This Little Light of Mine

Original image via Flickr Creative Commons courtesy of Herr Olsen

"No one, when he has lit a lamp, puts it in a secret place or under a basket, but on a lampstand, that those who come in may see the light." ~ Luke 11:33

Last week was a big week for me, and I wasn't quiet about it. Almost every day, I posted (to Facebook) some major event, a mile marker on my road to recovery.

On Tuesday, I took a walk in the cold with my little man while Sara was in her dance lesson. Within 25 minutes, I developed a headache and felt I was on the verge of a "crash." I hadn't really planned on a crash or what I would do in the event of one. It was just me and the kids a full half hour from home. But as I warmed up in the car, I said a quick prayer. The headache cleared. I could move my arms again with ease. As a bonus, on that same trip I was exposed to Lysol, and didn't have a major reaction. Believe me when I say this is BIG.

On Wednesday, I pumped gas. I couldn't remember the last time I'd done such a thing. Nor could I remember which side of the car the gas tank was on. Nor how to operate the credit card machine at the pump. But I figured it out. Brandon had admonished me to wear my mask and gloves. I did and had no problems. It made me feel like a grown up again.

On Thursday, this happened...

Nope. Not kidding.

The last movie I had seen in a theater was Les Miserables in December 2012, and I left that feature violently ill. Fast forward to January 7, 2016. We see STAR WARS, and I leave the theater in perfect health! I wore my mask on the way in and out of the theater and during the first half hour or so while people were eating. The theater wasn't crowded, it being the first showing of the day during the middle of the week three weeks after the movie's release. With plenty of space between me and my fellow movie goers, I was able able to enjoy most of the film mask free.

Only a few months ago, I doubted I would ever enjoy another movie in the theater. Which was a shame because before I got sick, movie dates were "our thing."

What I didn't post to Facebook is what happened after the movie...

Original image via Flickr Creative Commons courtesy of Daniella Segura

An Encounter with my Arch Nemesis

 

Several triggers have tried to kill me over the years, but nothing has come as close to success as "The Peanut." 

Back in 2013, I tried to make a healthy peanut butter for the kids. Big mistake. That little experiment sent me to the brink of death. I struggled to breathe, my blood pressure dropped, I couldn't think or communicate, and my body temperature plummeted to 94.1 degrees. I thought I would meet Jesus that day. 

Since then, I've had a couple of freak reactions to peanuts. Once, when I went through a frozen custard drive-thru. Another time when I kissed the kids after they'd eaten frozen custard. (Custard became a cuss word in this house, as you can imagine.)

Peanuts don't mess around. They carry a fine dust which easily disperses in the air and settles on things like napkins, custard cups, and hard surfaces. Trace amounts are enough to trigger the sensitive and allergic, and the reaction can be severe. Bad stuff goes down when peanuts and I are in the same room.

When it became clear that God was healing me, Brandon and I agreed we wouldn't experiment with triggers which have caused shock reactions. Secretly, I asked God to allow an accident to occur with each shock trigger, but only when my body was ready for it. 

God answered my prayer sooner than expected. 

After the movie on Thursday, B went into the hardware store where we buy local honey. At the entrance is a massive drum of peanuts in the shell. The honey shelf is right next to it. As are the paper bags.

Brandon returned to the car and placed our paper bag of honey in the backseat. Five minutes later, my face and tongue began to swell and my thinking went all...swimmy. 

I swore. Because I knew what it was and I thought it was going to be bad and we had just been on our first date in three years and it was going to end in an emergency. Or so I thought.

Brandon pulled over. I took my rescue meds. Brandon treated me. And I was fine. 

Usually, peanut reactions continue to worsen over the course of a half hour, and it takes me a week to recover. Brandon skipped hunting that evening to keep watch over me. I kept smiling at him, assuring him I was okay. I told him about my secret prayer. 

God wouldn't have let that happen before I was ready. He doesn't give good gifts just to yank them out of our hands.

The timing of this little accident was so perfect. It happened before I shared a meal with my prayer group last Friday, which gave me extra confidence even though they were careful to accommodate me. More importantly, it happened before the White As Snow Gala for Project 41, which I will attend on the 22nd.

 (Purchase your tickets here.)

Now we know--even if the worst case scenario happens I'm not going to die. Brandon will be able to relax and enjoy instead of worrying about me the whole time. To an extent. And I'll be brave enough to try the food after all these weeks of asking God to allow me to eat it without issue. 

(I'll let you know how that goes.)

Sharing the Light

 

I realize my constant praise reports may annoy some of my FB friends. I get it. Ecstatically happy people can be irritating. My sick friends may think to themselves, "What about me?" Been there, done that. I know exactly how you feel. 

But after carefully cataloging the descent, it would be seriously neglectful not to document the rise. Don't you think?

My heart is to encourage. For four years, I've been a walking reminder that life can go terribly wrong. That joy can be found in the midst heartache when you lean into Jesus. Now I'd like to be a walking reminder that God hears and answers prayer. I want to be a parable of resurrection. So I continue to display my candle on a lampstand that others may see the light. I pray others will join me with their own healing stories.

Original image via Flickr Creative Commons courtesy of Esteban Chiner

Healing is Contagious

The people who have walked with me through the darkness are the most affected by the light. Maybe more so than me. When you've watched your wife/child/mother/friend fighting for her life against a supposedly incurable, progressive disease, it does something to you when the tragedy is rewritten with hope.

My doctor and friend, Carolyne Yakaboski, often shakes her head in wonder. My parents grin over my latest experiments. Fear loosens its grip on my Superman as he learns to trust and believe. Sara asks me to take her to Sonic so she can play on the playground. 

"Soon," I say. 

But Micah...oh, man. 

Micah is a sensitive kid. He doesn't always show his emotions (as opposed to Sara who wears her heart on her sleeve and wants everyone to participate in whatever she's feeling at the moment). But he feels deeply. Mom reminded me the other day that Micah was adjusting to a baby sister when I got sick. That's a lot of life change for a sensitive little guy. 

Micah has only a couple of memories of me when I was well. He has lots of memories of me in bed. Of being passed around from caretaker to caretaker. Of my absence. He'll be seven next month. I've been sick for over half his life. 

The other day when I told him I would start picking him up from school some days, a gap-toothed smile spread across his face. Tears filled his eyes until one slipped out and ran down the side of his freckled nose. "You made me cry, Mama."

"Does that make you happy?" I clarified. 

He nodded, and I kissed that little nose.

Not long ago, he told my mom with wide, serious eyes, "God has finally heard our prayers."

Lately, he's been praying for other sick people we know with confidence. He believes. And he's been...I don't know. Happier. Almost as happy as when he was a baby.

Mom and I talked as we watched the kids play one day last week. "This is going to stay with him his whole life," she said. "He'll never forget what God did for you. It will shape his relationship with Him forever."

My story probably won't have the same impact on you as it does on my husband and son. But because there's a chance it will shape your view of our good, good Father...

This little light of mine

I'm gonna let it shine

"Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house." (Matthew 5:15)

The Art of Tug of War

 

I am learning the art of tug of war. For two years, I have battled on both sides of the rope. On one side is acceptance of my lot. John Newton once wrote, "Everything is needful that He sends; nothing can be needful that He withholds." For reasons known only to Him, the Lord deems my trial needful. I do not understand, but I trust the heart that bled for me. On the other side of the rope is the full collection of my efforts to be well, which are many and varied. I never stop trying. I don't feel allowed. As much as God wants me to gratefully accept what He has justly and righteously given, He also wants me to want to be well. The only surrender I am permitted is to His plan for my life, not to this illness. It's an exhausting game, but I hold my grip for the grip of Sufficient Grace on me.

After numerous dead ends, setbacks, and advancements on one front as I lost ground on another, I am thrilled to report I am finally, undeniably better.

• My reactions are not as severe as they once were. This time last year, I was going into anaphylactic shock 1-3 times per week caused by an assortment of triggers. As I write this, I cannot recall the last time I "shocked." I still experience chest tightness, a barking cough, mental confusion and an overwhelming drunken sensation during acute episodes, but these symptoms are not life threatening. We know how to deal with them. And thankfully, I am no longer terrifying my family on a regular basis. I continue to react to a frustrating number of things most people would never consider to be unsafe, but the receding strength of my reactions gives me hope that one day I may live a life with fewer walls.

•  I have more energy. I continue to experience fatigue, but it feels more manageable now. I don't think it's easier just because I'm used to it. I don't think anyone ever gets used to feeling like standing is the healthy person's equivalent to a half marathon. I just understand it better and can anticipate it with more accuracy, which makes it livable.

• For the most part, my pain remains manageable. I have good days and not so good days. I can't do everything I want to do, but I can do most of it without pain taking me over.

• During my check up with Dr. Yakaboski this week, my thyroid, adrenal and liver function all showed improvement! Praise the Lord!

Truly, God has done this. He has heard and honored our prayers. His hand has been so evident, His direction perfectly clear. He has given my doctor wisdom concerning my needs. He has sent people into my life to offer me a helping hand. He has given me the strength and resolve to press on each step of the way. Thank you for "helping together in prayer for us, that thanks may be given by many persons on [my] behalf for the gift granted to [me] through many" (2 Corinthians 1:11). Please don't stop praying!

I want you to know where your prayers have led my family and me. So in the spirit of full disclosure, I will share a few key elements which have helped me to heal:

• Let's get this one out of the way: Daily (and sometimes twice daily) coffee enemas. TMI, I know. Whatever. Let's get over it together, shall we? They have been a huge help in reducing my histamine burden and toxic load. My entire body feels instantly better afterward, especially during acute episodes. Coffee enemas are a key aspect of natural cancer treatment per recommendation of The Gerson Institute. You can read an article about it here. My friend Caroline (aka Gutsy) also has an informative post about coffee enemas if you are curious about the method to my madness. 

• Stress management. We all know that stress is bad for us, a fact which is doubly true for people with chronic illness. Stress is an actual trigger for mast cell activation disease patients, and can cause anaphylaxsis all by its lonesome. I have been forced to learn to manage my stress. I realize that not everyone can live how I live. Some people work 9 to 5 jobs or are full-time students, some mothers have 8 children and some people have zero familial or community support. Nevertheless, I think everyone can afford to adopt at least one of the following principles:  

•  Prioritize your life by what must be done today, what should be done today, and what can wait until tomorrow. Guard your "spoons" so you can do the things which matter most. 
•  Have a plan, but hold it loosely. This helps you to balance rising above your disease and giving yourself permission to be sick. Frustration about your illness only adds to your stress load. Believe me. Holding your plans loosely also gives the Holy Spirit an opportunity to shape your day as He sees fit. His plans are always better than yours. Living life at the ready for Him to sweep through and involve you in something eternal is the most adventurous and fun way to live!
• If you are able to get out of the home, limit yourself to one event for the day. No more. If you work or go to school, that is your one outside event for the day.
• If you are running behind on dinner or kids are whining or you feel the pressure of a million things left undone, STOP, BREATHE DEEPLY, AND PRAY. God is eager and able to give you the grace you need to complete the tasks of the day. Running about all frantic and flustered helps no one, least of all you.
• Smile, laugh, sing and dance as often as you can. Especially if you don't feel like it. Force feed yourself with happiness.
• Spend time outdoors. Fresh air and sunshine are good for all the bits that make you you.
• Reserve time every day to do something creative or enjoyable. I learned this one from my Jenny. She was good at knowing what was good for people.
• Take mornings slowly as often as you can. Sleep in whenever possible.
• Limit toxic and difficult relationships. Many people would advise you to nix these relationships altogether, which is great advice in very particular situations. But I often find it is neither practical nor biblical to completely sever all ties with the unlovables in our lives. Many of these relationships cannot be escaped for one reason or another, and Jesus calls us to love the difficult ones because He does. But create boundaries. Boundaries are a form of love. No one should be allowed to have a free go at you whenever they please. It's not good for you or for them.
• Deep breathing and meditation. I recommend specific meditations such as memorized scripture and reflections upon God's character, His blessings, and His history of faithfulness with you. Read and ponder His promises in the Bible. These good, wholesome thoughts nourish and invigorate the soul, which is what stress management is all about.
• Count your blessings. Keep a gratitude journal. Anger and bitterness (stressors) cannot find entry into a thankful heart.

• Daily detox baths. I take a 30-45 minute bath every day using 2 small scoops of magnesium crystals and sometimes add either 2-3 cups of organic apple cider vinegar or 1 cup of bentonite clay.

•  Regular exercise. I have experienced health slumps which have caused brief lapses in the discipline, but if I can at all, I do--usually 4 or 5 days per week. I like a mixture of low impact cardio and yoga. Usually, I use the Wii Fit board as a step, and walk up and down while I watch something on Netflix. Sometimes, I do a few minutes of light rebounding sitting on the side of my bed. I try to do at least a little yoga at the end of every workout. Yoga is my favorite. I like it because it's challenging without being harmful or dangerous for my joints, and it makes me feel oh so good.

• Twice monthly lymphatic drainage treatments at Dr. Yakaboski's office. My frequent reactions cause my lymph nodes to swell painfully. These treatments give me welcome relief from discomfort and healing support for my body. During the treatment, Dr. Yakaboski also performs acupressure work to balance my emotions using a technique called B.E.S.T. A particular application of this technique, which takes the body out of "fight or flight" mode, has proven to be life saving for me during anaphylactic shock. I have purchased the instructional DVDs so my family can learn to perform it in case of fire ant or wasp stings this summer.
  

• Twice monthly chiropractic treatments. I firmly believe chiropractic care is essential for overall health. If the spine is not properly aligned, the body is not operating optimally. My chiropractor specializes in a program called Total Body Modification (TBM). TBM is another form of acupressure work (dealing primarily with the acupressure points on the spine) which can treat specific symptoms as well as support the operation of full body systems. I use the most basic TBM techniques for every acute allergic reaction at home, and have Dr. Frieden do the more complex, fancy-schmansy stuff in her office during my visits. Last October, I told her of my anaphylactic reactions to every little thing. She performed a specific TBM sequence, and since then I have had significantly fewer and less severe episodes of anaphylaxsis.

• Regular at-home BioSet and TBM treatments. These acupressure treatments slow or stop reactions very quickly. It's like pressing a "reset" button on my body. It's difficult to explain what it is or how it works, but I love my sister's take on it. After having a systemic reaction to Chinese food, she asked me to treat her even though she isn't much into my hippie ways. She came over to the house and after the treatment, she commented, "That is some weird crap, but I feel a lot better!"

•  Nutritional therapy as directed by nutritional therapist, Jennifer Nervo of the blog 20 Something Allergies. I discovered her blog in September 2012, and have followed her ever since. Her Baby Steps to Better Health series helped me a ton in the early days of my illness. For 18 months, she has assisted me as I have fumbled and bumbled about in an effort to get food safely into by body. She is now directing that effort. We've only just begun the nutritional protocol, but I have been implementing a few new-to-me concepts for several weeks now to which I have responded quite well. Jennifer understands how food works for the body, how the sensitive body responds to food, four day food rotation cycles for allergies, low histamine diets, and how to target autoimmune and mitochondrial disease with a specific nutritional approach. She knows each patient comes to her with individual needs, and she tailors her knowledge to fit those needs. I plan to post about my experience after I make it through the second rotation cycle early next week.

• Healthful miscellany: 
• Rest and refusal to feel guilty about rest
• Sunshine and fresh air as often as weather and health permit
• Humbly and gratefully accepting help from others
• Avoiding triggers (i.e. staying away from crowds and uncontrolled environments; avoiding foods which make me sick; letting others handle and wash new clothing; having Brandon screen all of my mail for scents and chemicals)
• Wearing a double mask any time I leave my home. It's social suicide, of course. It earns me lots of stares--some curious, some dubious--and very few hellos. Children are afraid of me. But it keeps me alive and mostly well. 

I will not lie to you. None of these things have come easily. It's been a slow, laborious process. Each component was implemented during a different season of my illness, and some of them have required a great deal of courage and trust. The battle for my health is costly in every way something can be costly, but it is not waged out of angst, bitterness or desperation. Mysteriously, the God of Paradoxes has created a paradox within me--I gratefully accept my disease as a good gift given out of God's righteous wisdom while I fight the disease like the assault from the Enemy it is.

It's a tug of war. Gratitude and desire. Contentment and fury. Surrender to the Lord and defiance of the Enemy. The rope must remain taut or I fall. It's exhausting and impossible apart from Christ. But through Him, I can do all things. He is the strength of my resolve, the power behind my work, and the song in my heart.

"Unless the Lord had been my help

my soul would soon have settled in silence.

If I say, 'My foot slips,' 

Your mercy, O Lord, will hold me up.

In the multitude of my anxieties within me,

Your comforts delight my soul."

-Psalm 94:17-19