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!

Autumn for the Win!

"For the beauty of the earth,
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."

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.

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

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!

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.

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.