I have been on quite the journey since Thanksgiving. My latest little crisis forced me to face some harsh realities--physically, emotionally and spiritually--and though I am a bit bruised with all the jolting around, I am in a better place for it. The Lord's leading isn't always gentle, but hallelujah!--He never lets go of the hand that reaches for Him.
As our burdens press us, weighing us down, He is present in equal measure, holding us up with His mercies (Psalm 94:18). In Morning by Morning, Charles Spurgeon writes about what I call "The Secret of the Cosmic Scales," based on 2 Corinthians 1:5--"Here is a blessed proportion. The Ruler of providence bears a pair of scales--in this side He puts His people's trials, and in that He puts their consolations. When the scale of trial is nearly empty, you will always find the scale of consolation in nearly the same condition. When the scale of trial is full, you will find the scale of consolation just as heavy. When the black clouds gather most, the light is more brightly revealed to us...." (from February 12).
Sometimes the light brings warmth and clarity. Sometimes it exposes the darkest corners of the heart. I have experienced both as you will see in my journal entries. (These entries have been edited for the sake of space, grammar, flow and a small measure of privacy.)
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11/29/13
"I think it's time to look into a major research hospital like John Hopkins or Mayo," Mom said. Her thoughts were echoed by my prayerful grandmother later in the day.
Miserable and confused though I am in the wake of my latest reaction and resulting flare, I am not so sure. The words resonate in the deep places, but I am afraid. I fear the danger, the expense, the difficulty, the time away from my kids, the hardship on my family, but most of all I fear the possibility of being disappointed--again. I'm not sure I could take it. If I go, I must know beyond all question God wills it.
Brandon and I are against this, God. So if it is Your will, change our minds.
11/30/13
I talked to Mom on the phone this morning. She has been researching. She believes I have a type of "mast cell activation disease." If so, Mayo is the place to go.
After reading several medical articles about the disease, I am almost certain she is correct. While there is no way to be sure without proper testing, it is the only disease we know of which covers all of my symptoms, and indeed, I have almost all of them. It explains not only everything I am experiencing in this moment, but also what I have experienced throughout my life. I am both thrilled to have answers and saddened to discover there is no cure. Mast cell disease is usually managed by a mountain of medication (which I am unwilling to take) and avoidance of triggers (which I am already doing to the best of my ability).
So, what can they do for me at Mayo? I have already proven that I do not tolerate antihistamines or steroids. I see little point in the exercise. Why go if I cannot tolerate treatment? I can change my diet and continue my routine here.
From Jesus Calling: "Talk with Me about whatever is on your mind, seeking my perspective on the situation. Rather than trying to fix everything that comes to your attention, ask Me to show you what is truly important. Remember that you are en route to heaven, and let your problems fade in the Light of eternity."
I was able to attend the wedding with very few complications. Praise the Lord! On Sunday, I wrestled as I rested and recovered. It was not a struggle of fear. I was simply asking as Abraham did in Genesis 15, "Oh Lord God, how shall I know?" I was back and forth on whether to pursue things further, feeling like I should but questioning my motives and weighing the cost.
I found a couple of mast cell disease groups on Facebook, and read several posts. As I read the stories and questions of others, I began to understand the value of a diagnosis. We must understand things in our minds at some level before our hearts can believe them. I needed to know the practical points of having a diagnosis before being convicted of its worth.
1) Without a diagnosis, I can get very little accomplished in the medical community. Running tests and getting at-home care have proven to be a bit of a nightmare. With a diagnosis, the specialists I encounter are less likely to think of me as a nutter and actually work with me.
2) If I ever have an accident or need surgery, I need a diagnosis in my records so the doctors/surgeons will know to be careful with me and be prepared for life threatening situations during and after surgery.
3) If something happens to Brandon and I am unable to work, I need to be able to apply for disability. I must have a diagnosis to do that.
4) Many conditions are genetic. It is important I know what is wrong with me so I can better care for my children. They already share several of my symptoms though theirs are not as severe at this time.
And there are other reasons. Shallow and stupid though it is, I want a name to give people when they ask me what is wrong with me. I don't care they won't understand the name or what it means; I just want to be able to give an explanation in five words or less. Knowing what is wrong will give me better insight in caring for myself. I will likely continue with natural medicine exclusively because antihistamines and steroids have turned on me in the past and because I have found mast cell disease patients who are doing quite well only using natural protocol, but it is never a bad thing to know the treatment options. Also, I have a rabid curiosity that needs to be put down. And I can trust that whatever it is that is wrong with me, whether it's mast cell disease or something else, Mayo will dig until they find it.
It was Monday morning before I officially decided I would pursue diagnosis with Mayo Clinic in Rochester, MN. I also decided I will wait until May. I will have to be away for a minimum of two weeks, so we will need all hands on deck. My mom finishes school in early May. She may actually be my travel companion due to the length of the stay and her background in medical laboratory science. Six months also gives me time to arrange my affairs. If we fly, I will have to arrange a private flight. Driving will require lots of planning. I need to find a suitable place to stay. Hotel rooms do atrocious things to my health. The kids will need looking after. And six months gives God time to redirect us if He wishes.
I have been consistently asking God for clarity, and He gave it to me Monday night. My sweet friend, Caroline, who is much like me in health and beliefs about healing, is also in the middle of a health crisis. In rare form, she visited the ER the other night and was referred to none other than Mayo Clinic in Rochester. She spent the day there today (Tuesday). We often find ourselves on similar wavelengths concerning our health. I was astounded that the day I made my decision, she was referred to the very hospital we have chosen. How very kind of God to confirm my decision in such a clear, personal way!
So you see, on one side of my "cosmic scales" sat a health crisis and all the grief that accompanies it, a big decision, revelation and repentance of hidden sin, and a major family event. On the other was God's exquisite nearness, loving rebuke, clear direction and extravagant goodness. I am still amazed that I am happiest when life gets hard, but that is the reality of life lived with Jesus Christ.
You may be struggling as I am to "get into the Christmas spirit" this year. I haven't been in the mood for festivities. I haven't had much patience for Christmas pop tunes. Give me Christmas worship! Worship is what the heavy-laden spirit needs. I invite you to experience with me the greatest gift of Christmas--Emmanuel, God with us. No matter the brand or weight of your suffering, God sees. He knows. He cares. Little or big. Sickness or grief. Draw near to Him this Christmas season. Rest your head upon His breast. Allow Him to fill your loneliness, provide balm to your wounds and bring joy to your sorrow. Blessed are you if you mourn. You will be comforted. Blessed are you if you hunger. You will be satisfied. (Matthew 5)
As our burdens press us, weighing us down, He is present in equal measure, holding us up with His mercies (Psalm 94:18). In Morning by Morning, Charles Spurgeon writes about what I call "The Secret of the Cosmic Scales," based on 2 Corinthians 1:5--"Here is a blessed proportion. The Ruler of providence bears a pair of scales--in this side He puts His people's trials, and in that He puts their consolations. When the scale of trial is nearly empty, you will always find the scale of consolation in nearly the same condition. When the scale of trial is full, you will find the scale of consolation just as heavy. When the black clouds gather most, the light is more brightly revealed to us...." (from February 12).
Sometimes the light brings warmth and clarity. Sometimes it exposes the darkest corners of the heart. I have experienced both as you will see in my journal entries. (These entries have been edited for the sake of space, grammar, flow and a small measure of privacy.)
_________________________________________________________________________________
11/29/13
"I think it's time to look into a major research hospital like John Hopkins or Mayo," Mom said. Her thoughts were echoed by my prayerful grandmother later in the day.
Miserable and confused though I am in the wake of my latest reaction and resulting flare, I am not so sure. The words resonate in the deep places, but I am afraid. I fear the danger, the expense, the difficulty, the time away from my kids, the hardship on my family, but most of all I fear the possibility of being disappointed--again. I'm not sure I could take it. If I go, I must know beyond all question God wills it.
Brandon and I are against this, God. So if it is Your will, change our minds.
11/30/13
I talked to Mom on the phone this morning. She has been researching. She believes I have a type of "mast cell activation disease." If so, Mayo is the place to go.
After reading several medical articles about the disease, I am almost certain she is correct. While there is no way to be sure without proper testing, it is the only disease we know of which covers all of my symptoms, and indeed, I have almost all of them. It explains not only everything I am experiencing in this moment, but also what I have experienced throughout my life. I am both thrilled to have answers and saddened to discover there is no cure. Mast cell disease is usually managed by a mountain of medication (which I am unwilling to take) and avoidance of triggers (which I am already doing to the best of my ability).
So, what can they do for me at Mayo? I have already proven that I do not tolerate antihistamines or steroids. I see little point in the exercise. Why go if I cannot tolerate treatment? I can change my diet and continue my routine here.
From Jesus Calling: "Talk with Me about whatever is on your mind, seeking my perspective on the situation. Rather than trying to fix everything that comes to your attention, ask Me to show you what is truly important. Remember that you are en route to heaven, and let your problems fade in the Light of eternity."
"I will instruct you and teach you in the way you should go;
I will guide you with My eye." --Psalm 32:8
Lord, I give you my problems. Please show me what is important to You.
12/3/13
I suppose there is no harm in running a couple of preliminary tests locally. As clear as a whisper in my ear, God spoke the name, "Dr.__________," which is interesting because of all the doctors I have seen, he may be my least favorite. Sigh. I will call his office.
12/4/13
"Be humble and pretend to be unintelligent," I was advised prior to today's appointment with Dr. ________, but I had already ruined the appointment before I arrived at the office. I was unaware I was speaking with the nurse when I scheduled the appointment the day before. My words were pretty snarky and sarcastic, which alerted me to something rotten within myself. I said stupid things stupidly. From the moment the nurse attached my face to my name and voice, she was cold. As was Dr.___________. He was obviously warned of me. He probably remembered me, too, which couldn't help.
I took the advice I was given. I was soft spoken. I put my inner Hermione Granger aside, and pretended to be clueless. But he called me out when he grew tired of listening to my long list of symptoms for the second time. "So what would you like me to do? Why are you here?" he asked. Because I had told the nurse which tests I wanted run when I scheduled the appointment, he already knew the answer to the question and was waiting for me to ask. The entire exercise was awkward and unpleasant, and it's all my fault. He softened just a bit at the end of the appointment when I said, "I appreciate all your help," but irrevocable damage has been done by my lack of discretion. The fact that he thinks I'm a hypochondriac doesn't help matters.
However, I have learned something about myself from the experience: I have been deeply hurt, and I blame medical doctors for my pain. But that isn't fair. First of all, no doctor goes about trying to hurt his patients. They may not always know how to help, but they never intentionally do harm. Also, Dr. ____________ tried to run these tests 18 months ago. I apparently refused them though I have no recollection of the term "tryptase" prior to last week, and if I did, I certainly wouldn't have understood the significance then. Doctors are only human. They have all been blinded until now. The doctors did not cause my suffering; God did. God blinded them.
For years, I have blamed doctors for their poor and inadequate treatment when the truth is that God could have turned on a light bulb for any one of them had He wanted to. Therefore, the only logical conclusion is that He didn't want to. He has me on a journey, and the destination is not all about physical healing. It may not be about that at all. He has a purpose in mind, and His purposes are all good whether or not they include diagnosis, treatment and healing. I have to let go of my pain which comes from the anger, defensiveness, and blame I feel toward the medical community, which I now need. Doctors are not my enemy.
Here I am, Lord. I blame You. I blame You, and I thank you for my pain; not because pain is good, but because You are good and you mean this pain for my good. My pain, my deep hurt, is a mercy because it sends me to You. I acknowledge that you have darkened minds and will shine a light when and where and upon whom You will.
12/7/13
As I was crying moments ago over the life and death of David Brainerd as told in Piper's The Hidden Smile of God, the thought came to me--"How carelessly Brainerd and Jonathan Edwards regarded health." In answer, God replied, "And you hold it altogether too precious." Out of the exchange flowed a liquid revelation. I could only float along--
I must be careful to view my health, whether good or poor, as a tool for God to wield as He desires for His glory. It is better to hold it in mean esteem than to hold it too dear. Souls are at stake. My soul, Brandon's soul, the souls of my children and whoever else God places in the wake of this illness. Eternal souls are far more precious than mortal lives, than my mortal life. I must be careful of idolatry.
12/9/13
I don't know the correct course. Every time I think I know the next several steps to take, I encounter something which holds me back. I am still "The Planner." I want to know what's next and prepare myself, but God is asking me to trust, to wait, to obey. I remind myself my burden is light in comparison to the weight of glory (2 Corinthians 4:17).
12/11/13
Struck with insomnia once again, I spent some dark, quiet moments in prayer tonight before rising out of bed to write. At least insomnia can be useful. I was praying for ____________ and ______________, telling the Lord how hopeless their situations seemed to me. He spoke the word "seemed" back to me with emphasis. Because of Jesus, no situation is truly hopeless. Their is hope in life and in death "because we do not look at the things which are seen but the things which are unseen because the things which are seen are temporary [not real] and the things which are unseen are eternal [true, real] (2 Corinthians 4:18)." So I prayed for them and others and myself that we would all have eternal eyes, that we would know "the hope of [our] calling, the glorious riches of [our] inheritance in the saints and the exceeding greatness of His power toward us who believe (Ephesians 1:18-19)."
12/13/13
My test results all came back negative. All this means is that I am unlikely to have systemic mastocytosis, and I will receive no further help from Dr. _________ unless it's a psychiatric referral. I don't know what to do. A big part of me just wants to drop it, and continue as I am. I feel no inclination to pursue diagnosis or avoid it. I feel totally at peace. I will put this aside until after Hannah's wedding. I must concentrate on being well enough to attend.
________________________________________________________________________________
I found a couple of mast cell disease groups on Facebook, and read several posts. As I read the stories and questions of others, I began to understand the value of a diagnosis. We must understand things in our minds at some level before our hearts can believe them. I needed to know the practical points of having a diagnosis before being convicted of its worth.
1) Without a diagnosis, I can get very little accomplished in the medical community. Running tests and getting at-home care have proven to be a bit of a nightmare. With a diagnosis, the specialists I encounter are less likely to think of me as a nutter and actually work with me.
2) If I ever have an accident or need surgery, I need a diagnosis in my records so the doctors/surgeons will know to be careful with me and be prepared for life threatening situations during and after surgery.
3) If something happens to Brandon and I am unable to work, I need to be able to apply for disability. I must have a diagnosis to do that.
4) Many conditions are genetic. It is important I know what is wrong with me so I can better care for my children. They already share several of my symptoms though theirs are not as severe at this time.
And there are other reasons. Shallow and stupid though it is, I want a name to give people when they ask me what is wrong with me. I don't care they won't understand the name or what it means; I just want to be able to give an explanation in five words or less. Knowing what is wrong will give me better insight in caring for myself. I will likely continue with natural medicine exclusively because antihistamines and steroids have turned on me in the past and because I have found mast cell disease patients who are doing quite well only using natural protocol, but it is never a bad thing to know the treatment options. Also, I have a rabid curiosity that needs to be put down. And I can trust that whatever it is that is wrong with me, whether it's mast cell disease or something else, Mayo will dig until they find it.
It was Monday morning before I officially decided I would pursue diagnosis with Mayo Clinic in Rochester, MN. I also decided I will wait until May. I will have to be away for a minimum of two weeks, so we will need all hands on deck. My mom finishes school in early May. She may actually be my travel companion due to the length of the stay and her background in medical laboratory science. Six months also gives me time to arrange my affairs. If we fly, I will have to arrange a private flight. Driving will require lots of planning. I need to find a suitable place to stay. Hotel rooms do atrocious things to my health. The kids will need looking after. And six months gives God time to redirect us if He wishes.
I have been consistently asking God for clarity, and He gave it to me Monday night. My sweet friend, Caroline, who is much like me in health and beliefs about healing, is also in the middle of a health crisis. In rare form, she visited the ER the other night and was referred to none other than Mayo Clinic in Rochester. She spent the day there today (Tuesday). We often find ourselves on similar wavelengths concerning our health. I was astounded that the day I made my decision, she was referred to the very hospital we have chosen. How very kind of God to confirm my decision in such a clear, personal way!
So you see, on one side of my "cosmic scales" sat a health crisis and all the grief that accompanies it, a big decision, revelation and repentance of hidden sin, and a major family event. On the other was God's exquisite nearness, loving rebuke, clear direction and extravagant goodness. I am still amazed that I am happiest when life gets hard, but that is the reality of life lived with Jesus Christ.
You may be struggling as I am to "get into the Christmas spirit" this year. I haven't been in the mood for festivities. I haven't had much patience for Christmas pop tunes. Give me Christmas worship! Worship is what the heavy-laden spirit needs. I invite you to experience with me the greatest gift of Christmas--Emmanuel, God with us. No matter the brand or weight of your suffering, God sees. He knows. He cares. Little or big. Sickness or grief. Draw near to Him this Christmas season. Rest your head upon His breast. Allow Him to fill your loneliness, provide balm to your wounds and bring joy to your sorrow. Blessed are you if you mourn. You will be comforted. Blessed are you if you hunger. You will be satisfied. (Matthew 5)
"Troubled believer, do not fret over your heavy troubles, for they are the heralds of weighty mercies."
--Charles Spurgeon, Morning by Morning, February 12.
--Charles Spurgeon, Morning by Morning, February 12.