passing heaven
“Love is here, love is now. Love is pouring from His hands and from His brow. Love is near, it satisfies. Streams of mercy flowing from His side. And to the bruised and fallen, captives bound and broken hearted… He is the lord, He is the Lord. By his stripes he’s paid our ransom. From his wounds we drink salvation… He is the Lord, He is the Lord.“ -Tenth Avenue says it best here.
A much needed reminder of encouragement. I feel like I never stop pushing back tears. It’s not fear, it’s not stress, or being overwhelmed, or going back home. It’s not frustration or leaving Mom and Mayo. It isn’t lack of sleep or too much pain….
It’s Loss. That simply put, it’s loss. Loss of what I want and who I saw myself as, who I think I need to be, and all I love to do. It’s loss of home and job and making my own life. The loss won’t overtake me, but what’s left of it needs to surface, even if only for this moment.
The more I research about what I have in this muscular obscurity and brain abnormality, the more I wonder how I have kept going for so long. To try and imagine the toll it would take on one’s body and mind to have there brain read no pain as high and high pain as unbearable and then to allow the brain and body no amount of significant rest… I would assume it to be impossible. Maybe that’s why it’s taken the medical world so long to even address such possibility in a scientific realm. Oh how much room for error our bodies give us. I used to hate that. I thought I had to strive for more when truth is what a great God, who enables us the ability to function even when so far off of His perfect design. Thus we are all so different, a gift in disguise.
“Why are you striving, these days? Why are you trying to earn grace? Why are you cryin? Let me lift up your face. Just don’t turn away. Why are you lookin for love? Why are you still searching, as if I’m not enough? To where will you go child, tell me where will you run? Cause I’ll be by your side wherever you’re fallin, in the night whenever you’re callin. Please don’t fight these hands that are holdin you. My hands are holding you. Look at these hands and my side. I swallowed the grave on that night, when I drank the world’s sin. So I could carry you in and give you life. I’m gonna give you life.” -another Tenth Avenue favorite.
Dr. Hurt said, “10 out of my 50 patience a week are like you, Heather, and not because this is common, but because the world doesn’t know what to do with you. You all end up here.” For someone who has strived to just be normal since the age of 10, this is a hard sentence to swallow. I’ve learned, over the years, that all of our normals are different and with this being the start of a new beginning, I will receive yet another “new normal”. I prayed for the old to pass. I knew that I couldn’t go on much longer with the amount of hardship I was facing on a daily basis. So even if my outward circumstances don’t change right away, my old has gone and in me God is working on a new creation.
*2 Corinthians 5:17 Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!
How do I function, the Dr.’s wonder, “God!” There is absolutely no other way around it. They can call it determination or personality, but I know what this does to you and there is no amount of strength, determination, or bubbly personality that can keep you surviving such agony and madness. There are times I have to discipline myself to pick up my foot and take a step and there are times I have to concentrate so hard just to hold something in my hand that I believe my brain might explode. HE is how I take another step. HE is how I get out of bed and how I gently care for the kids I teach. HE is how I stay sane and HE is how I hope, cry, and try. There is no human way, because everything I try to do on my own fails at some point. He never does. How overjoyed it makes me to only be a vessel embodying the Holy Spirit.
*2 Corinthians 4:7 We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. 8 We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. 9 We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. 10 Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.
-I used to literally cry out this last song… “How long must I pray, must I pray to you? How long must I wait, must I wait for you? How long till I see your face, see you shining through? I’m on my knees, begging you to notice me. I’m on my knees, Father will you turn to me? One tear in the dropping rain, one voice in a sea of pain… Could the maker of the stars, hear the sound of my breaking heart? One life is all I am, right now I can barely stand… If you’re everything you say you are, would you come close and hold my heart!”
I wanted God to change things. I begged him to show-up. He never left though. He offers me so much more than a meeting to heal and fix. He lavishes me with love and relationship that never goes away. That’s the gift I want to hold onto now and forever. The issue isn’t that we ask God to be a part of the plans we are making and the future we see for ourselves, but in doing that we often miss His voice and plan. Then when reality doesn’t follow our dreams we think God forgot about us and we can’t imagine life any other way. I have to choose to hold onto his promises that He knows best and won’t let my life be a failure, just a different picture than I originally set out for.
*Matthew 7:11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!
moving forward
I have so much to say I don’t know where to begin. It’s taken me some time of silence just to process this all enough to start typing even now. But for those who have followed me done this road and anxiously await something to know, my physical body is healthy. This leaves my brain not as fortunate. The problem does primarily lie in my brain. And since the brain is so complex, a world of unknowns is ahead of me. l I have been diagnosed with Myofascial Pain Syndrome and Chronic Fatigue Syndrome. I will live with them. There isn’t a cure, but there are still avenues to take for relief. There’s still a lot that Dr.’s don’t know about what I have and so there is no target to hit and make things better.
Mayo does have the only place in the world devoted to chronic pain and the leading place for research and help. I return to Mayo June 21st-June 24th for a series of more appointments at the center for chronic pain management and chronic fatigue. They have a 3 week clinic that I will work towards getting in to. It teaches valuable skills towards living and managing what has taken it’s home in my very body. They do know that this residency is often began by a trauma, in my case a spine trauma that went on for quite some time. Even after the trauma is fixed, the brain remains in chronic pain.
A couple of ways it was broken down for us are these… All pain receptors are found in the brain. No matter where you feel pain it registers in your brain. If I were to have my brain scanned, my pain receptors would be signaling as much as someone’s who just had their leg cut off in a car accident. My brain is overstimulated for some reason and for some reason only effecting my right side. If the average person were to play ball or lift something heavy, they may become sore, but since my brain is overstimulated my brain reads that soreness as though I were being stabbed with a knife.
As far as the fatigue comes in to play, we have been informed that these go together often because my brain isn’t recharging. Just like a phone needs to recharge, so do our minds and mine doesn’t because it is always being stimulated with chronic pain. I started new medication today in hopes to cut some of the edge off and help with rest. Dr. Hurt did say he couldn’t function like I do with all that’s going on in my brain and body. That also throws people off, but it’s simply because I have worked very hard at implementing healthy habits towards pain management already. Most people give into it and I have fought to survive against it. Though my grip is about to slip.
That’s where the 3 week clinic comes into play. They get your body into habits and would have me fine tune the skills I know. It’s setting up priorities, making life changes, etc. Everyone’s body responds a little differently and though my brain won’t change scientifically, there’s hope for the ability to do more. Many of the challenges I have already faced this last year will only remain, but there is something to be said about knowing you need to give-up more and so acceptance will be my immediate next step.
One nurse says, “Although you’ll never be able to run a marathon, you could maybe do a fun 5k someday.” Immediately I want to say, “Well, that’s not good enough!” But I don’t. I think to myself the problem isn’t that I don’t necessarily know how to keep the pain manageable at times it’s that I want to do what I want, when I want, and how I want and then… I still don’t want to hurt. Oh God has so much to teach me, such bigger plans, more meaningful, less selfish. So, even though grief wants to steal my heart, I have a lot of future ahead and have a new home at Mayo when needed.
Testing
I saw an amazing man, Dr. Hurt, in internal medicine. No, I didn’t spell his name wrong. :-) I think he’d have more luck if he changed his name to Dr. Fix it, but than again he isn’t doing too bad for himself. Every department I go to, when seeing his name as my primary physician, goes on to tell me that I have the best. For that I am extremely thankful. He scheduled blood work, x-rays, consultations, a neurology appointment, and then some. He listened well and talked better. He gave his best, professional, opinion and then sent me off in great hands here at Mayo.
The system is phenomenal. They could accomplish in a month what it’s taken me 7 years to do on my own. Instead of advising you of the next step or direction to take and then you returning home, finding Dr.’s, calling places, scheduling your own tests a few weeks out, and then trying to get the correct reads and results back to everyone, taking all the info you get and figuring out how to apply it to your life… You just walk down the hall where they have already put you into the system. Everyone works together to utilize your time most efficiently and everything is quickly inputted into one computer system so it’s accessible by all. It’s also nice that the Dr.’s here seem to trust one another instead of my own experience where I find my many Dr.’s in competition. It seems like this is the way it’s meant to be, and not an easy feat I’m sure, considering there are over 35,000 employed.
Anyhow, I spent one of my days, after x-rays and blood work, at the center for pain management and chronic fatigue. I had the first appointments, of about 6 scheduled, with 2 different nurses over there. I spent some time with my neurologist today, got injected with radioactive material, and had a bone scan in the Nuclear medicine department… Fun! The schedule has been grueling honestly. I’m physically exhausted, in pain, and at an emotional loss. But I am also a step farther in my journey and so have to look at the joy in that. The nurses, the bus drivers, the Dr.’s, the receptionists have all been amazing and that helps as well. This place is with no doubt a class above and I feel blessed to be here.
I see Dr. Hurt again today for a follow-up before leaving after he gets all the new test results and reviews from other departments. He will lay a final diagnosis in my lap and then help me set up a treatment plan. A couple very long and weary days are behind us. They have been helpful, but not always what I hoped for… encouraging, though not always what I “wanted”. Isn’t that so much of what this life is? It has been a step by step, conscious decision to remember that my final hope doesn’t fall here, but with the Lord God almighty. I want to cry, kick, and scream for someone to change me. And I want to shout, dance, and sing, because I have Jesus Christ living inside me and together, we are going to make it.
It’s hard to know where to go from here, how to live, what to do. The truth is, that no matter how much you prepare for the best or the worst, you’re never quite ready. We’re human and so our emotions and feelings are real. We are vulnerable beings and even if we want to be strong, we are indeed weak. Praise God that He is strong and knew these days and the following ones long before I have.
2 Corinthians 12:10That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
One person
I’m one person, on the 17 floor, of one building, in one department. There are friends here waiting to get in and they don’t even have the assurance of an appointment. They talk on the phone to those on the other side not knowing how many days they’ll keep up such endurance and patience. Sisters here together, cousins, brothers, friends, parent and child, husband and wife. I can only begin to imagine the work of God in so many hearts and on so many relationships as they hope for a finish line together. People taking off work, traveling, spending money, and waiting… all for life answers.
It makes me realize how we so often live, even as Christians… Wanting there to be a tangible end in sight that we know. Sometimes I think that this would all be bearable if I just knew it would someday fade and if not than just to KNOW would somehow bring comfort. The toughest times of my pain are when the end doesn’t seem to be in sight. It’s enough to make one crazy. And so Mayo exists, to ease that uncertainty and change one’s life here on earth. Don’t get me wrong, I believe Mayo is the ultimate facility in God’s great design for medicine. It’s like no other make-up, as the best of each field work together through humility to figure things out. What a precious gift to have a chance at being a part of it’s amazing design.
But it cannot heal our hearts, nor change the burden that our days have seen. The truth is that our eyes are to be set on a better place, our hearts reaching for a greater hope, and our mind on an eternal finish line. If we focused on our heavenly entrance as the end than we have, not only the comfort, but the joy the we would be healed and made perfect someday.
Isn’t that we are so desperately after anyway? I don’t sit here thinking I will be healed in the next 5 minutes, God can do that in a moment. I anxiously await my turn to see another part of my puzzle. I want a picture painted for me. Oh, but how much greater is the final picture than anything these Dr,’s can offer me in their hands. I hold onto the painting of perfect eternity with my holy Father, seated in his palm of perfect peace and completion.
If anything I feel like I belong here. To live here or work here in itself would bring healing. The healing of knowing you aren’t alone. Another dark attribute of this disease is the mere loneliness. We all share suffering time, an unexpected journey that life has taken us on. We all have no place else to go. We all have cried in the dark and lost sleep to agonizing pain. Our flesh has failed us and we desire to go on as new people. Just wanting a way to survive and know we will. From war veterans who want to move on to mothers who want to return to their children, we have walked the same walk and been born from the same mold. Deep down our hearts are similar.
Everyone has a little piece of comfort too. Every child carries a stuffed animal. They cling to it as though it will pick them up and fly them to another world far better than theirs. It’s their savior, their strength. The older people have newspapers and puzzles to distract them and then there is me. I have my bible, my music, my writing, and you. I have God’s word planted deeply, I pray. So deep that no matter what hits me I will be able to stand firm on a solid foundation.
To see the slightest smile completely warms my heart, because there aren’t many of those out here. Simply people waiting in silence, looking at their pagers (I’m # 16315), not sure if they want it to go off or not. Thank God for the Joy of the Lord. A couple is called by the nurse. ”Good Luck,” says the old man next to me while holding his wife’s purse who is away in the back where we all hope to be.
My hearts song…
Psalm 73:21 Then I realized that my heart was bitter, and I was all torn up inside. 22 I was so foolish and ignorant – I must have seemed like a senseless animal to you. 23 Yet I still belong to you; you hold my right hand. 24 You guide me with your counsel, leading me to a glorious destiny. 25 Whom have I in heaven but you? I desire you more than anything on earth. 26 My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever. 27 Those who desert him will perish, for you destroy those who abandon you. 28 But as for me, how good it is to be near God! I have made the Sovereign Lord shelter, and I will tell everyone about the wonderful things you do.
Psalm 46:1 God is our refuge and strength, always ready to help in times of trouble. 2 So we will not fear when earthquakes come and the mountains crumble into the sea.
10 “Be stil, and know that I am God!”
Psalm 47:1 Come, everyone! Clap your hands! Shout to God with Joyful Praise! 2 For the Lord Most High is awesome. He is the great King of all the earth.
Psalm 48:9 O God, we meditate on your unfailing love as we worship in your temple. 10 As your name deserves, O God, you will be praised to the ends of the earth. Your strong hand is filled with Victory.
Psalm 62:1 I wait quietly before God, for my victory comes from Him. 2 He alone is my rock and my salvation, my fortress where I will never be shaken.
Psalm 91:2 This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust in Him.
My Prayer
Father,
I lay my life in your hands. Since the beginning of my days you have known my body inside and out. You are the great physician. I want to hear what you see. I want the health and healing that comes from your miraculous touch. But even more than that I want what builds my character more like yours, my heart softer, my ways slower, your glory greater, and your kingdom larger! You have shown me so much loving grace. You have held my hand when nobody else could. You feel how I feel and you are my strength. Father, please give me answers and relief of any kind. May I feel you in that room tomorrow and through each word the Dr. speaks. Thank you for your promise to walk with me. I love you and I want to know and long for you more each day. How worthy you are and how blessed am I to be able to stand in awe of your beauty. I pray that the schedule and tests fall into perfect place and my heart into perfect peace. You are my beloved. My one and only. Thank you and amen! Heather
Psalm 116
1 I love the LORD, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
4 Then I called on the name of the LORD :
“O LORD, save me!”
5 The LORD is gracious and righteous;
our God is full of compassion.
6 The LORD protects the simplehearted;
when I was in great need, he saved me.
7 Be at rest once more, O my soul,
for the LORD has been good to you.
8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the LORD
in the land of the living.
10 I believed you; therefore I said,
“I am greatly afflicted.”
11 in my anxiety I cried out to you!
12 How can I repay the LORD
for all his goodness to me?
13 I will lift up the cup of salvation
and praise the Lord’s name for saving me.
14 I will fulfill my vows to the LORD
in the presence of all his people.
15 Precious in the sight of the LORD
is the death of his saints.
16 O LORD, truly I am your servant;
you have freed me from my chains.
17 I will offer you a sacrifice of thanksgiving
and call on the name of the LORD.
PRAISE the LORD!
photos
We’re here
Mom
Wheelchairs EVERYWHERE
Our own piano player
Beautiful art
Me in front of MAYO
Down time at the hotel
The view
no news
The rough news is it has been a long day of waiting since 6am and no room for me to get in. The good news is that I have an appointment tomorrow and so will start seeing Dr.s and get my schedule then. Thanks for your continued support, encouragement, and prayers. I’m tired, weary, and sore, but God is good, faithful, and real, so no worries here.
Jeremiah 31 3 The LORD appeared to us, saying:
“I have loved you with an everlasting love;
I have drawn you with loving-kindness.
4 I will build you up again
and you will be rebuilt.
Again you will take up your tambourines
and go out to dance with the joyful.
