canyon to arrive at our kids' favorite waterfall. I took the kids there on my own this summer once and seriously almost died from exhaustion from the short walk/hike that leads there. It's asphalt and almost even. But my muscle fibers are so pooped out lately, and ten times weaker since getting sicker and also starting treatment.
My sweetheart had the new wheelchair in the back of the car (I got one!!!) and steered me to the waterfall. Our dog is half husky and pulled me with glee and a great sense of duty most of the way. What a girl.
Everyone played in the water while I parked it next to the shallow area. I was cold (I always am), but so happy. The treatments made me so grateful for those wheels. I basked in perfect weather and the sights, sounds, and smells of nature. It was a beautiful time for me.
On the way back I thought I better not let our dog pull me as there were some downhill areas. Then I figured out that either I'd get friction burns on my hands from the wheel grips or the spokes of my wheels would take my fingers off (because of going downhill, you know...I'm great on even surfaces). So my taller half handled our silly dog AND me. Our children held hands ahead of us, clutching favorite rocks in their free hands. They are the cutest little people.
When we got home, I changed and lied down. That's standard for me. I get Lyme brain to the max and weak everywhere after treatments...for a few days. Then I go to my regular level of feeling ew. Normally we don't have an outing after I've had infusions, but it was worth the effort (even though I didn't do much) to get out. I'd do it every time if we could.
We had a great time. I love getting out with my family, seeing old friends, and making strides toward wellness. :) It's grand.
Monday, October 6, 2014
Favorite Things List!
I feel much worse today physically. My kids are on their third movie of the afternoon because I feel crummy and one of my kids feels a little warm. This NEVER happens, but I'd call this a sick day. The rest could be a good for all of us, just this once.
The bright and cheerful part of the post is coming though!
Lucky for me, a bellyache last night was the perfect opportunity to start a favorite things list (after a goofy text convo with my sister of course:). I decided to focus on physical delights this time and not spiritual. Making a list worked: before I knew it I was asleep!
"These are a few of my favorite things":
Thrift stores
Thanksgiving dinner
My perfume
Road trips
Cookies
Herbal tea and cute teapots
Crochet projects and yarn
Netflix
Artichokes
My "shmop" mop
Candles
Maxi skirts and dresses
Ankle socks
Autumn
My scarf collection
Bags. I really can't emphasize this enough.
My magic bullet blender
My electric pressure cooker
Our comfy reclining couch
Probiotics
Riding in the back seat of a car (some people call shotgun. I call the hump!)
New friends
Nicknames
Sleeping in a nest of pillows on the couch
My degree and nursing license
Waterfalls
Oxford wingtip shoes
Blazers
Great Lash mascara
Getting full
Funny peoms
Museums
Family field trips
My awesome dog
Putting new outfits together from my closet of thrift store finds
Playing guitar to chill out
Texting besties/sisters
Dark pink/magenta
Anything that smells like cinnamon
Underlining in books
Luggage and packing for a trip
The bright and cheerful part of the post is coming though!
Lucky for me, a bellyache last night was the perfect opportunity to start a favorite things list (after a goofy text convo with my sister of course:). I decided to focus on physical delights this time and not spiritual. Making a list worked: before I knew it I was asleep!
"These are a few of my favorite things":
Thrift stores
Thanksgiving dinner
My perfume
Road trips
Cookies
Herbal tea and cute teapots
Crochet projects and yarn
Netflix
Artichokes
My "shmop" mop
Candles
Maxi skirts and dresses
Ankle socks
Autumn
My scarf collection
Bags. I really can't emphasize this enough.
My magic bullet blender
My electric pressure cooker
Our comfy reclining couch
Probiotics
Riding in the back seat of a car (some people call shotgun. I call the hump!)
New friends
Nicknames
Sleeping in a nest of pillows on the couch
My degree and nursing license
Waterfalls
Oxford wingtip shoes
Blazers
Great Lash mascara
Getting full
Funny peoms
Museums
Family field trips
My awesome dog
Putting new outfits together from my closet of thrift store finds
Playing guitar to chill out
Texting besties/sisters
Dark pink/magenta
Anything that smells like cinnamon
Underlining in books
Luggage and packing for a trip
Sunday, October 5, 2014
Nights
That's the most difficult time for me--the time when I should be in bed but my body revolts instead. Sleep has even been exhausting lately with dreams that make me feel like my brain was working through complicated problems for hours.
But how grateful I am for the truth of this scripture.
"...weeping may endure for a night, but joy cometh in the morning" (Psalms 30:5).
And it truly does. Almost every bellyache I've gone to sleep with has resolved by morning (until I wake my belly back up again;).
This psalm can be expanded as a metaphor for life too. It will all be okay in the end. If it's not ok, it's not the end!
But how grateful I am for the truth of this scripture.
"...weeping may endure for a night, but joy cometh in the morning" (Psalms 30:5).
And it truly does. Almost every bellyache I've gone to sleep with has resolved by morning (until I wake my belly back up again;).
This psalm can be expanded as a metaphor for life too. It will all be okay in the end. If it's not ok, it's not the end!
Friday, October 3, 2014
Healing Hurts
I'm a nurse. Cures are easy to spot. Being cured means symptoms are gone, usually from a quick fix. Being HEALED, on the other hand, comes from an entirely different process.
I have endured years of painful hoping. It was painful because my expectations, my plan, and my will were not quite being realized the way I wanted. Very often, like every few days to every few weeks, I had an internal funeral for another hope: a child I missed meeting, a missed opportunity, a 'no' answer, lack of a 'cure.'
It's contrary to the pattern of my life because up until several years ago when I started getting sick, I've gotten everything I really wanted. I figured everything I planned and hoped for was a righteous desire. I felt that I prayerfully considered, that I asked not amiss, that I received divine endorsement, and that I worked like crazy to git 'er dun. Following this pattern, I felt my ideal world would be realized. I willed my life, while acknowledging hugely, relying heavily upon, and thanking profusely the Heavenly Help I received during every struggle and success.
When my plan for life veered off course, I became very frustrated, but my grit and determination faded little. I made goals and looked forward the next hope, made mantras, and I prayed and acted with all my might to will my modified plan to happen. But I was still often met with disappointment, over and over and over. Worst of all, my health and mood were getting worse, and just everything it seemed.
I cycled through stages of grief with every internal funeral. My future felt hopeless. Despair was dark and nearly constant.
But I never strayed from the path that leads to my eternal goals. That doesn't mean I looked like a tanned, strong, wise backpacker glistening with the sweat of a refreshing hike. No. I have sat down on that path and cried, or had a tantrum, or just lied down in the mud made from my tears to rest until I could press forward again. I have been very childish sometimes (probably because I am but a child to Heavenly Father). Every dastardly performance of struggle on this straight and narrow path has still been on the one and only straight and narrow path. I will never, no never forsake it...even if I look messy and act childish sometimes.
Over time I wisely realized I would not be cured...and over more time, I actually realized I did not WANT to be cured. It was not God's will for me. I had given too much, traveled too far, tried too hard for an easy fix. God and I chose a pack together for me to carry that is expressly mine/Ours, and I want to own it for this whole journey.
Realizing a cure was not the divine intention for me has opened my door to healing.
Read this from a BYU devotional talk:
"...Healing does hurt.
"...Healing requires suffering and yet is a gift from our Savior. How is it that a loving God would allow us to suffer? I have come to realize that my Savior cares more about my growth than He does about my comfort. One evidence of His love is that He does not spare me from the suffering I need for my development and progression...
"...I love how Elder Dallin H. Oaks, a member of the Quorum of the Twelve Apostles, described healing: 'Sometimes a ‘healing’ . . . lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.'
"...Let us remember that, in the end, healing is a gift from our Savior that will likely require effort and suffering on our part so that we can grow and develop through our struggles. The gift is often the refinement we experience in the process" (Jonathan G. Sandberg, "Healing: Courage + Action + Grace," Jan. 21, 2014, speeches.byu.edu).
This talk changed my entire perspective. Instead of holding funerals, it became easier to "drop my burden at His feet and bear a song away" (LDS Hymnbook: "How Gentle God's Commands").
I don't know what being healed looks like for me exactly, but I know that it is the right thing. I have peace in God's plan for me. I give up, and by that, I mean I give up my will and accept His. I believe in this path I press forward on. The song I bear away is a hopeful one as I can more easily rejoice in my sufferings.
I know the hurt we feel and the price we pay are so very, very small compared with "the glory which shall be revealed in us" (Romans 8:18).
In conclusion, Elaine Marshall, former dean of BYU's College of Nursing, said this. "Healing...is often a lifelong process of recovery and growth in spite of, maybe because of, enduring physical, emotional, or spiritual assault. It requires time. We may pray for cure when we really need healing. Whether for cell reconstruction, for nerve and muscle rehabilitation, for emotional recovery, or for spiritual forgiveness, healing needs work and time and energy" ("Learning the Healer's Art," Elaine Marshall, Oct. 8, 2002, speeches.byu.edu).
Guys, this is just earth life, and we are the stuff of heaven. I feel like, because we know that, we can carry on and feel continuous healing through the enabling and healing power of our Savior's Atonement. Our struggles are beautiful, and Ours, and show the best that is within us.
Maybe, after awhile, they even make us glisten.
I have endured years of painful hoping. It was painful because my expectations, my plan, and my will were not quite being realized the way I wanted. Very often, like every few days to every few weeks, I had an internal funeral for another hope: a child I missed meeting, a missed opportunity, a 'no' answer, lack of a 'cure.'
It's contrary to the pattern of my life because up until several years ago when I started getting sick, I've gotten everything I really wanted. I figured everything I planned and hoped for was a righteous desire. I felt that I prayerfully considered, that I asked not amiss, that I received divine endorsement, and that I worked like crazy to git 'er dun. Following this pattern, I felt my ideal world would be realized. I willed my life, while acknowledging hugely, relying heavily upon, and thanking profusely the Heavenly Help I received during every struggle and success.
When my plan for life veered off course, I became very frustrated, but my grit and determination faded little. I made goals and looked forward the next hope, made mantras, and I prayed and acted with all my might to will my modified plan to happen. But I was still often met with disappointment, over and over and over. Worst of all, my health and mood were getting worse, and just everything it seemed.
I cycled through stages of grief with every internal funeral. My future felt hopeless. Despair was dark and nearly constant.
But I never strayed from the path that leads to my eternal goals. That doesn't mean I looked like a tanned, strong, wise backpacker glistening with the sweat of a refreshing hike. No. I have sat down on that path and cried, or had a tantrum, or just lied down in the mud made from my tears to rest until I could press forward again. I have been very childish sometimes (probably because I am but a child to Heavenly Father). Every dastardly performance of struggle on this straight and narrow path has still been on the one and only straight and narrow path. I will never, no never forsake it...even if I look messy and act childish sometimes.
Over time I wisely realized I would not be cured...and over more time, I actually realized I did not WANT to be cured. It was not God's will for me. I had given too much, traveled too far, tried too hard for an easy fix. God and I chose a pack together for me to carry that is expressly mine/Ours, and I want to own it for this whole journey.
Realizing a cure was not the divine intention for me has opened my door to healing.
Read this from a BYU devotional talk:
"...Healing does hurt.
"...Healing requires suffering and yet is a gift from our Savior. How is it that a loving God would allow us to suffer? I have come to realize that my Savior cares more about my growth than He does about my comfort. One evidence of His love is that He does not spare me from the suffering I need for my development and progression...
"...I love how Elder Dallin H. Oaks, a member of the Quorum of the Twelve Apostles, described healing: 'Sometimes a ‘healing’ . . . lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.'
"...Let us remember that, in the end, healing is a gift from our Savior that will likely require effort and suffering on our part so that we can grow and develop through our struggles. The gift is often the refinement we experience in the process" (Jonathan G. Sandberg, "Healing: Courage + Action + Grace," Jan. 21, 2014, speeches.byu.edu).
This talk changed my entire perspective. Instead of holding funerals, it became easier to "drop my burden at His feet and bear a song away" (LDS Hymnbook: "How Gentle God's Commands").
I don't know what being healed looks like for me exactly, but I know that it is the right thing. I have peace in God's plan for me. I give up, and by that, I mean I give up my will and accept His. I believe in this path I press forward on. The song I bear away is a hopeful one as I can more easily rejoice in my sufferings.
I know the hurt we feel and the price we pay are so very, very small compared with "the glory which shall be revealed in us" (Romans 8:18).
In conclusion, Elaine Marshall, former dean of BYU's College of Nursing, said this. "Healing...is often a lifelong process of recovery and growth in spite of, maybe because of, enduring physical, emotional, or spiritual assault. It requires time. We may pray for cure when we really need healing. Whether for cell reconstruction, for nerve and muscle rehabilitation, for emotional recovery, or for spiritual forgiveness, healing needs work and time and energy" ("Learning the Healer's Art," Elaine Marshall, Oct. 8, 2002, speeches.byu.edu).
Guys, this is just earth life, and we are the stuff of heaven. I feel like, because we know that, we can carry on and feel continuous healing through the enabling and healing power of our Savior's Atonement. Our struggles are beautiful, and Ours, and show the best that is within us.
Maybe, after awhile, they even make us glisten.
Wednesday, October 1, 2014
Accurate Representation
If I only posted on days when I felt less horrible than usual (as I have done so far), that wouldn't be a fair representation of what day to day life is like.
And if I didn't acknowledge that my days are usually horrible to some degree, that wouldn't be fair either.
My motto for a long time was "fake it 'til you make it." And boy, did I do a slam bag job. I'd take care of patients while feeling like I was about to collapse and/or implode. This is when I was working full time in addition to being a wife and mother and having a few church responsibilities.
Even after I fiiiiinally realized I could not wish away this illness (still unidentified at the time) to fake wellness, I coifed my hair and put on makeup every day on my new days off. Maybe I could 'look' like wellness.
People do tell me I look well, all the time.
But dang it, you guys. Some days are so awful. I started today in my sauna, sweating out toxins (since my body doesn't detox on its own) while reading the hallmark talk by beloved Apostle Dieter F. Uchtdorf on gratitude. And I felt it, I really did. I feel like I've tried to embody gratitude, take it into my soul. I could copy and past the whole talk to this blog, and it would perfectly blend into the purpose of this entire effort.
But before reading this talk this morning, I failed at a few things and painfully discovered an overuse injury to my right arm from something I tried to accomplish last night. The article helped me try to overlook it all. I fell into trying to fake it again and use that right arm for more work, but I couldn't for today. Then my energy plummeted and I got a bellyache.
Things can turn around in a day, and sometimes the mood plummets when physical symptoms decide to show up. The symptoms aren't me, and the emotions aren't me--they're the Lyme in my body and brain, and the other stuff. It's ok. It's forgivable--I can forgive my body's symptoms and moods and be grateful for moments. But maybe not until they're under control sometimes. Only when I'm very strong can I be grateful in the worst pain.
And I think to have to wait a minute to get it together--that's forgivable too. That's the minute when angels are bearing me up. That's when I feel Heaven is helping this mortal frame to make it. Again.
And if I didn't acknowledge that my days are usually horrible to some degree, that wouldn't be fair either.
My motto for a long time was "fake it 'til you make it." And boy, did I do a slam bag job. I'd take care of patients while feeling like I was about to collapse and/or implode. This is when I was working full time in addition to being a wife and mother and having a few church responsibilities.
Even after I fiiiiinally realized I could not wish away this illness (still unidentified at the time) to fake wellness, I coifed my hair and put on makeup every day on my new days off. Maybe I could 'look' like wellness.
People do tell me I look well, all the time.
But dang it, you guys. Some days are so awful. I started today in my sauna, sweating out toxins (since my body doesn't detox on its own) while reading the hallmark talk by beloved Apostle Dieter F. Uchtdorf on gratitude. And I felt it, I really did. I feel like I've tried to embody gratitude, take it into my soul. I could copy and past the whole talk to this blog, and it would perfectly blend into the purpose of this entire effort.
But before reading this talk this morning, I failed at a few things and painfully discovered an overuse injury to my right arm from something I tried to accomplish last night. The article helped me try to overlook it all. I fell into trying to fake it again and use that right arm for more work, but I couldn't for today. Then my energy plummeted and I got a bellyache.
Things can turn around in a day, and sometimes the mood plummets when physical symptoms decide to show up. The symptoms aren't me, and the emotions aren't me--they're the Lyme in my body and brain, and the other stuff. It's ok. It's forgivable--I can forgive my body's symptoms and moods and be grateful for moments. But maybe not until they're under control sometimes. Only when I'm very strong can I be grateful in the worst pain.
And I think to have to wait a minute to get it together--that's forgivable too. That's the minute when angels are bearing me up. That's when I feel Heaven is helping this mortal frame to make it. Again.
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