Food Abuse

Let me ask you something. If you found yourself in an abusive relationship, would you put up with it? I would run away--no one can treat this precious daughter of God like that! (Sadly, I have had to run away before...)

Follow-up question: would you volunteer to go back to your abuser? By show of hands, who wants to put up with an abusive significant other? And also commit to be with them all day every day for the rest of your life?

Anyone?

Wait, NO ONE?

Well, what if your abuser was food?

And you had to eat it three times a day, 365 days a year? And every time you do, it batters you and whispers lies to your mind about how weak and incompetent you are at feeding yourself, dealing with stress, what a burden you are on others, threats to hurt and destroy you...

This is what it's like.

There is no manna in sight. No way to plug yourself in for a charge at night like your phone. Just you...and food. It used to be so kind and enjoyable, but now you hate the fridge; you loathe the pantry. The grocery store is a hopeless spiral. You wish all your food could be made instantly and to order so you didn't have to think about it ever again.

It cramps your guts after every meal, makes canker sores in your belly, and has been narrowed down to such a small variety of what should be considered nutritious, healthy foods that you find yourself just opting out some days instead of eating the same old hash again.

You don't allow yourself to get full because when you do, you get sicker.

When your belly reacts, you blame yourself (abusers make you feel guilty).

The food you eat is eaten because of obligation and function, not pleasure.

Abusers are isolating. And any food traditions you established as a healthy person are completely obsolete. Food-centered holidays depress you. You wonder if you'll ever taste your mom's stuffing again or be full at Thanksgiving dinner. You're not allowed to eat Easter ham because of the curing agents. If you think that you can break the rules just once, you will hear about it and get beat up overnight and for the next two weeks.

You don't eat out because of bad experiences that had horrific ramifications (one time it was a colonoscopy). Contamination or blatant lying about ingredients can make you ill for two weeks. You must live in food purity for fear of being kicked in the guts otherwise. You hate being "that" person with "special needs" and don't want special accommodations or attention drawn to yourself. You don't feel worthy of it.

You don't do potlucks. You bring your own food everywhere you go (if you remember, and if there is something easy to grab like a piece of fruit).

You don't eat at ward dinners because you have learned from experience that people feel uncomfortable eating in front of you and apologize profusely for doing so. You eat at your sister's wedding luncheon or extended family dinners from a pyrex dish that raises eyebrows and questions, and you don't feel like talking about your illnesses with every passer-by. Meanwhile, delicious smells and decadent desserts mock your limitations and your growling belly.

You stare down at your pyrex, with its meat and vegetables. It's so few calories compared to the heap on others' plates. There are no starches to make you full and satisfied. 

You take your digestive enzymes at the end to derive some nourishment from what you just ate....plus supplements. Lots and lots of supplements.

And you wonder why you keep this relationship up at all.

Insensitive people mock your food choices (as if you had a choice) and say it looks weird, or take a look at your no-cheese cheesecake and ask, "Does that even taste like cheesecake?" You blink back tears and admit it doesn't, but it sure is healthy. The food doesn't defend you; it just lets you take the heat.

You wonder if you'll waste away. Your BMI is 16.8; you haven't weighed this little since before you got hips. You feel your brain shrinking. You remember how much you loved your softness and curves at 18 weeks pregnant and wonder if you could ever support another life inside of you again. You go to bed with a growling stomach and can't comfortably feed it again until around 11 AM. 

You trust the blessing on each meal but can't see the results. You'd rather just eat your favorite Paleo cookies, but don't have the endurance to get up and make them, or anything else. This relationship is controlling, domineering, and psychologically damaging. You want to give up and run away, but when you try, you come crawling back for calories after you can't take the hunger anymore.

Worst. Ever.

Contrasting to the abusive food relationship is my adoring, attentive husband who loves me and know my "special needs" better than anyone. He defends my belly with the ferocity of a lion protecting his lioness. While I sheepishly wait for a verdict at a public eating setting, he inquires about ingredients in the chicken or the salad. He does our grocery shopping and food preparation and reads every food label. I trust my husband completely; he has protected and provided safe meals for me a thousand times at least. I couldn't function without him.

I am in the process of fixing this attitude. I know God could have given us manna or a charger to plug in, but He wants us to figure this out and to enjoy it. I have no joy in food, but I want to. I know this hard experience is for my good and that Heavenly Father will lead me in the way I should deal with this. I am starting on a course that I hope will help. I want to chronicle where I started so I can see my progress.

I'll end the post here. I'm praying for help. if you have helped my family food-wise in any way, THANK YOU.

The Virtue of Awkwardness

"This lady...I've seen her on this news show before. She keeps touching her bangs. They get in her eyes. I kind of want to reach through the screen and help her out."

I thought all this, then realized my folly...

...because I feel like I am the EPITOME of awkward hair.

I became a pixie haircut girl when I was a mom and started working full time as a nurse on top of that. The pixie has truly suited and delighted me. It's ridiculously easy yet consistently polished. 

But I have also grown out two pixie haircuts, and all of you who know me in person have gotten to enjoy viewing such fabulous phases as the Bieber, the Bobby Brady, the mullet, the flapper, and Edna Mode (my current style, yay?). 

So who am I to look at the nice news lady and want to correct her bangs? Maybe she's in the process of growing them out like me, or maybe she loves them that way and I should let her love them. "Not my circus, not my monkeys!" (Polish proverb.)

People deserve space to be themselves or to change without judgment. They also deserve to like things that are different than what I like. Look at it on the small scale or big scale, but it's true. 

It applies to others AND ourselves. Did you ever think about that? Like, I'm not cool with being Edna Mode right now or ill 100% of the time, but I allow myself space to be awkward and transitory, and I look for the good. 

Like, hey, my straight hair is full of surprises every day and even has a little body because it's short. And bonus, I work on that bed head ALL night, and it is IMPRESSIVE and FANTASTIC! 

With regards to my healing, this deliberateness means my body isn't taking shortcuts; it's doing a thorough, complete job. (Hm, sounds just like my personality: deliberate, thorough, and perfectionistic.)

Rushing that which is out of my control is probably rude. So rock on, body, rock on. And hair, you do your thang, and keep on surprising me (I expect more bed head masterpieces from you). 

Transitions are healthy, and awkward phases mean progression. I'm on my way to both vitality and mermaid hair, plus amazing, eternal things. 

You're on to something great too, so let's be awkward together. 

Don't Try to Be a Hero: Wheelchair Edition

It was a treatment day, but I put on my big girl dress and hit the town. I enjoyed the Mormon Tabernacle Choir Christmas concert and the lights on Temple Square with my family. It was exceptionally awesome to have our children there. All of us piled into the wheelchair for the ride to the car. :) 

My taller half is also my hotter, buffer half.

*I flex for you*

If you're weak or sick or get sapped of energy by walking across the house (on a treatment day, like me), get a wheelchair for long distances. No, seriously. I got it for outings just like this one. Gotta get out, you know! Embrace it. Let people push you around. Don't try to be a hero. I'm tired of not spending my energy wisely.



"Hot wheels leading the way!"

Space Age

That awkward moment when you send a message all the way to outer space and back to your husband who is working in his office across the house...

...and that message says,

"Judge me and call me lazy, that's ok. But will you please come unlock the front door?"



He'd never judge or call me lazy, ever, ever, ever...

...even though I was closer to the front door than he was.

Our schoolgirl made it inside ok, but it wasn't without a lot of work and satellites and typing and stuff.

---
Hashtag EW, hashtag tEWsdays, hashtag attached to this mattress, hashtag do not remove under penalty of law, hashtag I'm working hard on getting better, hashtag laugh at yourself, hashtag am I doing the hashtag thing right?

Midnight Cheer

Rah rah rah!
Give a cheer!
We're so glad that nausea is here!

IV's done,
Still you stay,
I can't make you go away! So,

Rah rah rah!
We're not done!
Who knew insomnia was so much fun?

Yaaaaaay, this stuff!!!

(Might as well be *cheer*ful about it!)

"How Are You, Really?"

"How are you?"

What do you think of this question? Do you wonder about the sincerity, interest, or motive of the person asking? Do you think about what to share, and to what depth? 

I love to ask this question out of real interest, because I love people and rrrreally want to know them well. 

Elder Joseph B. Wirthlin spoke often of his sweet wife Elisa whose trademark question was, "How are you, really?" I think this says a lot about her, and I hope her question and my "how-are-yous" sound alike. 

People ask how I'm doing frequently. I used to say I was fine, no matter what; but I am as candid as I want to be now. I realized that I matter. 

I generally respond in one of four ways, with each answer getting a little deeper. 

"How are you?"

Number one: "OOOO-kay," I say enthusiastically with a cheesy swing of my fist. No facts. No explanation. Just two exaggerated syllables. I'm obscurely just ooookay. Take it, leave it, ask further, or hear me out. 

In the olden days, the question and answer were exactly the same: "How do you do." A statement, not a question, this was often just a polite greeting. 

I think we have modernized the greeting, "How do you do?" into the greeting, "How are you?" 

I wish it could always be asked as a sincere question like Elisa Wirthlin's. But if it is only a greeting, I have number one as my automatic response. Although, ready or not, I could be getting warmed up for number two, three, or four. 

Number two: (scripted and changed from time to time) "I'm seeing small victories. I'm still on the downswing. Lyme gets worse before it gets better, and I haven't started the upswing yet. But I feel like I'm on the right path, and I feel good about where I am."

I.e. This is dang hard, and I feel like death. But I can't discount the miracles and tender mercies that are happening; they're awesome, and I'm so grateful. I'm holding onto hope with both hands and white knuckles, and man, it's hard. Did I already say that?

This answer is probably used the most. It is also the answer to the common question, "Are you feeling better now?" 

If I feel too yucky or it doesn't feel right to get deep, choice two is my go-to answer. It covers the question and reports on my progress without making me get wrapped up in my feelings. 

Number three: "Actually,...[I think I'll bear my soul to you now]...."

The details, facts, and figures are varied depending on the day or phase of treatment or mood or hunger or whatever. They are regurgitated instinctively based on the person's approach: body language, eyes and eyebrows, a squeeze of my arm, a hug, desperation for their own direction, or duty. The Holy Ghost tells me what to say. 

Words are my medium--the giving and receiving of them. I appreciate deep conversation (classic introvert quality). You wanna know? I'll tell you. And tell me about you too! Let's be besties. 

But if my offering of number three is met with a stare and no words, I feel like I wasn't careful with my pearls--my wounds, sorrows, pain, hopes--and I won't soon be getting to number three with that person again. 

People hopefully, generally, instinctively, VERBALLY reciprocate: empathize, share stories, give well wishes, ask follow-up questions, etc. This give-and-take of deeper conversation is the stuff that makes people caring, relatable, and vulnerable in a beautiful way. Realizing mutual vulnerability can knit humans together. That perspective can instantly inflate our own feeble strength into newfound greatness and solidarity. 

It's important to talk deeply with people and provide insight into your personal life so you can relate to each other and realize how strong God made us to be. We are neat, Heavenly stuff. 

Number four: This level is deep, deep, deep: the deeply personal, the spiritual. It is reserved for times I don't mind people seeing me rejoice with tears or bawl. 

I don't use this much. I write an exorbitant amount outside this blog and talk my husband's ear off. Some things I keep inside an internal storehouse. They are wrapped in delicate tissue paper so I have to consider whether I want to go to the trouble of disrupting the paper covering that dream, hope, hurt, memory, whatever, so I can look at it. Moments of enlightenment are lamps I turn on to see my packages in the right light. Some I unwrap and display as a hope or goal. Some are caustic memories that seep through the paper; sometimes I keep them. Sometimes I'm able to throw them away. But the rare number four's response requires me to go into my internal storehouse and take out packages. 

I hope you'll think about your "How are you?" questions and answers. We are meant mourn with, comfort, and rejoice with each other. We are meant to reflect on that question ourselves too--"How am I?"

Remember, the two great commandments involve three parties: God, others, and self. 

"Master, which is the great commandment in the law?

"Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.

"This is the first and great commandment.

"And the second is like unto it, Thou shalt love thy neighbour as thyself.

"On these two commandments hang all the law and the prophets." (Matthew 22:36-40)

"You Are Doing God's Work...Wonderfully Well."

I had a very mature conversation with my daughter. 

It had been a long day already with a snowy canyon drive, three IV treatments, and eight bee venom injections. By the time I got home, I started feeling terrible. The bee venom depository in my lower back swelled to the size of my hand and raised by about an inch (ouch). 

My sweetheart had picked up my daughter from school. Her sunny outlook brightens our home. I asked about her day, and she chatted with me about all the things she was looking forward to this week. 

She asked if we could have a "sleepout." A "sleepout" is what she calls a family slumber party in the living room with all our mattresses on the floor. She asks for these weekly it seems, and they happen only about once a year. 

I was feeling yucky and like I needed to lie down. I said no to the "sleepout" for now, but that it might be ok another night this week. 

The thought came that I should give my daughter the facts of why I keep having to say no. It suddenly became the right moment to have a factual, woman-to-woman, face-to-face talk with my little girl. I didn't expect it, but it was time. 

We've hinted at this subject a thousand times, but I've never just said it. I mean, I've been sick since before she was born, but she was never developmentally ready to empathize and understand. Now, suddenly, my baby-turned-schoolgirl stood before me, and I knew her sweet little spirit needed the facts. 

I told my daughter I had something important to tell her. "I am a sick mom," I said. (I didn't like saying those words.)

Before the diagnoses came, I came across as just a tired mom. But I told my daughter that I am actually really sick. That's why I go to the doctor and why I have a big IV in my arm. I told her that for awhile I didn't know if I would live or die, but I am getting medicines now to help me be ok. 

Because I'm sick, I can't do a lot of things, like taking the kids places by myself or letting them play outside whenever they want (I can't supervise very often). I said I want to do lots of things, but I can't, and it makes me very sad. 

I said Heavenly Father told me once that it was ok, that my children are meant to be in our family, and I'm meant to be their mom, and that these sweet children would be ok having a sick mom. I confessed that I have cried, feeling sad that I can't do more for my children. 

And then I was done talking. 

I knew how grown-up this conversation might feel to a little girl. I knew how much real life can hurt, and that this is such an impressionable age. 

My daughter heard me out. I didn't think she would say anything. I thought she would feel disappointed and sad. Worst case scenario, I thought maybe she would stomp and say it wasn't fair. 

But she had great understanding and compassion in her eyes. They glistened with impending tears, and the ends of her smiley lips were turned down. 

Then my darling daughter simply said, "You're doing all the things I want you to do." 

Oh, my girl! We melted into a hug. I was instantly comforted. I held my daughter for a long time on my lap as understanding washed over us. I was so grateful for her unexpected, loving, mature response to the facts. She met my confessions with kindness.  

I told my daughter that just because she has a sick mom doesn't mean she needs to be the mom or take care of mom things. I told her to be happy and play and be a kid, but if she saw a way to serve (and I gave small, age-appropriate examples), that she could help. 

I know my children were sent equipped to be in our family, with a sick mom, a busy (but awesome) dad, a tight budget, and other stress at home during this extremely impressionable point in their lives. I know my children are being blessed and protected in many ways. We all are. 

When it starts to feel unfair that my children don't have a vibrant, energetic mom, I remember how great our lives are together and how much we have been blessed. These challenges present other blessings and opportunities to us in ways I didn't expect. 

I am so grateful for the wise, old spirits in my children and that they are ok with our family journey together. We are a good team. I love my family so much. And I'm glad to know for certain that I am good enough.

I am always encouraged by this quote. 

"You are doing God’s work. You are doing it wonderfully well. He is blessing you and He will bless you, even—no, especially—when your days and your nights may be the most challenging. Like the woman who anonymously, meekly, perhaps even with hesitation and some embarrassment, fought her way through the crowd just to touch the hem of the Master’s garment, so Christ will say to the women who worry and wonder and sometimes weep over their responsibility as mothers, 'Daughter, be of good comfort; thy faith hath made thee whole.' And it will make your children whole as well" (Jeffrey R. Holland, "Because She Is a Mother," April 1997). 

Awe, Angels, and Miracles: I Can't Take It In!

11/21/14

Last night was such a downer. I was realizing that Thanksgiving is just around the corner, and I might leave the table hungry again this year. I don't have the energy to cook my own Thanksgiving dinner, bring it in a Pyrex dish to nuke at the event, and have variety enough for the two-day celebration with extended family. I knew I'd have help, but I was overwhelmed at the complication of it all. My belly hurt immensely. I was inexpressibly sad and angry at this food-centered holiday that would soon exacerbate my mental, emotional, and physical pain. 

But God still loved me and set out to prove it. 

(Side note: please be kind to people with food allergies, illness, eating disorders, or other food problems around the holidays. This can be their most painful time of year. Thank you.)

I don't have the words to relay the emotions that I feel today. Many earthly angels visited, bearing needed gifts, one after another, all day long. 

These angels were friends, neighbors, family, people I knew well, people I didn't know--people who intuitively knew that today of all days I would be needing support and love. Heavenly Father knew I needed reminding that He had felt the ache in my chest as I heaved cries and dripped tears last night. He knew my sadness and frustration. 

It started this morning. My husband took me to an appointment, and my friend, the practitioner, refused to let me pay for treatment. I left with a hug and her encouraging words in my heart, assured and so grateful, yet bewildered that I could ever be deserving of such a gift after last night's feelings of anger and ingratitude. 

This was only the beginning. 

My friend and neighbor asked for our crock pot so she could fill it with safe Paleo food, then return it to us hot and delicious tonight. She also asked to watch our children until dinner was ready so that I could rest from my treatments today. My kids played with her kids and had a blast. 

My long time friend from high school texted me to see if I was home. I told her I was, and she said she would be by in just a few minutes with something for me. She arrived carrying a large box of food. Her children were also there, arms full. They marched a Thanksgiving cornucopia into my kitchen. I was speechless and overwhelmed with the spread of food. There were touching notes attached to many of the items, which I quickly gathered and stapled into a thick book to remind me of this gesture and miracle. They left happy, and I collapsed into a barstool taking it in, weeping. 

I cried and cried and cried. I just can't believe the bounty and the love of the caring and the timeliness of this remarkable miracle. There was so much love before me on the counter. 

About an hour later, some senior, full-time, member support missionaries in charge of six thousand people surprised me on my doorstep with a hot meal, a bundt cake, and a bag of apples. Apples are my candy, and the rest of the food was for my family. What a load off my mind to have a meal ready for my family to enjoy. These missionaries sat down and talked with me for a while. They learned about me and understood the exactness that is required with my food preparation. Their grown daughter has a strictly gluten free kitchen due to celiac. Their caring was tangible, their wisdom was timely; I cry just thinking about it. This was their first time visiting, today of all days. They were inspired, I know it. I was so grateful for that outreach and spontaneous exhibition of Christ-like love from people I hardly know.

Our near-empty fridge was full now. I have no sufficient way to articulate what a blessing this is on so many levels. A mental and financial burden was lifted. Our fridge is full of love and sacrifice from people who cared, and I believe, as an extension of God's care through tuned-in people. I can't take it in, the wonder of this goodness to us. Why us? Why today?

This morning I had been so sad that I had no idea what edifying thing I could write today to my missionary sister serving in the Czech Republic. I was feeling sad about the prospect of Thanksgiving, about my terrible belly pains of two weeks, about being angry. But after being bestowed with so many miracles, I knew what to write. It was a testimony that God knows His children and that He is in the details of our lives.

As I wrote her letter, complete with pictures of this bounty, my kind, Paleo-literate friend sent me a text asking if I would like some of a Paleo treat she had just made. I was so happy to accept her offering. It was so yummy too. 

But I just kept thinking...who arranged for all these varied and far-spread earthly angels to look out for me today? How could all of this happen in a matter of hours? Who choreographed this with such personalized precision? How can I ever thank everyone? How can I ever sufficiently thank Heavenly Father for this?

My mom arrived soon after with a green smoothie for me that my dad picked up. It was such a personalized and kind gesture and just another manifestation of how much God is mindful of me on my hardest days. My parents were so busy today, yet they did this. They did this for their little girl. 

To this point in the afternoon, I hadn't rested much because I was busy receiving! It had been beautiful. I had a couple hours when I could rest now, and I did. I had a little nap, content to know that everything was taken care of and that God was watching over me.

While I was still sleeping, my neighbor friend arrived at my doorstep with the crockpot of pot roast and my happy children. I feel such profound amazement and gratitude. The food was perfect, and my taller half was impressed with how much I ate. He didn't even urge me to have just a few more bites because I ate a third of that pot myself.

We ate as much as we could with all our choices. I don't think anything will make it to the freezer with how excited we are about leftovers. And the groceries that were given--we have so much to be thankful for. It just keeps going. 

My low spirits have lasted the week, and other angels have ministered to me with books and flowers, kind words, prayers and love.

I marvel. I don't have words. I just have tears and tears and tears. I have a warm feeling that my needs are known and the hairs of my head are numbered, that I'm more precious than rubies. So is each of us. 

I don't know how today happened. I don't know the details of my pyrex Thanksgiving yet. But I know God hears our prayers. I didn't ask for any of this to happen today, but maybe you did. Prayer works. Prayer is a gift. And when I'm too frustrated or sad or mentally foggy to pray, sometimes in retrospect I realized this has happened: 

"...the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered.

"And he that searcheth the hearts knoweth what is the mind of the Spirit, because he maketh intercession for the saints according to the will of God." (Romans 8:26-27)

Thank Thee Father for answering the prayers I couldn't utter, for anticipating my needs, and for sending a fleet of Thine angels with servants' hearts to bless me all my life...especially today. 

The Nitty Gritty: My Symptoms

I like to read about people who are giving admirable responses to their difficult experiences. But what takes this reading to the next level for me is an account of nitty gritty, day-to-day overcoming of struggles. Admittedly, my blog is too general. It's okay, but I'd like to start zooming in and answering detailed questions I receive. 

I noticed "My Backstory" post is the most-read post I have written so far. I'm surprised because it is sooo long, but also not surprised because people have wondered what my deal is and how I got this way. However, that post does not really list the day-to-day symptoms I feel. 

Talking about my symptoms is not therapeutic or enjoyable to me, but for you, for my memory, and for my posterity, I need to talk about it. I'm going to write about my symptoms as best I can for you in my posts. 

I have had this set of symptoms for many years. I hardly remember what normal feels like. I thought all of these symptoms were just "me," especially the parts in my head. The symptoms have morphed and/or compounded over time.

I read a fantastic, informative article that sums up the main points of my scattered, nonspecific-type symptoms. Here is an excerpt. I'll underline my symptoms (blessedly, some are only rare). 

"Chronic Lyme disease is a chameleon. It can run the gamut from fairly mild to extremely severe. The symptoms can affect virtually every part of the body and include severe headaches, severe arthritis, pains all over the body, vision and hearing problems, dizziness, swollen glands, fevers, heart arrhythmias, heart failure, intestinal and stomach disorders, rashes, and seizures. But as bad as the symptoms are, the worst ones affect the brain and nervous system leading to impaired memory, severe insomnia, mood disorders like depression, anxiety, and bipolar disorder, difficulty concentrating, mental fogginess, inability to follow conversations, and numbness, tingling, 'buzzing' and pains in the arms, legs, hands, and feet. I have seen patients who have almost all of the symptoms at the same time! But as bad as all of this is there is something even worse about chronic Lyme disease.

"Chronic Lyme disease is also an impersonator. And more often than not, it is misdiagnosed. That's because the symptoms can mimic other diseases and because the diagnostic tests for chronic Lyme disease are unreliable. Even in proven cases of chronic Lyme disease, the tests are usually negative. So most people don't even know they have it.

"They are often misdiagnosed as having other diseases and disorders such as multiple sclerosis, autoimmune disease, depression, neurosis, rheumatoid arthritis, ALS, colitis, irritable bowel syndrome, epilepsy, fibromyalgia, dementia, chronic fatigue syndrome, chronic mold toxicity, and ADD (attention deficit disorder). So instead of receiving proper treatment, many chronic Lyme disease sufferers receive prescriptions..."

This was interesting to me:

"...Chronic Lyme is not a disease. It's a collection of various chronic multi-system disorders. Properly speaking, chronic Lyme is a syndrome. The dictionary says that a syndrome is 'a group of signs and symptoms that occur together and characterize a particular abnormality or condition.' Syndromes can have many different factors causing them. They are rarely limited to just one factor. And that is why there is no one successful treatment for chronic Lyme. 

"...Each case must be treated individually according to the systems that are affected." (Dr. Frank Shallenberger's Second Opinion newsletter, "The Reason Most Lyme Sufferers Can't Get Any Help--Until Now," November 2014, Vol. XXIV, No. 11.)

I also have an autoimmune disease that attacks connective tissues. It is probably secondary to Lyme and will probably completely dissipate with the treatment of the Lyme. The only awful symptoms I get from it at this time are canker sores and frozen lower legs and feet. Sometimes I think I'll get frostbite. 

Also, my genetic mutations make me extra special with creating some limited nutrient absorption (I'm malnourished a bit), impaired neurotransmitter production (sorry brain), zero detoxing ability (high metals and toxins in my body), and inability to break down adrenaline (THAT'S a bundle of fun at two in the morning). 

Back to Lyme, I'd have to think, think, think to give you a specific listing of what I have felt exactly. 

My MAIN complaints over the years have usually involved my guts misbehaving--reflux, pain, spasms, altered bowel patterns, nausea, pain that made me wonder if I was dying, burning that wakes me from sleep, weight loss, appendicitis, a paralyzed/inflamed gallbladder, gallbladder attacks, cramps, pain after eating (like canker sores in my small intestine), pain when the stomach is empty, short-lived gastroparesis, low calorie intake, fasting for gut rest, food intolerance, food aversion, sometimes all at once, sometimes a few at a time...ugh, I feel sick just writing about it. 

There are also the MAIN, SILENT complaints of depression, anxiety, agoraphobia, hopelessness, feeling like I'm dying...you know, the cheerful stuff that never wants to come out when an insincere, regular old doctor with his eyes on the chart, head in the last exam room, and stomach in the break room halfheartedly asks, "What's going on today?"

Yeah, no. I'm not talking to you about this. 

Anyway. This is an introduction to how I feel, on a very general level. The symptoms I feel with treatment are a whole other ball of fun that I'll sum up in a list:

Extreme fatigue

Extreme muscle weakness

Zero stamina

Gait disturbances

Dizziness

Low appetite

Gut pain

Nausea

Bad taste in my mouth

Very poor memory

Extreme indecisiveness and inability to focus

Sometimes irritability

Anxiety

Swelling and pain around bee venom sites (yay hot pad)

And I need a soft place to recline because I'm skinny/bony and have loosey-goosey muscle tone.

You know what this is? These are part of herx reactions: when the Lyme spirochetes come out swinging and hopefully die after being attacked by good stuff. This is Lyme to the max for me. This is what I would be down the road if I didn't get treated. 

That's what I mean when I say that with Lyme, you have to get worse before you get better. I see this herxing stuff as a good sign overall. It's induced, and probably temporary as it eases up. 

But I'm not going to think about the future. Expectations don't serve me well. I just know that today is just right, my present is perfect, and the way I feel is exactly as it should be. 

Think Outside the Box for Church Callings

When my diagnosis was still a mystery and I was having major panic and feeling sick at church all the time, it was really hard to do my calling of leading the music in Relief Society (even though I love it!). I thought about quitting, but I stuck it out and found a sub if I couldn't "church" (<--verb) one day. Agoraphobia, guts, nausea, feeling faint, whatever.

Then treatment started, and I was totally dizzy and couldn't imagine staying upright while waving my arm, so I got a sub one week for that.

Then a few weeks passed while General and Regional Conferences happened. I got thinking. I got creative. This is my calling, and by gum, there had to be a way (see 1 Nephi 3:7).

Normally I stood in a space with lots of room and a music stand to hold the hymnbook. Then it occurred to me...

There's a sturdy table at the front of the room. I could ditch the stand, hold the hymnbook with all my buffness (I kid), and lean against the table to keep me knowing which way was up. Brilliant!

I tried it out the next time I led the music. It totally worked. Hot dog!! I win!

I knew that, worst case scenario, I could sit right on the table. Who would care? No one (as long as I sat like a lady, amiright?). I have almost sat the last two weeks, but a little shake of the knees keeps me from feeling like I'm going to faint. So that's cool. It works!

I guess I realized that there are creative ways to do a calling. I have permission and power to think outside the box and be unconventional. And so do you.

I "Look Good" on Sundays!

Sundays are fantastic! Sure we wake up early for church and come home exhausted. But that leaves room for naps and visiting family later in the day, ba-BAM.

My treatment schedule makes it so Sundays are my very best days. My last treatment was three days before, so I'm maybe starting to function on Sundays and behave like a live human, which is cool. People even say I "look good," meaning healthy. (I'd like to give credit to real clothes, mascara, and the eyebrow pencil that make me not look like a ghost.:)

Here's what makes Sundays special for me ( besides the obvious and beautiful Sabbath observance).

I think the clearest on Sundays.
I get to wear my nicest clothes.
I put on a little makeup and dry my hair (a workout, but worth it for the day).
I.e. I LOOK ALIVE! I said that...er, others did.
My soul is fed with spiritual messages.
I get out and talking to others.
I serve in my calling.
I generally eat well.
I can take a nap.
I "jam" at home on my guitar while my taller half plays primary songs on the piano.

Sundays are blessed. I like 'em.

Positive Spin on Sick Days

Today I have been very sick. I kept to my bed in the yoga pants and baseball tee I wore last night while thoughtfully-prepared meals were brought to me. My children were lovingly tended by Grandma and Dad in turns.

All day, I weighed every physical effort carefully to see if I actually had to do it, like getting a drink or changing positions. It's just one of THOSE days. It's been awhile since I have been this physically wiped out.

I stop the self-destructive "why?" game in its tracks because I don't know the answers. I could make guesses about the maxed IV antibiotic dose, or the bee venom, or the diseases and genetic mutations in my body, or my dropping weight, or the food I did or didn't eat, or sleep issues, or great unknowns, or any number of things. But I REALLY don't know. And I kind of don't care.

There's a certain comfort about laying low and just not knowing. There's a peace about accepting myself as I am now. I feel negative feelings when I speculate, blame, try to force change, or pretend I feel well, so I generally choose not to go there.

Sick days can be blessed days. They are slow days and out of control days. They may pass, and the rigors of healthy days may come again. So I enjoy the forced slowness.

I honor my body by being slow and restful and allowing it to be sick.

Sickness is when the microscopic components of our bodies fight to the death for our wellness. They sacrifice everything to make us live.

I am grateful for the cells that fight for me and make me rest while they fight. I'm grateful for medicine and treatments that help them out.

I am grateful for my wonderful body. I can't direct the artillery consciously, cell by cell; but I trust those ranks of living cells that grow, fight, and die for me. They have intelligence to the level they need and are BRILLIANT at their jobs.

I know God is their General, and His Priesthood (given by blessings to me) is their Marching Orders.

Being sick is just another way God shows His love for me. I'm grateful for sick-in-bed days to remind me of this and the wonders of the human body that He created for me. He cares. He has control from the microscopic level to the boundless cosmos, but He cares about my little body. How Great is our Heavenly Father!!!

Bee Stings for the Win!

Once upon a time, I was a little girl who had been stung by bees five separate times.

Each subsequent reaction was worse. The last of those stings was on the front of my ankle, and for a week my foot and ankle were nearly doubled in size.

In the retrospect of later years, I realized that I was allergic to bees. It was confirmed through testing that I was definitely allergic. With worsening reactions, I was advised to carry an epipen during warm weather for possible anaphylaxis.

Do you know how much those things cost? A lot! And how much stress I had around bees? A lot!

Years later still (and just last month), my current doctor recommended bee venom therapy to kick start the immune system and augment the functions of my other current therapies (I think?). I explained my history with bees and that I was allergic.

"Have you ever had throat swelling?" she inquired.

"Well, no."

"If you try this and do have an anaphylactic reaction, we have epinephrine ready. But know that no one I've ever given this to has had anaphylaxis. Pain, swelling, and itching, yes, but no throat swelling."

Aw, what the heck, I thought. "Go ahead." The worst I could do is die, which doesn't really intimidate me anymore, ha!

She injected bee venom under the skin of my lower back. It stung and swelled just like I remember with real bees. But I sat through some IV therapy in the office after that, and guess what! I didn't die!

NEAT.

I had three more injections of bee venom today. (We're working up to ten per session.)

And I didn't die--again!

You guys, this peace of mind is sa-WEET!! I love it! No more epipens. No more surges of alarm when a bee hovers around me (well, actually, give me time to work on that). Bees and I can be friends! We could maybe get a beehive, aaaaaw!

After that first injection, my back was swollen, but I felt at ease. I sat next to my alyssums, marigolds, and herbs as dozens of bees bopped around the countless blossoms. For the first time ever, I was happy those bees were there. Next year, I'll plant even more flowers for those bees to enjoy because I no longer need to avoid them. My lifelong fear of bees is gone!

Beauty in Opposition

I admit that sometimes finding gratitude is an intellectual and not a heartfelt effort.

I'm having such emotional pain about something that even the glad game feels futile. Even when I drum up that list of things to be glad about, I feel little sincerity. I think it's part of mourning sometimes to feel like what you have isn't right or enough.

The good part about days like today is that I have hope for tomorrow, or next year, or the next life. I know the glad game will work again after I've had my cry. I've had enough moments of despair to know that the sun does rise again on a fresh new opportunity to be okay. It warms my back and reminds me that, really, things are very wonderful.

I forgive myself for having a sad day, for bawling through this post, for forgetting the depth and magnitude of my blessings while I weep. Things will get better.

"Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you:

"But rejoice, inasmuch as ye are partakers of Christ’s sufferings; that, when his glory shall be revealed, ye may be glad also with exceeding joy." (1 Peter 4:12-13)

I am grateful for trials. Many of my prayers have been answered through trials--for patience, faith, strength, capacity, ability, empathy, kindness.

I want to remember the pain of this life. It is beautiful because it is the bitter contrast for all the good ahead. Trials and pain are kindnesses to us so we can understand exultant joy when it comes. I hope I don't look back on my life and find that I grumbled all the while and missed the gifts and beauty that God gave me in the form of difficulty and hard times.

I rejoice that moments of searing pain provide the contrast for the endless bliss that is to come.

"The Spirit itself beareth witness with our spirit, that we are the children of God:

"And if children, then heirs; heirs of God, and joint-heirs with Christ; if so be that we suffer with him, that we may be also glorified together.

"For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." (Romans 8:16-18)

"While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude." (Joseph B. Wirthlin, "Come What May and Love It," October 2008).

Everything God gives us is a good thing. I know the heartache I feel is not unique to just me and that we all struggle, but I'm willing to write about it. I hope you know your tears will be returned with rejoicing and gratitude, because they surely will. 

The Gifts of Being a Sick Mom

Before I knew I had Lyme disease, I blamed feeling unwell on so many things relating to the strains of new motherhood and working full time. These were the scapegoats for feeling so sick and not being as active as I wanted to be in my little family and not getting things done around the house.

I gave any energy I had to work, and my family got the leftovers (the totally chewed up, spit out, chronically ill version of me: ew). This was a hideous feeling for me, knowing that all I ever wanted to be was a full-time, stay-at-home mother. But I did what had to be done for the survival of my family, willing to be their figurative martyr...until I realized my actual life was on the line!

The hardest part about realizing I had an actual illness and admitting I am a sick mom was the guilt about not being a better mom and wife. I read articles about how to entertain the kids when you have a sick DAY, like abolishing screen time limits, ordering food in, and hiring people to do stuff for you. Maybe that works for some moms...but what if you have a sick or impaired LIFE?

I started searching for positives of being a sick, impaired mom, truly not knowing yet if this was to be a temporary or permanent state for me in this life. (Actually, I still don't know, but I have the Savior's peace and am not worried!)

Someone told me that Heavenly Father knew what I would pass through, and He EQUIPPED my children to be able to handle being in this family. This is true: they have thrived all the way. I have such comfort knowing this, knowing I'm doing my best, and it is good enough for my children right now. They have all the coping mechanisms and abilities to handle being in our family during its ups and downs. And likewise, I actually have all the abilities I need to mother this family from where I am, right now.

I feel like my children have become more self reliant. They have learned to get their own snacks and make (sloppy, but yummy) sandwiches. They have inherently learned what foods are good and bad for our bodies from the way we eat. They are becoming more obedient about coming inside from playing the first time we call, knowing there are reasons to be inside, even it's just so I can lie down. They realize the cleanliness of their living space relies solely on them because I don't pick up after them much, and they choose whether to live in order or filth. They have earned my trust when I tell them not to answer the door while nap on the couch or shower. They carry their own things in from the car a little better, enjoy outings a little more, and have respect for my abilities when they ask, "Mom, can we play outside for ten minutes?" I can sometimes watch them outside for that length of time. When I say I cannot let them out because I can barely lift my head, they rarely pout anymore and instead play in the unfinished basement with glee. (Get them around their softer Grandparents though, and they'll make a bigger fuss!:)

These are big lessons and big compromises for young children, but I think I've accidentally or intentionally given them self discipline and freedom by being instructive and present, but not always physically active to intervene (as uncomfortable as that can be for me).

As for me, I have been able to enjoy blessings of being a sick mom too. I am being forced to rest...oh, what a gift. (Though, I have a hard time being completely still and usually have a small project in my hands.)

There are other blessings. I like watching my children develop into thinkers and doers. My children get way more time on my lap reading books than they ever could if I was busy getting things done. I have been able to reorganize my priorities. I have let go of some of my pride regarding house cleanliness, my physical appearance, and thinking can do everything. It's liberating and a beautiful gift. It's perfect for right now.

There really are blessings in everything God gives us. I am grateful Heavenly Father could turn my needless guilt into His comforting assurance. I know now that all is well and exactly as it should be.

It takes adjusting your perspective, but His grace turns every stumbling block into a stepping stone.

I'll Always Be Here

There are currently three or four posts on the docket for posting, but they need revision and honing before being published.

IV treatments make my Lyme brain flare up and cause forgetfulness, fogginess, indecisiveness, difficulty focusing, etc., more than usual. It takes two to three days to feel more normal in my brain after a treatment. Thus I have one to two clear-brain days per week, and that is usually when I can focus enough to write. I love writing, butI like it even better when it makes sense. :)

Yesterday was a good brain day, but I used it to write fifteen pages of notes for a class I am teaching later this week.

I just wanted you to know that I am not a neglectful blogger. I think of this blog every day. This blog is a history and will not drop off the earth.

I had a treatment today, but if I get a good moment of clarity, I'll revise and publish one of those posts for you! :) They require more TLC before being viewed.

As an update though, things are going as expected. I feel ew, but it's just a sign that I'm on the road to feeling better. I am enjoying it and feel so grateful to be doing something to help me get better.

My PICC line has been so helpful, and I really appreciate having easy venous access. Later this week I get to hang my own IV from home as the office is closed. The only issue I've had is that the area around the PICC line has been itching since my last dressing change. I don't think my skin likes this kind of dressing. I'm going in today for a different dressing, and I bet I'll be right as rain after that.

That's the scoop for today. I have received so many kind comments and encouraging words from you. Thank you so much. It's an honor to be open with you and maybe exhibit some vulnerability. Isn't that what connects us together as humans, to be (appropriately) open and vulnerable with each other? Thank you for being that way with me too.

Hard Times are a Good Sign

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!

Couch Model

This picture induced comments on social media about becoming a couch model. (This was taken pre Sunday afternoon nap.:) Is there a market for such a thing? Can I be making money while vegging like this? Should I consider a career change? I might be very good at looking sleepy and cozy on couches! I do SO enjoy finding new talents.

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.:)

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!!!!!