A little humor...

Sarah Lillie's Top 10 Reasons You Might Be a Medical Junkie

10. You send birthday and Christmas cards to the receptionist at your surgeon's office

9. You have a song you wrote that goes to the on-hold music at your doctor's office phone 

8. When you get taken back to your exam room, you think, "Hey, this isn't my regular room!"

7. When a new issue pops up, you have no idea which of your 5 doctors offices to call first.

6. But you don't have to look up any of those numbers because you have them all memorized.

5. When someone answers the phone at your doctor's office and they don't identify themselves, you know which receptionist you are talking to and ask them about their kid/dog/husband/lunch that day.

4. You have to explain your past medical procedures to your doctor examining you, as they are not sure what it is.

3. You can tell the nurse, "no, this vein doesn't give much, but this one in my left hand is good, but careful when you pull the needle out as I am a bleeder."

2. You find the rhythm of an MRI soothing, and you wrote a song called MRI Lullaby that you sing while you are in one... And you are thankful when the most complicated test ordered is "just an MRI".

1. In the middle of the night, you don't need to turn on your light to figure out which medicine bottle you need... You can just shake and know your pills "by sound."

If you can't laugh...

The prayers of the people

Things with my health are not good. The numbness I had experienced from a few weeks ago has now spread through most of my body. We are seeing a neurologist and they are working on performing tests (including a spinal tap) to try and diagnose what is going on. Some very scary suggestions have been given to what is going on. We are in a waiting game to get this all figured out, and frankly, it is terrifying.

In this process, I have had many people comment on how good my attitude is through all this. I do also feel a very deep sense of peace at many points of my day. I am not saying that I am perfect... I have had many times too of complete break down and many tears have been shed. But overall, I have had an okay attitude overall.

I am CONFIDENT this is not of my own doing.

I think back to the story of Esther. Esther had become queen in Persia and had received some terrifying news. News that the King was planning to kill all of her people. Her uncle told her what was happening and begged her to go to the King to stop the murder of all the Jews.

Mordecai: ¹³ Tell Esther, “Don’t be fooled. Just because you are living inside the king’s palace doesn’t mean that you out of all of the Jews will escape the carnage. You must go before your king. ¹⁴ If you stay silent during this time, deliverance for the Jews will come from somewhere, but you, my child, and all of your father’s family will die. And who knows? Perhaps you have been made queen for such a time as this.” -Esther 4:13-14

Esther was very scared to go to the King. If to we're not invited to go see the King, and you decided that you would like to speak to him, and you just showed up, you could be killed! It wasn't allowed. Only if the King found favor with you, and extended his golden scepter to you, would you life be spared. Esther knew this, and knew that one of the King's previous Queens had been killed for something arbitrary (which was what led to her becoming queen). She was terrified to try and go see the queen to convince him to not kill her and her people. But the words from Uncle, "Perhaps you have been made queen for such a time as this," encouraged her that this was what God's will was for her. So she sent these words to her uncle:

Esther: Tell Mordecai, ¹⁶ “In preparation for my audience with the king, do this: gather together all the Jews in Susa, and fast and pray for me. Intercede for me. For three days and nights, abstain from all food and drink. My maids and I will join you in this time. And after the three days, I will go in to the king and plead my people’s case, even though it means breaking the law. And if I die, then I die!”

¹⁷ Mordecai left the king’s gate and put all of Esther’s instructions into action.

The entire community of Jews surrounded Esther in prayer. They fasted for this task she was going to complete. The whole of Esther's people covered her in prayers. Prayers for strength. Prayers for courage. Prayers for the King to show His mercy. They came together and uplifted her to the greatest King.

Over the last few weeks, Bryson and I have also been lifted up and covered in the prayers of "our people." I know many people, near and far, have been praying for peace, for strength, for healing, for endurance, for insurance to quickly approve tests, for doctors to have wisdom to figure out what is going on... For many other things that I am sure I do not know about. I am positive that these prayers are what is getting me through with my "great attitude" that everyone is seeing in me. I am sure that these prayers are what are getting me out of bed every morning and not just pulling the covers up over my head and giving up.

God has not answered the prayers for complete healing yet. If some of the things that are being proposed are true, there probably won't be a complete healing that happens. Maybe there will be if it is some of the "lesser" things they think it might be (which are still pretty scary but possibly curable). But God is sustaining me like crazy right now. he is giving me a peace that passes all my understanding. He is giving me strength to make it through my days at work.

After Esther spent three days in prayer with her people, she went to the King's inner court.

5 When the third day arrived, Esther put on her royal robes and stood in the inner court of the palace across from the king’s rooms. The king was sitting on his throne facing the palace entrance. ² He was pleased when he noticed Queen Esther waiting in the court. He extended his gold scepter with his hand, inviting her in. Esther walked toward him, and when she was close enough, she reached out and touched the king’s scepter.

The prayers of Esther and her people spared her life with the king. The story continues that Esther finally does ask the king to spare her people, and he grants her request (as well as executing the man who was responsible for the plot to kill the Jews). Today, there is a festival, Purim, that is celebrated through gifts of food and drink, charity to the poor, and a celebratory meal, to commemorate the way God provided for the Jews and the way God worked through Esther, who was made queen "for such a time as this".

I don't know why I have taken ill as I have. I know that maybe it will someday be made apparent, that I went through all of this medical trial for "such a time as this." Perhaps it is for people to see the way God's prayers have worked through me to show a "great attitude" while I am also scared out of my mind. Perhaps it is for some other reason that I have no idea of yet. However, I am so thankful for the prayers of my people. The prayers that are keeping me going. The prayers that are sustaining me. The prayers that are reminding me of God's faithfulness and sovereignty during this time.

Thank you for your prayers... And keep them coming.

In your everlasting arms

All the pieces of my life

From beginning to the end

I can trust you

In your never failing love

You work everything for good

God whatever comes my way

I will trust you

Hello Lord?

I woke up Monday morning, and my feet were numb. They were tingly and I didn't have much sensation in them. I thought it was weird, but kind of brushed it off.

By night time, the numbness had moved into my groin and bootie. I started getting scared. New numbness could mean something pressing on the nerves in my spine.

By Tuesday, the numbness now was in my legs. I got terrified.

All sorts of things went through my imagination. I searched on the internet. All sorts of new things started running away with my imagination. My SCS rep told me in the doctors office later, "You canNOT webMD yourself!" Probably good advice... as I had convinced myself I might have MS.

As all these fears were running through my mind, the P.E. teacher at my school posted on Facebook:

Read in Jeremiah this morning ; "I have loved you with an everlasting love; therefore I have continued my faithfulness to you..." What a great God that in spite of my flaws and follies he will always be faithful. What grace!

I told him thank you for posting, thank you for the reminder. Yet, I did not feel in my soul that God has always been faithful to me. In the face of fear, I did not have confidence that God would be faithful during this new trial.

I listened to a couple songs of Sara Groves on the way to the doctors office. The first song was a reminder of the verse Max had posted earlier that day.

Morning by morning I wake up to find the power and comfort of God's hand in mine. Season by season I watch him amazed, in awe of the mystery of his perfect ways. All I have need of his hand will provide. He's always been faithful to me. - He's Always Been Faithful

I heard the words, and again, I thought, "God, I don't feel very provided for right now. I don't feel like you are being faithful if I have to go through another back surgery." The next song said:

Right now I don't hear so well and I was wondering if you could speak up. I know that you tore the veil so I could sit with you in person and hear what you're saying, but right now, I just can't hear you. I don't doubt your sovereignty, I doubt my own ability to hear what you're saying and to do the right thing, and I desperately want to do the right thing. Somewhere in the back of my mind I think you are telling me to wait, and though patience has never been mine, Lord I will wait to hear from you. - Hello Lord

This one resonated a bit more. I was feeling very abondoned by God's voice today. I could not believe that after a few months of really being somewhat okay with my pain, I was back into a very scary place, where everything seemed to be falling apart again. I couldn't hear God speaking to me. I couldn't feel that it was going to "be okay."

We went to the doctor. They said there is a possibility that my nerves are just inflamed and angry from all the extra activity we did in Chicago. They put me on a steroid to help calm the nerves and reduce inflamation. If that does not work, then there might be something more wrong. There could be scar tissue pressing on the nerves. There could be another disc problem. There could be something else. I might have to have a myelogram again (those are horrid tests) since I can't have an MRI with my implant now.

I am feeling like I am coming out of the "unending shadows of death’s darkness" a little bit, and hoping that the steroids take care of it. But I am still a little scared that it won't be "that easy." It never seems to be that easy for me.

I am still having a hard time today feeling the words "He's always been faithful to me" really feel like truth. However, I find the more I tell myself, "He's always been faithful... He's always been faithful... He will never leave or forsake me (Deut 31:8)... There is nothing that can separate us from the love of God in Christ Jesus (Rom. 8:38-39)... The Lord will be with us wherever we go (Josh. 1:9)... The Lord is my strength and my defense (Is. 12:2)..." the more I believe it (and the more I am thankful for my years in AWANA).

God has spoken through these verses to me. He spoke through the 30+ people who have posted on my Facebook wall that they are praying for me. He has spoken through the ways his grace and love has carried me through in the past.

I am still scared. I am still feeling a little doubtful right now of God's faithfulness. However, God is speaking to me. I may not be hearing so well right now, but I know He is there. I know He is speaking. I know He allows me to sit with him. He is telling me to wait right now. To trust. It might not "be okay." But I am trying to remember that yes, God has always been faithful to me.

Keep speaking to me, Lord. I am trying to listen.

Morning by morning new mercies I see...

I have a beautiful, amazing friend, who for the purpose of this blog, I am going to name Grace. I chose this "fake name" on purpose. My friend "Grace" is full of grace. She is the kindest, most caring, selfless person I have ever met. She gives grace and love to everyone around her. She is one of the most beautiful people I have ever known.

Grace has a lot of health problems herself. She struggles with chronic pain and chronic conditions every day. Yet, her and her husband wanted to have a child. They struggled with becoming pregnant. There were a lot of things that pointed to her not being able to have children. But God gave her the gift of a little life inside her. But, then they found out there were a lot of complications. The baby was growing strong, but due to some mechanics of the pregnancy, she was super high risk. Grace would have to go on bedrest at about 30 weeks. Emergency C-Section at 35 or 36 weeks. This condition was very, very rare, and all the medical journals said that it never changes.

The medical journals did not realize that we have God on our side.

God gave Grace, her husband and her little miracle man another miracle. The situation changed. It was not supposed to change. Everyone said it wouldn't. In this rare, rare sitation, the change is even more rare. God's mercies and grace poured over Grace and her beautiful family.

I have another friend who I will call Hope. She had a surgery to correct her back pain about 3 years ago. Unfortuantely, her fusion cause her spine to be fused in an awkward position, that now has left her in more pain and she has had to go on permanent disability. Hope struggles to complete daily tasks like showering and putting on makeup. She has what she calls a "three-day week." If she schedules more than about 3 activities in a week, she is unable to function for days at a time due to pain flare-ups. She is currently writing a book about being in pain all the time. This week, she posted, saying, "Writing about being in pain and transitioning from able-bodied to disabled is making me sad." Hope often feels like there is little hope in her life for a miracle.

So why does Grace get a MIRACLE, and Hope is still waiting for hers?

Here is the answer: I do not know.

I don't know why Hope and I are still not healed. I do not know why Grace recieved grace from God for her and her beautiful boy. But, I think that everyone of us can cry for joy at the miracle that Grace has recieved.

I often feel some of the same discouragement I know Hope feels. My mom often tells me that she has faith that I will one day be healed. I have said often, that is it easier for me to accept the fact that I am injured and in pain, and learn to live life as my new normal of being in pain often. My mom still has hope for me. On many occasions, both Hope and Grace have expressed their hope for my life. And I have hope for Hope. And I had hope for Grace when she felt very hopeless before she recieved her news of change this week.

It is so easy to hope for others, yet so hard to hope for ourselves. We see ourselves in a very small box of what life is. We are confined by the chains of our situations, and unable to see past them. Yet others often see past our limited view and express their hope for us when we cannot.

C.S. Lewis said, "Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see." There are ways that God works around us all day every day. Some of them are big ways that are easy for us to see, like Grace's miracle. Some of them are too big for us to see, that we may take for granted every day. Sometimes though, we wait for a miracle of healing, of freedom, and change; and we wait... and wait... and one doesn't come. A child gets cancer. A woman loses a child to miscarriage. An innocent man is locked up in prison for a crime he did not commit.

Adam Hamilton writes about miracles in his book Why? Making Sense of God's Will. He writes that,of course, God can do miracles. But miracles are miracles because they are rare. They don't happen every day. God works through us every day, but miracles don't come all the time. Hamilton writes, "God's primary way of working in our world is to influence us and others - giving us peace and strength, wisdome and patience - while using the natural means God created to accomplish God's purposes."

I told Hope this week, "You may not be able-bodied in every way that you used to be, but you are so much more able-spirited because of what you have gone through. Your life and testimony are an inspiration to so many people. It probably isn't the testimony you wish you could share, but you have encouraged me so much, and I hope you are able to see that purpose of your pain. It is not easy to live the calling to which you have been called, but you are amazing for answering that call every day with your encouragement and life story that you share with everyone." The way God works in her life right now is that God sustains her., and gives her life a purpose. That she is able to encourage and share her story to everyone around her. They see that she is a woman full of grace and love, and are encouraged through her struggles that God will provide for them too. Just like the song says,

Morning by morning new mercies I see! All I have needed Thy hand hath provided. Great is Thy faithfulness, Lord unto me.

When Grace told me of her miracle today, I wept tears of incredible joy. I wanted to shout and scream at the hope that is placed in my life. I wanted to share that hope and joy with everyone around me, and it wasn't even "my miracle." Grace still has a long road ahead of her that is scary and might be full of other parts that she can't see past.

Yet, I pray that in our times of darkness, of captivity, of being unable to see past the situations we find ourselves in, we are able to look at our circumstances and see the miracles written all over the pages of our lives and the lives around us. And through those miracles, see the hope that surrounds all of us during those times. There will be sorrow. There will be tears of sadness. We may never get our big miracle that we were hoping for... and I still don't know why. But I know that in our weakness, God uses his strength to work in our lives. He will not abondon us, and will use others to help foster the hope in our lives.

With "strength for today and bright hope for tomorrow", I pray hope and grace and peace for you.

I'll Cover You...

But sweet kisses I've got to spare

I'll be there and I'll cover you

I've longed to discover something as true as this is...

I have often been the patient. But this week I am the care giver. I joking posted today, "if we have no other strength in our marriage, at least we have the in sickness covered. Someday I look forward to seeing what and in health is like." A few weeks ago I blogged about the role reversal of my husband and I with his knee injury (see my post on role reversals here). This post is not so much about a role reversal as it is the actual surgery day, and what it is like to be the watcher, not the patient on surgery day.

When we went into the hospital, I helped husband fill out forms. I went to the business office and worked on the payment aspects before surgery. I listened super closely to the doctor to make sure I knew exactly what the surgery would entail. But what shocked me the most about being on the other side of the surgery was the worry. When I walked in after Husband had been prepped, it shocked me how much seeing him in his hospital gown and hair net frightened me.

During my surgeries, I really didn't think much about my attire before the surgery. I spent time in the back without Husband there getting prepped. It was a gradual transformation of going from person to patient. And I was so focused on "what is this going to be like" opposed to "what do I look like?"

When they took Husband back, I waited for about 20 minutes before I went back. Then when I got back there, it was a shock to me at the transformation to being a patient. It was a reality. I was about to give my love over to the hands of the doctors. And that was super scary. Part of the fear had to do with we didn't know what the surgery would be. Would it be arthroscopic or would they have to cut all the way? Was the recovery going to be sort of easy or very difficult?  The hospital attire put so much fear in my heart. 

But. I didn't want my fears to be transferred to Bryson. Yesterday my job was that of the care giver. To hold hands. To reassure to some extent. To be strong. Husband was scared himself. It was my turn to be the rock. I always thought before my surgeries that Husband probably was not worried. He always seemed so calm. I have since learned that he was just as worried as I... But he didn't want to show it to me. So yesterday I held it together. I prayed. I helped with medical information. I held it together.

Well, almost. I did tear up a little when I was kissing him goodbye as he went in the operating room. That was so hard... To watch the man that is my best friend, my whole world, be wheeled away where I couldn't be and couldn't help, and where he would be the most helpless. But I am sure no one would have wanted my help in that OR anyway.

Then I went and waited.

And waited.

I was thankful for my crochet as I waited.

I always slept through the waiting part. Not yesterday! I got to be the one wondering how it was going. Wondering if he was doing ok with the anesthesia. Scared that "something" might happen. Every time the door opened where the doctors came out, I turned hoping it was Husband's surgeon.

When the waiting was over, task mode came in. How to care for Husband. How much to ice. How to operate a new machine to help with his healing. What to watch for in case a complication arose. How to get him in the car and on the couch.

It has been a huge eye opener to see what it is like to be the person who is the support system in the surgery process.

My absolute favorite musical is Rent. In this show, one of the characters is a caregiver in the end of life for his boyfriend who is dying of AIDS. They sing a very cute song together in the first act called "I'll Cover You."

Just slip me on

I'll be your blanket

Whenever, whatever I'll be your coat

Collins reprises this song after his lover dies. It is one of my favorite moments in all of Broadway. It is the song of giving of ones self to the other person. When you're cold and you're lonely. It is a song of searching for something more to do when the other person is hurting, but you know there is not much more you can physically do to help. When your heart has expired. It is the song of a care giver. When your worn out and tired. 

I am still having my eyes opened all the time to what it is like to be on the other side of surgery time. But my darling, I'll Cover You. And I have lots of kisses to spare, when you are worn out and tired, when you are cold and you're lonely. I'll Cover You.

The science....

This was an article in the Denver Post today regarding SCS and specifically the doctor who did my procedure. Very interesting...

Spinal pacemakers help block pain

Care giving

He steps up to the plate. He eyes the pitcher. He looks into right field where he wants to aim the ball. The pitch comes. He angles down to hit the ball. Great connection... Great hit...

   

This is what I see as Husband is playing softball. I watch the ball fly, and i get excited that he might get a good base hit, but then I hear a scream. I look down and Husband is rolling in the dirt grabbing his leg and screaming. Fear grips my heart as I run to the field. I think he might have hit himself with the bat. But he says his knee buckled, and is not in the right place. So I run to the car as some guys help him hobble off the field. I bring the car through the gate and he gets in the back seat... In agonizing pain. I drive safely but quickly to the ER.

3 hours in the ER. Dislocated knee. Possible ligament tear. A bone chip floating in his knee.

When they finally are about to discharge us, my tears come from fear held in and worry and love for Husband.

When we get back to my parents' house, I help him get undressed. I help him step into the shower. I help him reach behind him to get the shampoo. I dry him off. I get his knee brace back fastened, and get the water for his meds. He looks at me and asks, "How did you do this three times, after three surgeries?" I just shrug my shoulders, but in my mind I am thinking the same thing, "how did you handle caring for me so closely and doing everything for me after three surgeries, and every time I have a bad pain day?"

The last few days have been an eye opener for both of us. Husband has been needing lots of help with small tasks, and I am the care giver. Care giving is a lot of physical labor, which at times has been hard for my body with my pain problems. And some things needed to be done today. With the end of school and meetings every night this week for Husband, housework fell behind. Husband always does food shopping and cleaning on Fridays. It fell to me this week. The dishes in the sink were awful... They had to be washed (it was getting to where health service might need to come in...) Laundry needed to be folded and put away, unless we were going to wear that pair of underpants a third time (kidding...) The lawn needed to be mowed (don't worry I did not do this one... Hoping for the neighborhood boys to come by again soon...). Wow... He does so much of the labor I have a hard time doing. As I am lying here with my stim cranked and considering stealing one of Husband's new good stuff, I am so thankful he works so hard to keep our house running when I can't. 

And then I also get to play the care giver role of "please stop walking up the stairs with laundry in your hand while you have a bum knee" and "you have to elevate it!" And "please let me get your stuff for bedtime under the sink for you, don't do it yourself!" I now know how frustrating it is when your "patient" tries to do things they really shouldn't do. I am pretty sure that even after 2 days, Husband also understands how frustrating it is to NOT be able to do things you want to do and how frustrating it is to sit on the couch all day.

View from the couch...

We have both been given in the last two days a big eye opener into the other's world. Husband is hating side effects of medicines (familiar to me) and I am about to duct tape his butt to the couch (I know he has been there with me!).

 I am so thankful for our teamwork we have and how we support each other so much on a regular basis. For couples dealing with chronic pain, divorce is a common occurrence. Chronic pain is a huge strain on a marriage. And while many people tell us what an amazing couple we are, it is not all roses and rainbows in the way chronic pain affects our marriage. We have times where it is super hard for us. Husband is super supportive of my needs with assistance on things like grocery shopping and cleaning the house. But I know it gets to be hard on him, just like it has been for me this weekend. But we try hard to keep communicating and laugh together... And sometimes cry together too.

This was one of the verses at our wedding that our pastor gave his wedding homily on.

A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken. (Ecclesiastes 4:12 NLT)

I am super thankful that even when the times are hard, we got each others backs so we can conquer. I am even more thankful for the presence of God in our marriage... Our triple braided cord will not be easily broken! And, we also have so much support from family and friends. So really, we almost have a quadrupole cord! (But I won't let all our friends and family into that bedroom where I threw all the clean laundry).

Husband's diagnosis is a little scary. He will have MRIs next week and some follow up appointments. Surgery is still a possibility depending on the bone chip and where it came from. But in the orthopedic doctor's office, they took the knee from this

Back to this

 They drained 120cc of blood from the knee. It helped ease the pain and he is on the mend. 

Look ma, no cane!

I am 99% sure this will not be the last time I have to be a care giver for Husband. I know there will probably be more times we get to reverse roles and completely appreciate what the other person goes through on a daily basis. But I am super thankful that we have each other's back and we have a triple cord, no matter what comes our way!