I know most of you read here for some kind of real update on my health and our family. I find those posts the hardest to write. So, here's a kind've short version, and then I'll share a piece of my heart.
I am two weeks and one day out from my surgery to remove my fusion hardware from my skull base and neck in Maryland. The surgery went well. Like always, getting a tube down my throat was the hardest part, and I got a big old fat lip to show for it. When the anesthesiologist came in to meet me that morning I reminded him he almost took out my vocal cords for my tethered cord surgery. He was SURE he would have remembered that so he had someone go down to a vault of medical records (I mean REAL books) and found my chart. Sure enough, it took him five horrible tries then. He was super excited about the prospect of getting another chance especially since my TMJ has shifted recently. Dear Dr. H came and prayed. It is a humble honor to be blessed by this man who gives every bit of his knowledge and strength to God's glory. I came out smiling but really wigged out about my collagen looking lip. I did well in the hospital on pain medications and was in good spirits. Of course, getting your head and neck cut open hurts, but it hurts so much less than before the surgery. The pain that made me need the surgery was different in a way that makes post op like an exhale for me. In almost all my "situations" (fifteen now if you're counting) I've come out knowing something horrible was excised or something broken was fixed. I can move on with all the other really annoying stuff involved, because I made a choice to take a step towards a better life. That's what this is. Every single day is in my mind the effort it takes to not give up and keep hoping upon hope. In addition to the hardware issue there was a bone spur that had not fully fused. YES! This had to be what I knew was grinding and clicking over there on the right side.
One of the things common with EDS patients following surgery is adrenal failure. We are even given doses of steroids before we even get into trouble. Following my brain decompression and fusion in November of 2011 I did have a pretty serious failure and needed long term treatment with several steroid medications. In the hospital this time I was being given IV drugs and they were drawing blood each morning to check my levels. They had not gone up at time of discharge, but I was pretty antsy to get out of there and took the prescription of steroids and didn't even really talk much at all about the endocrinology stuff. I don't understand endocrinology and throw in the EDS part which makes it more complicated. I have literally been functioning on "fight or flight" since May of 2009 when Danica began her symptoms. It figures I'm one stressed out lady most of the time. I had also been going through what I explained here in several previous posts as huge adrenaline surges prior to and between my Cleveland Clinic surgery and this one. I had the big Maryland trip by myself and was sick and doing all the nesting things I do before surgeries. (That sounds so crazy to really have a pre-surgery list that has applied so many times you use it as a standard.)
Finding out my wallet was stolen at our last stop on the turnpike just happened to be the thing that pushed me over the edge. It could have been anything else I guess, but I felt so violated. The cash I had was stolen. A book of Dan's checks, my checks, debit cards, insurance, id . . . I was angry and sick and so unbelievably overwhelmed. Most of all I was too sick to deal with the phone calls and the run around and the details of cancelling and restarting and getting new. I wanted someone to do it for me but, of course, these kinds of things only work one way. I also had waited, calling the turnpike manager and Panera thinking someone would be the good and turn it in. Instead I had allowed time to pass for fraud to happen. These people were up to no good. Oh, and I keep a little talisman in my change purse, and I loved my wallet. After making my way through all that I was really done for and then came school . . .
By Wednesday night I was so shaky, so sweaty, so cold, so fuzzy and nonsensical, I knew something was not right. My neck had been doing GREAT, so I was not taking much additional medication for pain at all. This felt like I was crashing. I fainted. I chattered and shook. Dan came home and was doing his Dan things, and I came out of the bathroom white as a ghost with a bag and said, "I'm going to the hospital."
Hindsight is 20/20. I should have called 911. I get that. But I didn't feel like my family could SEE me. this happens in situations when people have chronic health conditions all the time. Everyone around, especially the people who love the patient the most, are themselves too burnt out to recognize big changes in in someone's behavior or condition. Dan was shut down. God bless this man. He was doing everything. Danica was to begin kindergarten the next day. He is trying to do a great job at his employer and not carry this mess over there. He feels helpless when it comes to the financial strain. He wants to be "my person" but honestly he just can't some of the time. We get that. I get that. So, that is why I got in the car and drove to the little ER in Green alone.
Fast forward because I'm worn out and this isn't short at all! My dear doctor showed up in the night to be my advocate at the ER. STOP. Read that again. It's so rare. She has been a guidepost on this journey that I would not have lived through without. Tracks up and down my arms from failed IV attempts. A med list a mile long. Shaking and sweating and crying. An ER doctor who was so pompous I thought I would throw up at first introduction. And then she was there. She was the authority needed to validate what a sick girl I am and all I've been through and yes, how crazy it sounds. She sat and talked to me and made me laugh out loud. She always makes me laugh. It was quickly decided to send me by ambulance to Akron City where a few good endocrinologist doctors could see me and try to help.
I know you are dying to hear my funny hospital stories, but I mostly just want to say I hate hospitals. The people who were brave enough to come visit me are angels, and I thank you. I have massive anxiety issues with nights in hospitals for very good reasons. (Think seven weeks of hospitalization when I was pregnant with Danica.) By Saturday they had switched me to oral steroids and again, even though my levels weren't rising, and I felt very badly I wanted to come home and sleep. I took a shower, my head hit my pillow, and I woke up at 1 pm on Sunday. Dan and the girls had already been to church and back. I was that tired! We doubled my dose again today, and I have more doctors on my team and trying to help. I'm thinking if just a few thousand of these dollars were spent on a little place by the sea for this woman of "weak constitution" we might actually build some cortisol! (I'm using too many exclamation points so it's time to wrap this up!)
I don't really know what day it is today. I totally thought someone was bringing us a meal and at 5:20 pm realized it was Tuesday. Thank goodness mama ran to Panera to save the day. I am in bed or my Nest chair and that is all. I thought I was weak before, but it was nothing compared to this. I had a wheelchair delivered yesterday, and it cut me deep. I can't really walk around anywhere. Still, the need to look out and hope for a life even in this body at this time is a huge realization. God has been speaking to me in His word and through people and prayer, and I almost think I've touched the tip of something huge, like a real surrender surviving right along side my endless fight.
I want to tell you about a few very dear people and some little physical tokens that are gifts but so much more and some cards and letters I've been getting that have pure power in them for someone like me. I'll save all that for another post. I guess I just want to remind the many, many of you who still come over to our plain old blogger template site created so long ago to just share about our daughter, Danica, and Chiari and our little family how big a thing it is you keep meeting us here. I peck away notes about our believing and yet begging for help with so much unbelief, and you have shown us more than just passing love. It is Hesed, the Hebrew word for steady marital fidelity or COVENANT LOVE. This is no small thing, my friends. Perhaps bravest of you all are those who continue to pray for our unbelief. People say how strong and inspirational we are but really this is just a painful privilege to get so close to the inner room you can almost touch His humanity. This gets harder not easier. I mean that. The years have taken such a toll. But there is joy in the reward. I believe. We believe.
I read in Lamentations 3 today.
Hesed. Unfailing love. Steadfast. I have to believe.
I am the man who has seen affliction
under the rod of his wrath;
he has driven and brought me
into darkness without any light;
surely against me he turns his hand
again and again the whole day long.
He has made my flesh and my skin waste away;
he has broken my bones;
he has besieged and enveloped me
with bitterness and tribulation;
he has made me dwell in darkness
like the dead of long ago.
One of the things common with EDS patients following surgery is adrenal failure. We are even given doses of steroids before we even get into trouble. Following my brain decompression and fusion in November of 2011 I did have a pretty serious failure and needed long term treatment with several steroid medications. In the hospital this time I was being given IV drugs and they were drawing blood each morning to check my levels. They had not gone up at time of discharge, but I was pretty antsy to get out of there and took the prescription of steroids and didn't even really talk much at all about the endocrinology stuff. I don't understand endocrinology and throw in the EDS part which makes it more complicated. I have literally been functioning on "fight or flight" since May of 2009 when Danica began her symptoms. It figures I'm one stressed out lady most of the time. I had also been going through what I explained here in several previous posts as huge adrenaline surges prior to and between my Cleveland Clinic surgery and this one. I had the big Maryland trip by myself and was sick and doing all the nesting things I do before surgeries. (That sounds so crazy to really have a pre-surgery list that has applied so many times you use it as a standard.)
Finding out my wallet was stolen at our last stop on the turnpike just happened to be the thing that pushed me over the edge. It could have been anything else I guess, but I felt so violated. The cash I had was stolen. A book of Dan's checks, my checks, debit cards, insurance, id . . . I was angry and sick and so unbelievably overwhelmed. Most of all I was too sick to deal with the phone calls and the run around and the details of cancelling and restarting and getting new. I wanted someone to do it for me but, of course, these kinds of things only work one way. I also had waited, calling the turnpike manager and Panera thinking someone would be the good and turn it in. Instead I had allowed time to pass for fraud to happen. These people were up to no good. Oh, and I keep a little talisman in my change purse, and I loved my wallet. After making my way through all that I was really done for and then came school . . .
By Wednesday night I was so shaky, so sweaty, so cold, so fuzzy and nonsensical, I knew something was not right. My neck had been doing GREAT, so I was not taking much additional medication for pain at all. This felt like I was crashing. I fainted. I chattered and shook. Dan came home and was doing his Dan things, and I came out of the bathroom white as a ghost with a bag and said, "I'm going to the hospital."
Hindsight is 20/20. I should have called 911. I get that. But I didn't feel like my family could SEE me. this happens in situations when people have chronic health conditions all the time. Everyone around, especially the people who love the patient the most, are themselves too burnt out to recognize big changes in in someone's behavior or condition. Dan was shut down. God bless this man. He was doing everything. Danica was to begin kindergarten the next day. He is trying to do a great job at his employer and not carry this mess over there. He feels helpless when it comes to the financial strain. He wants to be "my person" but honestly he just can't some of the time. We get that. I get that. So, that is why I got in the car and drove to the little ER in Green alone.
Fast forward because I'm worn out and this isn't short at all! My dear doctor showed up in the night to be my advocate at the ER. STOP. Read that again. It's so rare. She has been a guidepost on this journey that I would not have lived through without. Tracks up and down my arms from failed IV attempts. A med list a mile long. Shaking and sweating and crying. An ER doctor who was so pompous I thought I would throw up at first introduction. And then she was there. She was the authority needed to validate what a sick girl I am and all I've been through and yes, how crazy it sounds. She sat and talked to me and made me laugh out loud. She always makes me laugh. It was quickly decided to send me by ambulance to Akron City where a few good endocrinologist doctors could see me and try to help.
I know you are dying to hear my funny hospital stories, but I mostly just want to say I hate hospitals. The people who were brave enough to come visit me are angels, and I thank you. I have massive anxiety issues with nights in hospitals for very good reasons. (Think seven weeks of hospitalization when I was pregnant with Danica.) By Saturday they had switched me to oral steroids and again, even though my levels weren't rising, and I felt very badly I wanted to come home and sleep. I took a shower, my head hit my pillow, and I woke up at 1 pm on Sunday. Dan and the girls had already been to church and back. I was that tired! We doubled my dose again today, and I have more doctors on my team and trying to help. I'm thinking if just a few thousand of these dollars were spent on a little place by the sea for this woman of "weak constitution" we might actually build some cortisol! (I'm using too many exclamation points so it's time to wrap this up!)
I don't really know what day it is today. I totally thought someone was bringing us a meal and at 5:20 pm realized it was Tuesday. Thank goodness mama ran to Panera to save the day. I am in bed or my Nest chair and that is all. I thought I was weak before, but it was nothing compared to this. I had a wheelchair delivered yesterday, and it cut me deep. I can't really walk around anywhere. Still, the need to look out and hope for a life even in this body at this time is a huge realization. God has been speaking to me in His word and through people and prayer, and I almost think I've touched the tip of something huge, like a real surrender surviving right along side my endless fight.
I want to tell you about a few very dear people and some little physical tokens that are gifts but so much more and some cards and letters I've been getting that have pure power in them for someone like me. I'll save all that for another post. I guess I just want to remind the many, many of you who still come over to our plain old blogger template site created so long ago to just share about our daughter, Danica, and Chiari and our little family how big a thing it is you keep meeting us here. I peck away notes about our believing and yet begging for help with so much unbelief, and you have shown us more than just passing love. It is Hesed, the Hebrew word for steady marital fidelity or COVENANT LOVE. This is no small thing, my friends. Perhaps bravest of you all are those who continue to pray for our unbelief. People say how strong and inspirational we are but really this is just a painful privilege to get so close to the inner room you can almost touch His humanity. This gets harder not easier. I mean that. The years have taken such a toll. But there is joy in the reward. I believe. We believe.
I read in Lamentations 3 today.
Hesed. Unfailing love. Steadfast. I have to believe.
I am the man who has seen affliction
under the rod of his wrath;
he has driven and brought me
into darkness without any light;
surely against me he turns his hand
again and again the whole day long.
He has made my flesh and my skin waste away;
he has broken my bones;
he has besieged and enveloped me
with bitterness and tribulation;
he has made me dwell in darkness
like the dead of long ago.
He has walled me about so that I cannot escape;
he has made my chains heavy;
though I call and cry for help,
he shuts out my prayer;
he has blocked my ways with blocks of stones;
he has made my paths crooked.
He is a bear lying in wait for me,
a lion in hiding;
he turned aside my steps and tore me to pieces;
he has made me desolate;
he bent his bow and set me
as a target for his arrow.
He drove into my kidneys
the arrows of his quiver;
I have become the laughingstock of all peoples,
the object of their taunts all day long.
He has filled me with bitterness;
he has sated me with wormwood.
He has made my teeth grind on gravel
and made me cower in ashes;
my soul is bereft of peace;
I have forgotten what happiness is;
so I say, “My endurance has perished;
so has my hope from the Lord.”
Remember my affliction and my wanderings,
the wormwood and the gall!
My soul continually remembers it
and is bowed down within me.
But this I call to mind,
and therefore I have hope:
The steadfast love of the Lord never ceases
His mercies never come to an end;
they are new every morning;
great is your faithfulness.
“The Lord is my portion,” says my soul,
“therefore I will hope in him.”
The Lord is good to those who wait for him,
to the soul who seeks him.
It is good that one should wait quietly
for the salvation of the Lord.
It is good for a man that he bear
the yoke in his youth.
and therefore I have hope:
The steadfast love of the Lord never ceases
His mercies never come to an end;
they are new every morning;
great is your faithfulness.
“The Lord is my portion,” says my soul,
“therefore I will hope in him.”
The Lord is good to those who wait for him,
to the soul who seeks him.
It is good that one should wait quietly
for the salvation of the Lord.
It is good for a man that he bear
the yoke in his youth.
Let him sit alone in silence
when it is laid on him;
let him put his mouth in the dust—
there may yet be hope;
let him give his cheek to the one who strikes,
when it is laid on him;
let him put his mouth in the dust—
there may yet be hope;
let him give his cheek to the one who strikes,
and let him be filled with insults.
For the Lord will not
cast off forever,
but, though he causes grief, he will have compassion
according to the abundance of his steadfast love;
for he does not afflict from his heart
or grieve the children of men.
For the Lord will not
cast off forever,
but, though he causes grief, he will have compassion
according to the abundance of his steadfast love;
for he does not afflict from his heart
or grieve the children of men.
I carry this gift with me in my belief and unbelief. This beautiful new song by Audrey Assad has been on replay here. Every word holds weight.
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