Tuesday, July 1, 2014

Mixed Bag--An Update

I've been home from my mountain-top experience at Mayo for a little over a month. Things have not gone exactly as I had hoped. The last few weeks have been hard and good, beautiful and heartrending.
  • I turned 30.
I had always imagined turning thirty would be a difficult thing. To my surprise, it was no big deal. It was pleasant even. I had both a good birthday and a lovely birthday party. On June 3, I posted this story to Facebook:

When I opened my eyes this morning, I asked the Lord to be present in every moment of the day. That would be gift enough. I did not expect a literal gift from Him--

I went outside to hang Sara's diapers to dry in the sun. Brandon's trailer seemed like a good spot. Out flew an angry wasp feeling threatened by my close proximity to his home hidden below the wheel. My peripheral vision caught him coming in for the sting, but suddenly he deflected away from me, as if he had bounced off a surface I couldn't see. I think it was my "blue shield" I dreamed about almost 3 years ago. "Happy birthday to me, from God," I thought.

I shared the story with Mom who reminded me of Psalm 91. I have
lived the truth of these verses for years, but it was the promise God makes to the psalmist at the end which brought me to tears--

“Because he has set his love upon Me, therefore I will deliver him;
I will set him on high, because he has known My name.
He shall call upon Me, and I will answer him;
I will be with him in trouble;
I will deliver him and honor him.
With long life I will satisfy him,
And show him My salvation.”

And almost a whisper in my ear, "Happy birthday to you, from Me."


See? Good.

A week later, I hosted an (herbal) tea party in my own honor. You get to do that when you turn thirty, are too sick to go out, and are kind of eccentric.



 Kids' table

 The menu included three herbal teas-- Rhubarb and Strawberry Hibiscus Iced Tea,
Peppermint and Raspberry Leaf, and Nettle and Rosehip--
gluten free zucchini cake, and Melissa-friendly Paleo treats.

 Most of the guests.

 Morgan and I reunited after our respective adventures, which the Lord saw us through. It was a kind of celebration of His generosity to us. Please continue to pray for Morgan. 
She is still suffering from surgery complications.

 My beautiful Mom.

 The smallest guests. Love them!

  • I have settled back into my routine.
The Mayo experience was more of a spiritual retreat than a medical trip for my mom and me. It was glorious to be home, but it took a few days and lots of grace to find my legs again.
  •  I have finally begun the first draft of my novel.
Until a couple of weeks ago, it had been a long time since I had accomplished any serious work with my novel. I lost my drive in the midst of health struggles, grief, and preparations for Mayo. I also lost interest in writing back story. I was yearning to write the real story, and that is just what I have been doing. I am writing it longhand, which I find to be extremely satisfying. Something about it summons the muse, and it definitely reduces distractions. When I am writing longhand, that is all I'm doing. No peeks at Facebook or Pinterest. Just writing. And it feels like a real craft.
  • I began my prescribed medications. Kind of. 
Upon returning home, Brandon and I discovered pretty quickly that I could not take the Zantac, Zyrtec, and Singulair in their marketed forms. They contain too many fillers. That's right. I'm allergic to antihistamines. But honestly, this is not uncommon for people with MCAD. Brandon checked into using a compounding pharmacy to obtain pure forms of the drugs, but this route proved to be cost prohibitive. In the end, we asked Dr. Carolyne Yakaboski to create a homeopathic form of the drugs. These are not as potent as the actual drugs, but I have found that a little goes a long way with just about anything. I do notice some relief when I remember all of my doses, which is good.

I began Gastrocrom two weeks ago. This drug only contains cromolyn sodium and water. I have had no adverse reactions thus far. Praise God! If it works for me, my GI pain and swelling will begin to resolve in about a week or so.

  • I am failing my dietary protocol. Which I still need to blog about.
I cannot stay out of the tomatoes. I try. I really try. Yet I fail. They make me sick. They make me hurt. They cause me misery. And still I am lured in by their beauty and promise of palatable rapture. Le sigh.

  • I'm getting "grounded." Explanation here.
An earthing kit has been on my wish list for quite some time. Brandon bought me one for my birthday. We began using the sheet right after I returned home, and it immediately improved my quality of sleep.
  • I have added castor oil packs to my health routine. Explanation here
These. are. awesome. I began about two weeks ago. They bring on the sleepies, and reduce the ill effects of my tomato lust. I feel a certain amount of histamine relief after doing them, which calms the flushing and "tired and wired" feeling enough to induce sleep. I put it on every night for about an hour and a half--just long enough for Brandon and I to watch two episodes of BBC Robin Hood on Netflix. Then I go to sleep. Like it's no big deal. Like falling asleep wasn't the hardest thing ever just a couple of months ago. Praise God for earthing sheets and castor oil and heating pads! Praise God for sleep!
  •  I've been using my unique skill set to serve my sister.
Since becoming pregnant, my sister has experienced serious health problems similar to my own. We think the shift in hormones has upset her system, and she has been having allergic reactions to foods, animals, and bug bites. I have been able to direct her to safe, nutritious foods, treat her reactions with TBM and BioSet, and offer her gentle, pregnancy-safe home remedies like poultices, herbs, and essential oils. I am loathed to see my sister suffer, but thankful I can help.

  • Grief continues to rock my boat.
In many ways, I feel Jenny's loss more profoundly today than I did when it was fresh. There is so much I want to tell her. I want to hear her laugh. I want her unique perspective and the artful way she crafts her sentences. I want the light in her blue eyes and her hearty "hallelujahs" in response to every good God has sent. A memory sparked by a conversation or activity will initiate a tiny, seismic shift, sending an unexpected tidal wave to my shore. In these moments, I am thankful for the "hope we have as an anchor of the soul" (Hebrews 6:19). Without it, I would be reduced to rubble every time.

  • There have been two episodes of anaphylaxsis, one of which resulted in shock.
Until about three weeks ago, I had not had an anaphylactic reaction in a record length of time. Since then, there have been two episodes. The first occurred following my tea party, after which I felt uncommonly unwell. I thought my body was rebuking me for the almond flour treats I had eaten. But I really hadn't eaten that much, so I was confused. The next night, my mother-in-law and I shared a warmed cup of left over peppermint and raspberry leaf tea.

BAM! I was struggling for air. I knew it wasn't the raspberry leaf, which exposed the peppermint as the culprit. I had drunk so. much. of this particular blend the day before it is no wonder I was so ill after the party. Bummer. It was a good blend.

And then there was the freak peanut exposure this past Sunday night. Brandon and the kids wanted an Eskimoe's treat after completing a little errand in town. We went through the drive-thru. The window was on Brandon's side of the car. I detected a shift in my body during the transaction, but I had to do the whole self denial routine.

"You're not sick," I told myself. "That would be crazy. You are fine. You are fine. The swelling will subside. You are fine." I continued like this for the 15 minute ride home. I eventually believed myself, so I didn't understand when my blood pressure went on the fritz upon getting out of the car.

When things got bad, Brandon was outside talking to my parents. I was inside with the kids. I was able to take my rescue homeopathics and get a text to him before I was useless. By the time he began performing our tried and true rescue treatment, I was exiting reality--a cold place where it was painful and difficult to breathe, think, move, and obey--and entering the floaty space where it's warm and pleasant and everything is peaceful.

Shock is a siren song. Unless someone tethers you to the ship, you will bail. You cannot help yourself. B wasn't having it though. He says he yelled at me. I was vaguely aware of it, but it came to my consciousness rather muffled, as if I was hearing him from underwater. He demanded I come back, so I did. I am thankful the Lord spared me once again. I must have more to do! Praise God!
Brandon and I have agreed--
In some ways, I am better than I was last summer.
In some ways, I am sicker than I was last summer.

Last summer was nothing short of miraculous. I was knocking on death's door, and then God just turned it around. I went from eating nothing to eating baby food to eating anything I wanted. Eggs? Every day. Tomatoes? No problem. Watermelon? For the first time in years. I could eat any food, any time as long as it came from our garden.

And the garden itself was a miracle. Dad and Brandon were first time gardeners. They only kinda sorta knew what they were doing. Everything planted thrived. Rain came at just the right times. June and July were just mild enough. The bugs were a minor nuisance, and were well-controlled without the use of any substance, organic or otherwise.

This year? Squash bugs destroyed our crop. Tomato worms are having a hey day. We even have bugs in our kale, which is weird. Dad is using an organic, essential oil-based spray to repel them, but it doesn't seem to be working. And with the exception of kale and the now gone broccoli, cauliflower, zucchini, and yellow squash, I am not tolerating anything very well.

I do not understand why the foods God used to bring me back to life last summer are now my enemies. I do not understand the complexities of why one crop is blessed and another is not blessed in the same way. I am not wise enough to guess the purpose of all this waiting, circling, cycling, and disappointment.

Why have I not been healed? I am doing everything right. With the exception of my tomato addiction, I eat perfectly. Well, except when I eat a bit of dark chocolate or have an almond flour treat for my birthday, but still! I detox, rest, sleep, exercise, get sunshine, manage my stress, and avoid triggers. I seek the Lord with all my heart. I pray, meditate, memorize scripture, and make my mind to dwell on things above. I want to be healed. I expect to be healed.

I am doing everything right, and I am still not well. Not even close.

Dear friend, this is life. We can do all the right things, and still not achieve the desired outcome. That is why we must desire a Person more than a circumstance. Someone who cannot change. An anchor for the soul.

Because here's the truth--
You can parent perfectly and your adult child may self-destruct.
You can make good health choices and your body may malfunction.
You can study hard and fail the class.
You can work hard and not land the job.
You can pray hard and not receive the desired answer.
You can do aaaaaaaall the things and miss the Whole Thing.

Now this doesn't mean we throw up our hands and refuse to invest. All things of worth require faithfulness. Laziness is not allowed. We have many seeds to sow. Marriage, motherhood, friendships, nourishment, health, career, craft, and our walks with the Lord all demand that we show up, game on, every day.

This week, Micah and I sat on the back porch and watched an afternoon storm roll in while Sara napped late.

"God brings the rain and makes it stop and makes the garden grow," he observed sagely as we listened to heavy drops pound the tin roof like a drum.

"That's right," I affirmed. "He brings rain and sunshine and gives growth to the seeds we plant. He makes all gardens grow, even the ones hidden inside of us." I touched the center of his chest.

"What kind of garden is inside of me?" he asked, eyes wide. "Will I grow vegetables?"

"No," I laughed. "You will grow fruit. Mommy plants the seed of the gospel of Jesus and the cross in your heart. Then God sends rain and sunshine and gives increase just like our garden out there." I pointed. "And after time, you will bear fruit--love, joy, peace, goodness, and faithfulness to name a few."

But it does not always work this way.

We are not as in control as we would like to think we are. We do not command life or death or cancer or disintegrating mast cells or squash bugs or people or rogue peanut particles. This is okay. Because the One who is in control is eternally, irreversibly good. He has our good at heart. He even takes the evil things of this world, and alchemizes them into good. It's a mystery, but it's true. 

We must stop serving the god we want, and start loving the God Who Is. We must surrender our idea of  good to His definition of good--the Church "conformed to the image of His [suffering] Son" (Romans 8:29).

For me, this means I show up. I do all the things God has tasked me with. I invest my heart, knowing that--yes--it may be broken. It is broken.

A friend told me this week she is hesitant to try gardening while she is already so busy and tired with little ones because she is afraid she would put in a ton of work only for the crop to fail. Oh, goodness--how her trepidation hits close to home. The threat is very real.

Disappointment is a bitter fruit. It's the risk we all take any time we do or love or work for anything. Christian or not, no one is exempt from the risk, but if you are a Christian, you can take comfort in knowing Christ drinks the wine of disappointment right along with you. If you are a Christian, you can rest your head on the pillow of promise--God is weaving your disappointment into an epic tapestry which will at its finish be a glorious work of art. You will one day gaze upon it in wonder, and you will agree--your suffering was not worthy to be compared to the joy you now know.

Life is a mixed bag of happinesses and disappointments, successes and failures, patterns and adjustments. It's devastating and magnificent and ridiculous and wonderful. I could never survive it without Jesus. And having tasted the exquisite joy of His presence especially in the midst of sorrow, I can tell you--I don't want to.

He is our Living Hope. He is our assurance that one day the disappointments will be no more, that all sad things will come untrue. Praise God this mixed bag is not all there is!

4 comments:

Michael, Melissa & Clayton said...

Dear Melissa, my name is Melissa. A lady at my dentist's office told me of your blog since I am also in the midst of a healing journey. I started reading and noticed you too have brown curly hair, you too have two small children and your boy is older with red hair as mine and your daughter is younger as mine and her name also begins with S. I was sure the Lord showed me your blog when I saw that you too were a friend of Jesus. I couldn't believe all these coincidences. Then I noticed information about your doctor and couldn't believe you lived so near, so I made an appointment with Dr. Yakaboski; just last week she saw me. She is such a blessing. I told her I found her information from your blog. She had such joy talking about how far along you have come. I kept reading your blog, noticing that you write the way I feel. You know that "man does not live by bread alone, but by every word that comes from the mouth of the Lord,” that His words are “sweeter than honey to my mouth,” and what it is like when Jesus says “my food is to do the will of Him who sent me and to accomplish His work.” Then I noticed you mentioned being on facebook so I looked you up and then I saw that your birthday is June 3rd, and that is also my birthdate. June 3, 1982. You Melissa, are loved by the Lord and have blessed my life so much in just the past couple of weeks. I have asked the Lord to show me how to live with this illness for His glory, and show me a doctor, and show me how a Believer believes through suffering because I’m so weak. You have been used by the Lord to answer my prayers, and I am so thankful. You became the gift. I have thanked the Lord for you and prayed for you daily. Everyday eucharisteo, thanks to the Lord for He loves His children. Your Sister In Christ, Melissa Rogers (rogersmelissas4@gmail.com)

MelissaKeaster said...

I am constantly amazed by God's coolness! How AWESOME are these "coincidences?" Blown away! I am so incredibly thankful God has used this blog to encourage you and guide you to the help you need. God bless you, sister! I'm going to look you up on Facebook!

Sheyda Mehrara said...

Hi Melissa!
I started crying when I read your blog posts. Although, I do not believe I have exactly what you do. I'm in the process of trying to figure out my SNP's and how they relate to my current poor health. I saw that you went to Mayo Clinic instead of sticking with Dr. Jess. Is there a reason? I'm nervous to reach out to her, and it would be truly a leap of faith. I would love to hear your experience with that. Did it help? I'm emotionally and mentally drained. I'm only 22 and constantly asking God why.

Best,
Sheyda (szm0027@gmail.com)

MelissaKeaster said...

Dear Sheyda,

I am sorry to read of your suffering, especially in one so young! Dr. Jess was helpful to me in a few ways. He was able to tell me I had been poisoned by Cipro, and warned me against ever using it again. He gave me some ideas to try. Though most of these ideas did not work for me, they helped me to see what my problem wasn't. The process of elimination is equally as important to discovery as finding the thing that works! He was very kind, caring, and generous, and I absolutely recommend him, especially if your SNPs are concerning. He is very knowledgeable about epigenetics. But Dr. Jess can't be knowledgeable about everything. He doesn't know mast cell activation disease, even though there is an obvious correlation between methylation difficulties and MCAD. Whether you find help from him or not, I bet trying his protocol will help lead you to the source of your health problems. Once again, I am so sorry for your suffering. May you find Jesus to be your all in all for He has supplied true, deep joy, peace and hope throughout my entire ordeal. I cannot help but want that for others! God bless you!