It's cold by the window
I'm not sure where I'm going
It's cold by the window
I'm not sure where I've been
It's cold by the window
I'm not sure if I'm moving
It's cold by the window
I'm rocked along by wind
It's cold by the window
I don't know if I want this
It's cold by the window
I can't tell if I should
It's cold by the window
I leave my heart in pieces
It's warm by the fire
I turn my heart to you
Monday, February 14, 2011
Thursday, February 10, 2011
Swimmer's Ear
Stroke, stroke, breathe.
Stroke, stroke, breathe.
I sink beneath the surface
in an attempt to lose myself
I move forward through my stroke
Humming as I exhale
I have found my rhythm
Stroke, stroke, breathe.
My thoughts move through
water with me, leading
as I go, leaning as I fall
into body before mind
I have lost my rhythm
Stroke, stroke...
I power through the position
faltering with my failure
reaching out for more
grasping at the rhythm
I have found my stride
Stroke, stroke, breathe.
Stroke, stroke, breathe.
Stroke,
stroke,
breathe.
Stroke, stroke, breathe.
I sink beneath the surface
in an attempt to lose myself
I move forward through my stroke
Humming as I exhale
I have found my rhythm
Stroke, stroke, breathe.
My thoughts move through
water with me, leading
as I go, leaning as I fall
into body before mind
I have lost my rhythm
Stroke, stroke...
I power through the position
faltering with my failure
reaching out for more
grasping at the rhythm
I have found my stride
Stroke, stroke, breathe.
Stroke, stroke, breathe.
Stroke,
stroke,
breathe.
Tuesday, February 8, 2011
Define Normal
I just finished my follow-up appointment at my endocrinologist. (For more about what brought me to this place, read last week's post: Patient.) The results? "Normal."
She elaborated patiently. "This is good news," she said. "I agree," I responded. I don't have some incurable debilitating disease, thank God, BUT, I still feel horrible. Oh, and, there's that little problem of my "episodes". I keep having them.
She nodded sympathetically (I say this without sarcasm - she really was very sympathetic) and tried to problem-solve with me. We talked through next-steps - seeing a naturopath, visiting Austin's natural pharmacy and asking for supplements, etc. I could feel my stress level rising.
Here I go again, I thought. A solution that is a non-solution. My thoughts started down a negative, hopeless path as I thought about how desperately I need these episodes to stop. Like, now. And how tired I am of no one having any clear answers, clear solutions. Same song, different verse. Great.
The P.A. kept talking, but I could no longer hear her. Uh-oh, I thought. Here we go. The next thing I remember was a blood pressure cuff on my arm, and the P.A. calling my name. "You with me?" she asked. "Jenny? Can you hear me?" I had done it again, for the who-knows-how-manyth time...the slightest bit of stress and BAM! I'm out. Not fainted, not unconscious, just unable to respond physically while I hear everyone rushing about in a flurry around me. Physically collapsed in a syncopal-like episode while my conscious self is fully engaged. Slight brain fog at times but, otherwise, present and accounted for.
True to form, all of my vital signs were perfect during the episode. Slightly low blood pressure but "to be expected", according to the experts. The funny thing? The woman who had been giving me my results changed her tune slightly after actually witnessing what I had been trying to describe to her. She had called the doctor in to observe in the middle of the episode, and he concurred: we need to treat her.
If you've read my other post, you'll know that all the other specialists I've seen have effectively treated me like I'm some over-dramatic actor vying for attention. That I'm making this up. They come to that conclusion because my vital signs and test results are "normal." But, as the endocrinologist said after witnessing my latest episode this morning, "this is not normal."
Here's where we get into the nitty-gritty. It turns out that my a.m. cortisol level was 7. The normal range is 7-25. So, as the doc put it, I'm technically within normal range, but my results are kind of "pansy." That made me laugh. And made me feel good at the same time. I'm not making this up - my body doesn't produce enough of what I need when I feel any level of stress. It produces some, but not enough. Yes, I can try to manage stress in my life, but I can't magically fix my physical responses. They are real and in need of treatment.
The doctor took one look at me and told the P.A.: "we need to treat her. We can at least see if she'll respond to treatment. Normally, she shouldn't need the standard treatment, but this isn't a normal response. Let's try it and see."
So I took my first pill today. Officially I've been diagnosed with adrenal fatigue. That means my adrenal gland doesn't work as well as it should. The adrenal gland produces cortisol in response to stress - any form of stress (cold weather, for example, or financial pressure; a sore throat, or a conflict with a friend; in other words, physical, or emotional/psychological). Cortisol tells all the other systems in your body how to work well in this heightened state: your immune system, your body's ability to build muscle mass, metabolism of essential vitamins and minerals, and the list goes on. In other words, if your adrenal gland doesn't work well, nothing really works well. No wonder I don't feel good.
The hope is that I'll feel better within a few days. You can pray. I would dearly like to feel better. But more importantly, I would like to learn how to endure...how to persevere. I am weary, I won't deny it. I'm having to fight for hope. Pray that my faith will grow; that even if I see no results I will "not grow weary in doing good." And not just in doing good but also in believing in good.
One final note: I had a revelation about this last night while talking with a friend. About a week ago I checked in with the Lord about my quiet times. I've been disciplined in following where He's leading in my daily time with Him, but I feel...basically, empty. No filling up at all. As if I can't access my Source to get to the energy I need to keep moving. I can hear Him, see Him, observe His presence and work in my life. But, something's missing.
I asked Him about this, wondering, what's up? He pointed out: "Jenny, your heart is weary. You can't handle any more from me right now." The minute I heard Him say that I knew He was right. The last six months have been very taxing on me, for many reasons not the least of which is how much I've had to fight for and carry my daughter Lily through her own health stuff. It has been scarier than I've allowed myself to acknowledge, so there are some unresolved things there I need to deal with. In His grace, He is not going to pile on more right now, but rather, call me to rest. Give me space to process the backlog.
This applies to many areas in my life right now. Obviously, it makes me think of my poor, overworked adrenal gland. It needs a break so that it can regain strength and catch up. The physical reflecting the spiritual and vice-versa. Isn't this the way it always works? In all areas I need recovery more than rest. This is a tricky one for me, a new place. I know how to rest. I have learned that. I don't think I know how to recover. Not yet. I suspect that recovery begins with acknowledgment of the trauma that caused the need for recovery. Hmmm...I'll think more on that and get back to you.
Thanks for reading. And don't forget to stop by Soli Deo Gloria for some Tuesday encouragement!
She elaborated patiently. "This is good news," she said. "I agree," I responded. I don't have some incurable debilitating disease, thank God, BUT, I still feel horrible. Oh, and, there's that little problem of my "episodes". I keep having them.
She nodded sympathetically (I say this without sarcasm - she really was very sympathetic) and tried to problem-solve with me. We talked through next-steps - seeing a naturopath, visiting Austin's natural pharmacy and asking for supplements, etc. I could feel my stress level rising.
Here I go again, I thought. A solution that is a non-solution. My thoughts started down a negative, hopeless path as I thought about how desperately I need these episodes to stop. Like, now. And how tired I am of no one having any clear answers, clear solutions. Same song, different verse. Great.
The P.A. kept talking, but I could no longer hear her. Uh-oh, I thought. Here we go. The next thing I remember was a blood pressure cuff on my arm, and the P.A. calling my name. "You with me?" she asked. "Jenny? Can you hear me?" I had done it again, for the who-knows-how-manyth time...the slightest bit of stress and BAM! I'm out. Not fainted, not unconscious, just unable to respond physically while I hear everyone rushing about in a flurry around me. Physically collapsed in a syncopal-like episode while my conscious self is fully engaged. Slight brain fog at times but, otherwise, present and accounted for.
True to form, all of my vital signs were perfect during the episode. Slightly low blood pressure but "to be expected", according to the experts. The funny thing? The woman who had been giving me my results changed her tune slightly after actually witnessing what I had been trying to describe to her. She had called the doctor in to observe in the middle of the episode, and he concurred: we need to treat her.
If you've read my other post, you'll know that all the other specialists I've seen have effectively treated me like I'm some over-dramatic actor vying for attention. That I'm making this up. They come to that conclusion because my vital signs and test results are "normal." But, as the endocrinologist said after witnessing my latest episode this morning, "this is not normal."
Here's where we get into the nitty-gritty. It turns out that my a.m. cortisol level was 7. The normal range is 7-25. So, as the doc put it, I'm technically within normal range, but my results are kind of "pansy." That made me laugh. And made me feel good at the same time. I'm not making this up - my body doesn't produce enough of what I need when I feel any level of stress. It produces some, but not enough. Yes, I can try to manage stress in my life, but I can't magically fix my physical responses. They are real and in need of treatment.
The doctor took one look at me and told the P.A.: "we need to treat her. We can at least see if she'll respond to treatment. Normally, she shouldn't need the standard treatment, but this isn't a normal response. Let's try it and see."
So I took my first pill today. Officially I've been diagnosed with adrenal fatigue. That means my adrenal gland doesn't work as well as it should. The adrenal gland produces cortisol in response to stress - any form of stress (cold weather, for example, or financial pressure; a sore throat, or a conflict with a friend; in other words, physical, or emotional/psychological). Cortisol tells all the other systems in your body how to work well in this heightened state: your immune system, your body's ability to build muscle mass, metabolism of essential vitamins and minerals, and the list goes on. In other words, if your adrenal gland doesn't work well, nothing really works well. No wonder I don't feel good.
The hope is that I'll feel better within a few days. You can pray. I would dearly like to feel better. But more importantly, I would like to learn how to endure...how to persevere. I am weary, I won't deny it. I'm having to fight for hope. Pray that my faith will grow; that even if I see no results I will "not grow weary in doing good." And not just in doing good but also in believing in good.
One final note: I had a revelation about this last night while talking with a friend. About a week ago I checked in with the Lord about my quiet times. I've been disciplined in following where He's leading in my daily time with Him, but I feel...basically, empty. No filling up at all. As if I can't access my Source to get to the energy I need to keep moving. I can hear Him, see Him, observe His presence and work in my life. But, something's missing.
I asked Him about this, wondering, what's up? He pointed out: "Jenny, your heart is weary. You can't handle any more from me right now." The minute I heard Him say that I knew He was right. The last six months have been very taxing on me, for many reasons not the least of which is how much I've had to fight for and carry my daughter Lily through her own health stuff. It has been scarier than I've allowed myself to acknowledge, so there are some unresolved things there I need to deal with. In His grace, He is not going to pile on more right now, but rather, call me to rest. Give me space to process the backlog.
This applies to many areas in my life right now. Obviously, it makes me think of my poor, overworked adrenal gland. It needs a break so that it can regain strength and catch up. The physical reflecting the spiritual and vice-versa. Isn't this the way it always works? In all areas I need recovery more than rest. This is a tricky one for me, a new place. I know how to rest. I have learned that. I don't think I know how to recover. Not yet. I suspect that recovery begins with acknowledgment of the trauma that caused the need for recovery. Hmmm...I'll think more on that and get back to you.
Thanks for reading. And don't forget to stop by Soli Deo Gloria for some Tuesday encouragement!
Friday, February 4, 2011
Patient
Hi friends.
I've been trying to find a way to write this post. To piece all the disparate parts together, to recount all of the story lines, convey all of the emotions, share all of the thoughts involved in this journey. I've finally decided I have to quit trying to figure it out and just write. It may not be complete, it may not make perfect sense, but here it is. A start, anyway.
Some people have things that plague them their entire lives - that one annoying thing (habit, life area, belief) that you can't shake no matter how hard you try. Mine is health. It seems that no matter what, complicated health issues surround me.
It's been this way my whole life. I've always felt generally sick and tired, ever since I can remember, but never did anyone validate my general malaise or diagnose me with anything. In fact, from an early age I was outright accused of being an over-dramatic hypochondriac - an accusation I still struggle with internally almost daily. Growing up in Austin, one of the airborn allergy capitals of the world, at some point during my adolescence I decided the constant sniffles and low energy level had to be allergies. I wouldn't chase down the symptoms with a doctor because that would be proving "them" right, those owners of the disembodied voices that lingered in order to accuse.
And, the voices in my head told me, I couldn't really be sick. I'm a hypochondriac, remember? This is all in my head.
So I labored on through life, playing sports and dancing and generally feeling yucky. Ignoring or invalidating how I felt because that's what I thought I was supposed to do. Push through, toughen up, get over it, quit complaining.
My senior year in high school the yuckiness became yuckier. I finally had to turn to doctors for help and here is a sampling of what they said:
Here's my caveat: I'm not a victim and doctors aren't evil. Narrow-minded, perhaps. Unwilling to dig deeper and listen well, maybe. Too quick to look for the obvious, expected answer, tal vez. I don't know. I do know that I'm not at all qualified to make that judgment. I'm still working through lots of anger and resentment where doctors are concerned. I won't even pretend to have proper perspective. I'm also trying to sift through how I could have made different choices (like finding a PCP early on who could have managed all the specialists for me - put the pieces together, so to speak).
So here I am at age thirty-three and health continues to be the thing I deal with. Last night my husband took our fifteen-month-old daughter to the ER in an ambulance because she had a seizure. (She's fine now - seizure due to high fever that is now under control, praise God.) That marked the eighty-eighth time I have witnessed and "triaged" a seizure. I only called in the paramedics last night because she showed no signs of coming down from her seizure at the minute and a half mark. Depending on the type of seizure, you can begin to lose brain cells due to lack of oxygen and can even die if the seizure moves past the three minute mark. So yes, we dialed 9-1-1 even though I knew what to do (as did my husband: we're well-versed in seizure protocols).
My three-year-old son had a febrile seizure at age fifteen months.
My husband had two Grand Mal seizures and eighty-four Petit Mal seizures between October of 2008 and March of 2009. A healthy, thriving twenty-nine year old, suddenly he was an epileptic. It's been almost two years since the day he had his last seizure - March 26, 2010. I praise God every day.
My father had to undergo a lung transplant when I was eight months pregnant with my first because he was dieing from pulmonary fibrosis. (It is over three years later, and he's doing very well.)
My daughter was diagnosed with an unexplained gross motor delay last summer (at age nine months) for which we've been in physical therapy at least once per week. At the beginning of all of that - last October - she fell and broke two bones. So began an investigative process that led us to find out she is vitamin D deficient. Now we believe she might also have low cortisol levels, which could explain her overall muscle weakness. We're awaiting those results (yes, the same daughter who was rushed to the hospital last night - for the third time in her little life, by the way).
While pregnant with my son and later with my daughter I started having random, unexplained "fainting" episodes. I put the word "fainting" in quotes because I never completely pass out. I am always conscious and aware, but I am also non-responsive. In other words, I can hear and understand you, but I can not respond. Not open my eyes, nor move my mouth; not lift my finger, nor hold my body up. Despite all of the specialists I've seen, no one has figured it out yet. The episodes are getting worse and more frequent.
The first time I "fainted", my OB said, "well, nothing's showing up on your vital signs or tests. The baby seems to be fine. Pregnant women sometimes faint - it will pass once you deliver the baby." It has been three years and two months since my first episode. They have not stopped.
When they continued with greater intensity and frequency during my second pregnancy, she referred me to a neurologist and a cardiologist. I have had an echo-cardiogram, a tilt-table test, several EEG's, an MRI, several EKG's, continual heart monitoring, bedrest, evaluation in an Epilepsy Monitoring Unit to see if I have epilepsy, and three psychiatric evaluations. There might be more, but I honestly think I've blocked it all out.
When the neurologists sent me to the cardiologists and the cardiologists sent me back to the neurologists - after the OB had sent me to both first, of course - the neurologists finally sent me to a psychiatrist who sent me back to the original neurologist. I'm not making this up. Tens of thousands of dollars in medical costs to my family, my employer...not to mention the emotional cost. I didn't just have doctors subtly insinuating that I was making my symptoms up in my head - they literally referred me to a psychiatrist because they were convinced that is what was happening. Until the psychiatrist disagreed with them, of course. Then it was back to square one. Not once did any of these specialists think to run a simply blood test.
Last summer I got a cold. A really, really bad cold. Six weeks into it I was so tired that I could barely lift my limbs. I tracked down a primary care physician who took me seriously. Because the cold hadn't gone away, she decided to test for mono and to "check my levels". She didn't blame it on post-partem (an accusation, or suggestion, I've heard more times than I can count). She just tried to figure it out.
It turns out I am Vitamin D deficient and Vitamin B12 low - both of which could explain fatigue, weakened immune system, muscle weakness, joint pain (the list goes on). I found this out before we found out about Lily's deficiency. I've been taking supplements for over six months, but I still feel like c-r-a-p. I also continue to have these lovely episodes I was telling you about. Sooooo, my doctor - you know, the one who takes me seriously - ran one last test. Sort of out of desperation. In December she pulled a cortisol level on me (cortisol is produced by your adrenal glands: for more detailed, nerdy information, click here.). She called me from her family's Christmas vacation out of state on New Year's Day to tell me - almost in disbelief - "your cortisol level is low, actually; you need to see an endocrinologist".
A what?
I finally saw the endocrinologist last week. I went in with my armor on. I had research from reputable sites on the Internet along with books published by doctors (all of which said that most doctors do not recognize adrenal fatigue). Three years into this process, I was ready for a fight.
I found a hospital tent, instead of a battlefield.
The doctor I met with listened to me patiently and then said: "yes, it is absolutely possible that you're having these episodes because you have low cortisol. I have patients that this happens to all the time. If your adrenal gland isn't working properly, you literally, physically can not respond to even the most basic levels of stress (cold weather, for example). Your body will simply shut down in response."
She went on to say: "let's start with the basic adrenal tests and then we'll go from there. But don't worry - we'll stick with you and figure this out. There are lots of avenues we can explore."
At the same time - the same week, actually - I saw a pediatric endocrinologist for Lily. She and Lily's neurologist also looked at Lily's "big picture" - the gross motor delay, the D deficiency, the fact that her mother had low D and cortisol while she was in the womb, the muscle weakness - and agreed to run further tests. We're now checking Lily's cortisol to rule that out. If her cortisol is fine, then she truly does just have an unexplained gross motor delay. We'll continue therapy and move on. If her cortisol is low, I'm not sure what the next steps are.
What is my point? For one, to share what occupies most of my time these days. For another, to reflect.
I often feel angry, overwhelmed, tired of dealing with health crisis after health crisis. I want the "full life" Jesus promised - in both body and spirit. But then I get moments like these to look back and reflect. There is fullness here. And I'm not just saying that to give myself a consolation prize. I say it truly, from a place of belief that is - to coin a phrase - in the becoming.
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." (Romans 5: 3-5, NIV)
I don't understand this journey. Even referencing that Scripture feels at once self-aggrandizing and self-pitying, like I'm taking on the victim role all over again. But I choose to believe that there is purpose here, a purpose that is both about me and beyond me. I am learning the place where justice and mercy must meet. I can not sit down and let people go un-cared for - that would be unjust. I must advocate for my daughter, for example, or - even harder - fight for my own care. But neither should I rail against all caregivers, making them the enemy standing on the other side of some demarcation line I have drawn. I need to show them mercy even as I hope to receive mercy from them. Compassion. Kindness. Justice can not truly exist without these.
This is a truth I do not get yet. I want to blame and scream that it is "unfair". I want to tell these people that did not figure it out "if only". "If only you had taken my levels sooner, we might have known what my kids were not getting in the womb." "If only, then maybe we could have helped them." How could you have let this happen?
Funny. I often have the same question for God.
And yet it is the wrong question to be asking, somehow. The right question - the question that makes me right with God - is how can I "love for the day is near"? (Hebrews 10:25, Romans 13:8-14) How can I "love mercy, act justly, and walk humbly" all at the same time? (Micah 6:8)
Short answer? I have no idea. But I know the One who does and that's whose voice I will listen for. When I'm tired, overwhelmed, discouraged. When another health issue confronts me and when I experience health in body as well as mind.
I've been trying to find a way to write this post. To piece all the disparate parts together, to recount all of the story lines, convey all of the emotions, share all of the thoughts involved in this journey. I've finally decided I have to quit trying to figure it out and just write. It may not be complete, it may not make perfect sense, but here it is. A start, anyway.
Some people have things that plague them their entire lives - that one annoying thing (habit, life area, belief) that you can't shake no matter how hard you try. Mine is health. It seems that no matter what, complicated health issues surround me.
It's been this way my whole life. I've always felt generally sick and tired, ever since I can remember, but never did anyone validate my general malaise or diagnose me with anything. In fact, from an early age I was outright accused of being an over-dramatic hypochondriac - an accusation I still struggle with internally almost daily. Growing up in Austin, one of the airborn allergy capitals of the world, at some point during my adolescence I decided the constant sniffles and low energy level had to be allergies. I wouldn't chase down the symptoms with a doctor because that would be proving "them" right, those owners of the disembodied voices that lingered in order to accuse.
And, the voices in my head told me, I couldn't really be sick. I'm a hypochondriac, remember? This is all in my head.
So I labored on through life, playing sports and dancing and generally feeling yucky. Ignoring or invalidating how I felt because that's what I thought I was supposed to do. Push through, toughen up, get over it, quit complaining.
My senior year in high school the yuckiness became yuckier. I finally had to turn to doctors for help and here is a sampling of what they said:
- In response to both of my knees simply going out during dance rehearsal one day, a respected orthopedic surgeon said: "you're developing arthritis. Nothing can be done at this stage. You'll have to wait it out until your knees get so bad that knee replacement surgery is your only option. We're not there yet. In the meantime, no climbing stairs, no dancing certainly, no sports." I was eighteen years old.
- Later, at age twenty-eight, my dog pulled an already weak shoulder almost completely out of joint. The sports medicine doctors I saw said things like: "you have shoulder impingment and tendinitis - you just need to exercise." Now, six years later, I have a hierneated disc in my cervical spine and periodic numbness down both of my arms - all of which is directly related to the original weakness and malalignment of my shoulder joint. The muscles in my right arm are dieing, effectively. Nearly every morning I can't feel my hand and don't have the strength to open my daughter's medicine, for example. The childproof top takes me around ten tries before I can prise it loose.
- When I was pregnant with both of my children I would randomly pass out. In the hospital my OB would run the standard emergency markers: blood pressure, keytones (for dehydration), blood sugar, heart rate, etc. She would then look at me and say, "well Jenny I don't know what to tell you. There seems to be nothing wrong with you physically." Hmmm, does she think I thought it would be fun to get rushed to the hospital by my terrified husband every week or so? Yea right.
Here's my caveat: I'm not a victim and doctors aren't evil. Narrow-minded, perhaps. Unwilling to dig deeper and listen well, maybe. Too quick to look for the obvious, expected answer, tal vez. I don't know. I do know that I'm not at all qualified to make that judgment. I'm still working through lots of anger and resentment where doctors are concerned. I won't even pretend to have proper perspective. I'm also trying to sift through how I could have made different choices (like finding a PCP early on who could have managed all the specialists for me - put the pieces together, so to speak).
So here I am at age thirty-three and health continues to be the thing I deal with. Last night my husband took our fifteen-month-old daughter to the ER in an ambulance because she had a seizure. (She's fine now - seizure due to high fever that is now under control, praise God.) That marked the eighty-eighth time I have witnessed and "triaged" a seizure. I only called in the paramedics last night because she showed no signs of coming down from her seizure at the minute and a half mark. Depending on the type of seizure, you can begin to lose brain cells due to lack of oxygen and can even die if the seizure moves past the three minute mark. So yes, we dialed 9-1-1 even though I knew what to do (as did my husband: we're well-versed in seizure protocols).
My three-year-old son had a febrile seizure at age fifteen months.
My husband had two Grand Mal seizures and eighty-four Petit Mal seizures between October of 2008 and March of 2009. A healthy, thriving twenty-nine year old, suddenly he was an epileptic. It's been almost two years since the day he had his last seizure - March 26, 2010. I praise God every day.
My father had to undergo a lung transplant when I was eight months pregnant with my first because he was dieing from pulmonary fibrosis. (It is over three years later, and he's doing very well.)
My daughter was diagnosed with an unexplained gross motor delay last summer (at age nine months) for which we've been in physical therapy at least once per week. At the beginning of all of that - last October - she fell and broke two bones. So began an investigative process that led us to find out she is vitamin D deficient. Now we believe she might also have low cortisol levels, which could explain her overall muscle weakness. We're awaiting those results (yes, the same daughter who was rushed to the hospital last night - for the third time in her little life, by the way).
While pregnant with my son and later with my daughter I started having random, unexplained "fainting" episodes. I put the word "fainting" in quotes because I never completely pass out. I am always conscious and aware, but I am also non-responsive. In other words, I can hear and understand you, but I can not respond. Not open my eyes, nor move my mouth; not lift my finger, nor hold my body up. Despite all of the specialists I've seen, no one has figured it out yet. The episodes are getting worse and more frequent.
The first time I "fainted", my OB said, "well, nothing's showing up on your vital signs or tests. The baby seems to be fine. Pregnant women sometimes faint - it will pass once you deliver the baby." It has been three years and two months since my first episode. They have not stopped.
When they continued with greater intensity and frequency during my second pregnancy, she referred me to a neurologist and a cardiologist. I have had an echo-cardiogram, a tilt-table test, several EEG's, an MRI, several EKG's, continual heart monitoring, bedrest, evaluation in an Epilepsy Monitoring Unit to see if I have epilepsy, and three psychiatric evaluations. There might be more, but I honestly think I've blocked it all out.
When the neurologists sent me to the cardiologists and the cardiologists sent me back to the neurologists - after the OB had sent me to both first, of course - the neurologists finally sent me to a psychiatrist who sent me back to the original neurologist. I'm not making this up. Tens of thousands of dollars in medical costs to my family, my employer...not to mention the emotional cost. I didn't just have doctors subtly insinuating that I was making my symptoms up in my head - they literally referred me to a psychiatrist because they were convinced that is what was happening. Until the psychiatrist disagreed with them, of course. Then it was back to square one. Not once did any of these specialists think to run a simply blood test.
Last summer I got a cold. A really, really bad cold. Six weeks into it I was so tired that I could barely lift my limbs. I tracked down a primary care physician who took me seriously. Because the cold hadn't gone away, she decided to test for mono and to "check my levels". She didn't blame it on post-partem (an accusation, or suggestion, I've heard more times than I can count). She just tried to figure it out.
It turns out I am Vitamin D deficient and Vitamin B12 low - both of which could explain fatigue, weakened immune system, muscle weakness, joint pain (the list goes on). I found this out before we found out about Lily's deficiency. I've been taking supplements for over six months, but I still feel like c-r-a-p. I also continue to have these lovely episodes I was telling you about. Sooooo, my doctor - you know, the one who takes me seriously - ran one last test. Sort of out of desperation. In December she pulled a cortisol level on me (cortisol is produced by your adrenal glands: for more detailed, nerdy information, click here.). She called me from her family's Christmas vacation out of state on New Year's Day to tell me - almost in disbelief - "your cortisol level is low, actually; you need to see an endocrinologist".
A what?
I finally saw the endocrinologist last week. I went in with my armor on. I had research from reputable sites on the Internet along with books published by doctors (all of which said that most doctors do not recognize adrenal fatigue). Three years into this process, I was ready for a fight.
I found a hospital tent, instead of a battlefield.
The doctor I met with listened to me patiently and then said: "yes, it is absolutely possible that you're having these episodes because you have low cortisol. I have patients that this happens to all the time. If your adrenal gland isn't working properly, you literally, physically can not respond to even the most basic levels of stress (cold weather, for example). Your body will simply shut down in response."
She went on to say: "let's start with the basic adrenal tests and then we'll go from there. But don't worry - we'll stick with you and figure this out. There are lots of avenues we can explore."
At the same time - the same week, actually - I saw a pediatric endocrinologist for Lily. She and Lily's neurologist also looked at Lily's "big picture" - the gross motor delay, the D deficiency, the fact that her mother had low D and cortisol while she was in the womb, the muscle weakness - and agreed to run further tests. We're now checking Lily's cortisol to rule that out. If her cortisol is fine, then she truly does just have an unexplained gross motor delay. We'll continue therapy and move on. If her cortisol is low, I'm not sure what the next steps are.
What is my point? For one, to share what occupies most of my time these days. For another, to reflect.
I often feel angry, overwhelmed, tired of dealing with health crisis after health crisis. I want the "full life" Jesus promised - in both body and spirit. But then I get moments like these to look back and reflect. There is fullness here. And I'm not just saying that to give myself a consolation prize. I say it truly, from a place of belief that is - to coin a phrase - in the becoming.
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." (Romans 5: 3-5, NIV)
I don't understand this journey. Even referencing that Scripture feels at once self-aggrandizing and self-pitying, like I'm taking on the victim role all over again. But I choose to believe that there is purpose here, a purpose that is both about me and beyond me. I am learning the place where justice and mercy must meet. I can not sit down and let people go un-cared for - that would be unjust. I must advocate for my daughter, for example, or - even harder - fight for my own care. But neither should I rail against all caregivers, making them the enemy standing on the other side of some demarcation line I have drawn. I need to show them mercy even as I hope to receive mercy from them. Compassion. Kindness. Justice can not truly exist without these.
This is a truth I do not get yet. I want to blame and scream that it is "unfair". I want to tell these people that did not figure it out "if only". "If only you had taken my levels sooner, we might have known what my kids were not getting in the womb." "If only, then maybe we could have helped them." How could you have let this happen?
Funny. I often have the same question for God.
And yet it is the wrong question to be asking, somehow. The right question - the question that makes me right with God - is how can I "love for the day is near"? (Hebrews 10:25, Romans 13:8-14) How can I "love mercy, act justly, and walk humbly" all at the same time? (Micah 6:8)
Short answer? I have no idea. But I know the One who does and that's whose voice I will listen for. When I'm tired, overwhelmed, discouraged. When another health issue confronts me and when I experience health in body as well as mind.
Tuesday, February 1, 2011
Fear Itself
"The only thing we have to fear is fear itself."
We've all heard it. We've grown up with it (at least, those of us who are older than thirty). Somehow the notion that fear is bad, negative, to be avoided has sunk into our collective consciousness. If you feel afraid, be brave, push through, overcome.
This is an appropriate response in many cases, of course. But it's also inappropriate in other cases. A truth a dear friend taught me several years back. The conversation went something like this:
"I'm afraid," I told my small group as I wept before them.
"Why?" another woman in the group asked.
"Because it's scary," came the response, not from me. Our fearless leader, the female pastor at my church in Los Angeles, looked at me with tenderness in her eyes and said, "Jenny, of course you're afraid. This new venture has risks, it's scary. You would be a fool not to fear, to ignore the realities of those risks. Faith isn't the absence of fear; faith is found in our response to it. Don't spend your energies trying to will away your fear. Spend yourself on fixing your eyes on where God has called you and moving toward it with His hand in yours."
It's okay to be afraid.
I've been thinking about this lately as I've processed with a dear friend who is thinking through some next steps. Fear doesn't necessarily mean you're on the wrong track (I think some of us believe that, if we're afraid - if we don't have peace, then we're outside of God's will). In fact, sometimes fear means you're right where you're supposed to be. Path less traveled and all that.
One last thought before I sign off: this week I instituted Bible verse memorization in our home. I can't believe it's already that time, but something in my mommy-gut tells me it is. Gunnar turns three on Friday, and it's time to let the Word sink into him through memorization.
Where did we start? "There is a time for everything...." (Ecc. 3:1, NIV). I'm trying to teach him that it's okay to bang things when we're pretend-playing the drums, for instance, but not when we're at the table, stuff like that. We'll get to the deeper stuff, I'm sure, but we're starting with the practical, tangible, understandable places in his little world.
The coolest part? As I remind him, I am reminded. "There is a time for everything...." Including fear, courage, despair, hope, suffering, rejoicing. As I think through all of the issues we're dealing with in our little four-member fam, I think about this and am comforted. We won't be where we are forever. This simultaneously gives me a reason to cherish every moment and look forward to the next ones. Thank you, God, for such a hope.
Linking up with Soli Deo Gloria again today. Enjoy!
We've all heard it. We've grown up with it (at least, those of us who are older than thirty). Somehow the notion that fear is bad, negative, to be avoided has sunk into our collective consciousness. If you feel afraid, be brave, push through, overcome.
This is an appropriate response in many cases, of course. But it's also inappropriate in other cases. A truth a dear friend taught me several years back. The conversation went something like this:
"I'm afraid," I told my small group as I wept before them.
"Why?" another woman in the group asked.
"Because it's scary," came the response, not from me. Our fearless leader, the female pastor at my church in Los Angeles, looked at me with tenderness in her eyes and said, "Jenny, of course you're afraid. This new venture has risks, it's scary. You would be a fool not to fear, to ignore the realities of those risks. Faith isn't the absence of fear; faith is found in our response to it. Don't spend your energies trying to will away your fear. Spend yourself on fixing your eyes on where God has called you and moving toward it with His hand in yours."
It's okay to be afraid.
I've been thinking about this lately as I've processed with a dear friend who is thinking through some next steps. Fear doesn't necessarily mean you're on the wrong track (I think some of us believe that, if we're afraid - if we don't have peace, then we're outside of God's will). In fact, sometimes fear means you're right where you're supposed to be. Path less traveled and all that.
One last thought before I sign off: this week I instituted Bible verse memorization in our home. I can't believe it's already that time, but something in my mommy-gut tells me it is. Gunnar turns three on Friday, and it's time to let the Word sink into him through memorization.
Where did we start? "There is a time for everything...." (Ecc. 3:1, NIV). I'm trying to teach him that it's okay to bang things when we're pretend-playing the drums, for instance, but not when we're at the table, stuff like that. We'll get to the deeper stuff, I'm sure, but we're starting with the practical, tangible, understandable places in his little world.
The coolest part? As I remind him, I am reminded. "There is a time for everything...." Including fear, courage, despair, hope, suffering, rejoicing. As I think through all of the issues we're dealing with in our little four-member fam, I think about this and am comforted. We won't be where we are forever. This simultaneously gives me a reason to cherish every moment and look forward to the next ones. Thank you, God, for such a hope.
Linking up with Soli Deo Gloria again today. Enjoy!
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