Nine years ago, I was beautiful, vibrant, healthy, relatively allergy-free, and making peace with every foreseeable outcome of my upcoming marriage. I wore the ring of a man whose body was at war with him. Brandon was pale, thin and soon to undergo a bowel resection. I understood that marrying a man with Crohn's disease may bring about a future full of all night vigils by hospital beds and years of nursing at home. I determined to earn my degree before we had children to serve as a fallback in case he ever became too sick to work. It even occurred to me that I could be widowed in the prime of life, and would somehow have to raise and provide for a family alone. To these possible futures, I agreed.
Over a year into this debilitating illness, the shock has not worn off. I had planned to be Wonder Woman, yet I find myself less capable than Lois Lane. While I manage to cook a meal most nights and tend to my children's basic needs in the morning, I am largely dependent on the help of others. I spend a significant portion of the day in bed although I would much rather be with my kids and busy about my home. In my wildest daydreams, I did not imagine this life.
I did not imagine the dulling of my mind either. My mind used to work like this:
I had an amazing memory. Several things could be rolling around in my brain at once. Connections were contsantly being made. One by one, those 2,000 something tabs have closed down until I am doing well to remain on a single train of thought for any length of time. Sometimes, my brain goes into "sleep mode," an odd phenomenon. I can be lost in thought one moment and lost in oblivion the next. This problem has made everything from prayer to getting dressed challenging. Writing is miraculous. Brain farting is humbling.
When I consider how my situation continues to deteriorate, I am tempted to feel a little frightened. I am afraid to lose any more of my mind. My mind has always been a comforting retreat for me, full of stories, big thoughts and possibilities. I don't want to lose any more weight or hair or strength. I am afraid of becoming an invalid.
On my hardest days, I am tempted to fear the future. The prognosis for flouroquinolone toxicity is dismal. Patients who have an instant reaction to the drug are usually ill 6-7 years. Patients, like me, who slowly decline over a period of weeks and/or months are said to never recover.
I grieve the enormous difficulty that has befallen my family and myself. I daily wrestle to make peace with my reality as I did with the various futures I envisioned nine years ago. I present my health to the Lord, an offering to Him to bring Him glory. I fight the fear and lean hard into Jesus, trusting Him implicitly knowing full well He allowed this catastrophe--for good, always for good. And yet....
I CANNOT AND DO NOT ACCEPT MY PROGNOSIS.
I absolutely need a miracle, and I absolutely believe I am going to get one. One day on this side of eternity, I believe I will be well. On that day, I will have many people to thank--doctors, family members, friends who have labored in prayer, commiserated with us, and shown us generosity--but it will be God who does the healing because He is the only One who can. All of you precious people who invest yourselves in our family by reading, praying, encouraging and serving will get to witness a miracle. I am not supposed to get better, but I will. By stating this, I'm not trying to inspire others with positive thinking propaganda. Positive thinking has its place, but I honestly couldn't care less about giving people the warm fuzzies. The weight of this trial is far too heavy to be limited to doling out warm fuzzies. But if witnessing a true blue miracle strengthens your faith and causes you to more earnestly seek the Lord Jesus, well then--hallelujah!
In the meantime, I continue to seek treatment as the Lord directs. Neither my doctors nor my most devoted prayer warriors were comfortable with the experimental NAD IV treatments. Dr. Yakaboski (my local natural doctor) along with Dr. Kuplesky (Dr. Yakaboski's M.D. partner), Dr. Armine (MTHFR specialist), Dr. Mestayer (the psychiatrist who performs the NAD treatments) and a compounding pharmacist in South Louisiana are working to get it in an encapsulated form for me to take under Dr. Yakaboski's strict supervision. It could be ready as early as the beginning of next week. The idea is to start small and observe my response. My future with the treatment completely depends upon how I respond to the capsules. Dr. Yakaboski has also been busy conferring with two other doctors and the author of the blog Surviving Cipro in order to open up treatment options for me. One of the doctors is a specialist who will help me with my IgE, IgG and leaky gut issues. The other is a doctor who specializes in homeopathics. This doctor believes her sulfur homeopathic will help my body open up my transulfuration pathways (methylation). I have successfully used homeopathics in the past, and feel hopeful that this one will help me.
However, I have to approach homeopathics with a little caution now. I had an anaphylactic reaction to preservative alcohol last week. Preservative alcohol (usually derived from grains) is found in many things (including homeopathics) given to sensitive patients. Grain alcohol also preserves my Acute Rescue drops (my preferred rescue remedy for anaphylactic reactions) and the B12 (dibencozide) drops I need to treat my methylation issues. Dr. Yakaboski made a special house call on Saturday to clear my alcohol allergy. The clearing held, but I will continue to avoid preservative alcohols when possible so I can use the Acute Rescue drops when needed. Cleared allergies occasionally resurface after awhile. To be safe, I evaporate the alcohol out of the B12 every night before taking it. I plan to do the same with the sulfur homeopathic.
I have explored and muscle tested the safety of several possible "quick healing" treatments said to help floxy patients. I am not currently a candidate for any of them because of my extreme sensitivities. I don't really know what we are going to do or how long recovery will take. I don't know if it will be a treatment, a combination of treatments, time, an instantaneous touch from the Lord or all of the above that will cure me. So for now, we pray. We listen. We wait. And I protect my psyche.
I avoid negative information concerning floxy patients. It isn't helpful, and I don't think it applies. I avoid the news, and rely on my Facebook friends to let me know when something major happens. I avoid Facebook when it stresses me out although it makes up almost all of my social interaction outside of the immediate family members who help me. I distract myself, and work hard to "find my happy." I began a gratitude list in late March, which now has 122 items. I copy them in my journal, thanking God for each gift from His hand. The photos below represent a few.
Over a year into this debilitating illness, the shock has not worn off. I had planned to be Wonder Woman, yet I find myself less capable than Lois Lane. While I manage to cook a meal most nights and tend to my children's basic needs in the morning, I am largely dependent on the help of others. I spend a significant portion of the day in bed although I would much rather be with my kids and busy about my home. In my wildest daydreams, I did not imagine this life.
I did not imagine the dulling of my mind either. My mind used to work like this:
When I consider how my situation continues to deteriorate, I am tempted to feel a little frightened. I am afraid to lose any more of my mind. My mind has always been a comforting retreat for me, full of stories, big thoughts and possibilities. I don't want to lose any more weight or hair or strength. I am afraid of becoming an invalid.
On my hardest days, I am tempted to fear the future. The prognosis for flouroquinolone toxicity is dismal. Patients who have an instant reaction to the drug are usually ill 6-7 years. Patients, like me, who slowly decline over a period of weeks and/or months are said to never recover.
I grieve the enormous difficulty that has befallen my family and myself. I daily wrestle to make peace with my reality as I did with the various futures I envisioned nine years ago. I present my health to the Lord, an offering to Him to bring Him glory. I fight the fear and lean hard into Jesus, trusting Him implicitly knowing full well He allowed this catastrophe--for good, always for good. And yet....
I CANNOT AND DO NOT ACCEPT MY PROGNOSIS.
I absolutely need a miracle, and I absolutely believe I am going to get one. One day on this side of eternity, I believe I will be well. On that day, I will have many people to thank--doctors, family members, friends who have labored in prayer, commiserated with us, and shown us generosity--but it will be God who does the healing because He is the only One who can. All of you precious people who invest yourselves in our family by reading, praying, encouraging and serving will get to witness a miracle. I am not supposed to get better, but I will. By stating this, I'm not trying to inspire others with positive thinking propaganda. Positive thinking has its place, but I honestly couldn't care less about giving people the warm fuzzies. The weight of this trial is far too heavy to be limited to doling out warm fuzzies. But if witnessing a true blue miracle strengthens your faith and causes you to more earnestly seek the Lord Jesus, well then--hallelujah!
In the meantime, I continue to seek treatment as the Lord directs. Neither my doctors nor my most devoted prayer warriors were comfortable with the experimental NAD IV treatments. Dr. Yakaboski (my local natural doctor) along with Dr. Kuplesky (Dr. Yakaboski's M.D. partner), Dr. Armine (MTHFR specialist), Dr. Mestayer (the psychiatrist who performs the NAD treatments) and a compounding pharmacist in South Louisiana are working to get it in an encapsulated form for me to take under Dr. Yakaboski's strict supervision. It could be ready as early as the beginning of next week. The idea is to start small and observe my response. My future with the treatment completely depends upon how I respond to the capsules. Dr. Yakaboski has also been busy conferring with two other doctors and the author of the blog Surviving Cipro in order to open up treatment options for me. One of the doctors is a specialist who will help me with my IgE, IgG and leaky gut issues. The other is a doctor who specializes in homeopathics. This doctor believes her sulfur homeopathic will help my body open up my transulfuration pathways (methylation). I have successfully used homeopathics in the past, and feel hopeful that this one will help me.
However, I have to approach homeopathics with a little caution now. I had an anaphylactic reaction to preservative alcohol last week. Preservative alcohol (usually derived from grains) is found in many things (including homeopathics) given to sensitive patients. Grain alcohol also preserves my Acute Rescue drops (my preferred rescue remedy for anaphylactic reactions) and the B12 (dibencozide) drops I need to treat my methylation issues. Dr. Yakaboski made a special house call on Saturday to clear my alcohol allergy. The clearing held, but I will continue to avoid preservative alcohols when possible so I can use the Acute Rescue drops when needed. Cleared allergies occasionally resurface after awhile. To be safe, I evaporate the alcohol out of the B12 every night before taking it. I plan to do the same with the sulfur homeopathic.
I have explored and muscle tested the safety of several possible "quick healing" treatments said to help floxy patients. I am not currently a candidate for any of them because of my extreme sensitivities. I don't really know what we are going to do or how long recovery will take. I don't know if it will be a treatment, a combination of treatments, time, an instantaneous touch from the Lord or all of the above that will cure me. So for now, we pray. We listen. We wait. And I protect my psyche.
I avoid negative information concerning floxy patients. It isn't helpful, and I don't think it applies. I avoid the news, and rely on my Facebook friends to let me know when something major happens. I avoid Facebook when it stresses me out although it makes up almost all of my social interaction outside of the immediate family members who help me. I distract myself, and work hard to "find my happy." I began a gratitude list in late March, which now has 122 items. I copy them in my journal, thanking God for each gift from His hand. The photos below represent a few.
Micah is cooking a squash he helped plant, watched grow, and harvested. I did the knife work, but he seasoned and stirred until it was perfectly golden brown. We had so much fun!
He was proud of himself. He even ate the squash--no coaxing required!
One morning's haul...
A dance party with baby girl. She likes to shake that booty!
Clothing....it's overrated.
Is there anything cuter than a naked baby in the garden?
I'm thankful for those thighs, too. Scrumptious!
I joined Eric Whitacre's Virtual Choir 4.0. I'm still learning my part. I hope to record my video soon. The piece will be premiered for the Queen at Buckinham Palace in July. It will be my first chance to be part of a worldwide musical event. I am very excited!
Distraction is like cheap numbing medication. It shields me from some of the pain for short intervals, while gratitude provides little sunbursts throughout the day. Gratitude reminds me that God still loves me and life is still worth living.
To further help me along, I have been reminded of Jenny's words--"God has been too good to me for me to play the victim anymore." God does all things well. My illness is not an exception. My illness is a mercy. It's a severe mercy (as Jonathan Edwards would say), but a mercy nonetheless, for it is bringing not only me but my entire family into deeper relationship and greater conformity with Christ. Too many days, I have dwelled on the length of time I spend in the bed when I would rather be doing things. Too often, I have focused on the bad, missing the good. To counteract my Polly Pessimist tendencies, I am training myself to respond to those who ask about my day with a list of my victories rather than my struggles.
Allow me to practice:
Yesterday, I enjoyed a quiet morning with Sara. We cuddled, watched Mickey Mouse and read nursery rhymes. I washed dishes, and listened to a Timothy Keller sermon. Thanks to my grandmother, I was able to rest in a quiet house all afternoon. When I woke, I cooked a simple dinner and had a phone conversation with a friend. I was able to eat three meals! I kissed my boy's freckled nose, and rocked my baby to sleep as I sang hymns. I ended my day with a long, relaxing bath and a special word from the Lord. It was a good day.
While reciting my victories is all well and good, it will only carry me so far. We frail humans are tempted to measure all things by the measure of ourselves. I cannot afford this mindset. For the average person, measuring life in such a way cheapens it, reducing it to a feeble shadow of what life should be. For me, making myself the measure of anything is suicidal. My victories will not sustain my hope, even on the good days. And the days when victories are few or obsolete? I shudder at the thought.
Thus, I must look outside of myself--to my God, to His victories.
"Great is the Lord, and greatly to be praised;
And His greatness is unsearchable.
One generation shall praise Your works to another,
And shall declare Your mightly acts.
I will meditate on the glorious spendor of your majesty,
And on Your wondrous works.
Men shall speak of the might of Your awesome acts,
And I will declare Your greatness."
-Psalm 145:3-6
When I consider the God who created the heavens and the earth in a day, the God who conceptualized everything from Mount Everest to the butterfly, the God who calmed the wind and waves with a word, the God who had the power to lay down His life and take it up again, the God who formed me in my inmost being--faulty mitochondria, poor methylation, quirky personality, brown eyes, crazy hair and all--living through these difficult days with my faith, hope, joy and peace intact doesn't seem so impossible. And neither does a miracle.
Nine years ago, I never considered that I would be the one critically ill while Brandon bore the burden of a sick mate. We are mercifully spared from knowing what is coming for us around the corner. Nine years ago, I knew so little of the God who so loved me. In spite of the difficulty, I cannot regret what these nine years have wrought. Knowing God is worth it all.
Who knows what the next nine years may hold? A miracle, certainly.
As for the rest, only time will tell.