Good Grief

Grief is a part of life. We grieve the loss of a loved one. We can also grieve the loss of what might have been. The loss of hopes and dreams. We all go through times of grief for things like this. Maybe an injury kept you off the baseball team that you thought would be your future. Maybe it is finding out your child will have special needs, and their future goals may be learning to walk or talk, instead of being the CEO of a fortune 500 as you had hoped. We grieve the dissolution of a marriage, or a child who wanders away from the faith. There are likely hundreds (thousands even) of scenarios that cause us to suffer a loss of some kind, and result in us grieving.

Grief can be necessary and even good. Grief is a natural human emotion, and a process that is as natural as living and dying. Grief can also be bad. It can be a state we enter into and never leave. We can linger too long and let sadness, anger, denial, and bitterness rule our hearts. There is a sinfulness in dwelling in grief too long, however, dealing with grief can be helpful as we come to acceptance, embrace the truth, and move passed it. This is not to say that there is not still a hurt, or a void left behind by the loss, because there frequently will be, especially if our loss is that of a cherished significant other.

Reflecting on all my recent news, I realized all the grieving that I have done, and am still doing. When I first had surgery in September 2009, doctors had hoped that they could remove the tumor from the nerve, and I would not have any ill effects. My surgery that day lasted 8 hours. Just moments after waking up enough to realize where I was, or even who I was, my mother blurted out that the doctors had to remove 7 inches of my femoral nerve. They took a portion of nerve from my inner thigh and tried to reroute it to make my thigh continue to work, but doctors weren't hopeful, and it could take up to 12 months to let the nerve heal and see where we end up. I remember bursting into tears as I heard what I considered to be worst case scenario. I also remember Chad (my husband) saying to my mother that they were going to wait a little while to tell me. My mother was never good at keeping secrets :)

After that surgery, it took me weeks to just sit up in bed for more than a minute or two. I had 3 incisions, each 8-12 inches in length. I had been completely disemboweled during surgery to get to the spine and nerve so they could find the tumor and remove it. It was by far the roughest, most painful thing I have ever been though. Those weeks were very sad, and very difficult. There was a lot of grief and even more tears. Gradually I started to feel better, my stubborn attitude kicked in, and I was determined to get better. The doctors weren't sure I would even be able to walk, but I did. Within a few months I walked without any help. First I used a walker, then a cane, then I just walked, although I wore leg brace the first year that kept my left leg locked in a straight position. I even got back to a fairly fast walking pace, and went on regular walks. I hobbled around on a tennis court, hopping on one good leg and playing couples tennis with some friends of ours. I rock climbed, and kayaked, and got a recumbent bike so I could still ride with my family.

I grieved of what might have been, while realizing there were some things I could never do again, no matter how determined I was. During this time, several friends and family members started jogging (something I had tried for years to get a few of them to do). They really enjoyed the runner's high. Running is something I cannot do ever again. It is not physically possible to run, jump, or kick with no quadriceps muscle. So I grieved.

There were more surgeries to try to return function to my leg. Surgery to help my knee pain that happened because my leg didn't work properly. Surgery because the first surgery caused painful scar tissue to form a neuroma (nerve mass). Surgery to fix a pinched nerve in my right leg because of my change in gait. And there was pain, so much pain. Pain from the surgery. Pain from the resulting issues. Pain from my neck and back that had a previous issue, but were now being contorted in an unnatural position as I tried to swing a dead leg forward and walk. There were plenty of things to grieve. Then, a team of doctors and orthotists at RIC (now Shirley Ryan Abilities Lab) that worked to get me a lighter weight leg brace, that bent went I walked. I kept walking. I worked out. I pushed and pushed, and after sitting on the side lines for 2 years, I joined my family and a group of spectacular friends, and did a 10 mile Tough Mudder obstacle course.

This whole process has been a roller coaster. Lots of waiting and seeing how things will turn out. I have had to grieve, let go of things, evaluate the new circumstances and change course. As Chad likes to say, we "adapt, improvise, and overcome." That is exactly what we have done every step of the way. We cry. We brainstorm a new trajectory, and we move forward. We move through the grief, and work hard not to get stuck in it.

Now we have circled back around. Now as I sit here and type, I am grieving the loss of my "tumor". I have been thinking all this time, that in 2004 when symptoms first appeared, it was due to the tumor they found in 2009. For 14 years, I have been dealing with my "tumor" and all it involves. All the ups and downs, the surgeries, the tears and pain. So, when I first felt symptoms in my right leg in 2011, I felt fear. I was scared that the tumor had returned. I was afraid I would lose the use of my right leg that had been doing most of the work since 2009. Then we learned it was something different. A mystery neurological disease that was unrelated to the rare nerve tumor I had. I grieved some more. It seemed that lightening had struck twice. I now had 2 different problems that both had a very rare occurrence rate, which made finding solutions difficult as no one really knew how to help. I grieved the unknown, and gradual loss of feeling and strength in my "good" leg.

Now in 2018, I am grieving the loss of the "tumor" I thought existed. I now have to wrap my brain around the fact that I have had a progressive neurological disease for 14 years. I never had a tumor, or 2 diagnoses, it's just been one all along. I cannot begin to adequately describe all the poking and prodding, the appointments, testing, waiting, the cost of all of this (emotional, physical and financial). Today I have to grieve my past and my future. I have to deal with the reality of my new diagnosis, which can be a difficult disease. It is rare enough that they cannot really give me a specific prognosis timeline, or treatment plan that works for everyone. They know what has helped some other people, and they hope it will work for me.

Eventually, we all need to move on so we don't get stuck, but today I will just grieve. I know I will continue to fight, it's what I do. I don't take bad news lying down, I get up and consider it a challenge to rise above. Unfortunately, with all the above events, my fight doesn't pack the punch it once did. I grieve that too. Today I will grieve. Tomorrow I will adapt, improvise, and overcome.

With God's grace, we will continue to get through this, one day at at time. He will faithfully strengthen us for each day ahead. Graciously, the Lord has kept Chad and I together as a unit, lock step, through all the ups and downs. I couldn't be more grateful to my Savior for His amazing grace! To God alone be the glory!

What are you grieving today? How will you adapt, improvise, and overcome tomorrow?

Until Next Time~
Shari

Loss of Control

I admit it. I am a control freak. I like all of my ducks in a row.....a perfectly straight row, to be exact. If you knew me 10 years ago, you saw this attribute in full bloom! Health issues, age and a bit of wisdom have helped me learn to let go of a few things, but I will always be a planner. So, when things don't go according to my plan, it gets a bit uncomfortable (frustrating perhaps?) and I get irritated.

Our trip to Mayo Clinic didn't go quite like I expected, in large part because Northwestern Medicine "wasn't playing nice" according to my doctor. We requested ALL of my tissue samples about 6 weeks ago. Since I like to stay on top of things, I called to follow up with them 3 weeks later. They said they never received any request. I personally talked with the pathology department at that point, emailed a new request and paid $40 to overnight the samples to Mayo.

I then made sure the package showed up at Mayo, and got to the right doctor. Last week, it was here and in the right doctor. Then, we show up for our appointments today....

Turns out that Northwestern only sent 3 slides, that were already prepared with stain (doctor said like getting cooked meat instead of raw), instead of ALL the pathology as requested. The doctor then contacted Northwestern to get the remaining tissue, and the hospital refused to send MY tissue samples to Mayo Clinic so that they could properly diagnosis and treat me. Yup, that is irritating. 

As it turns out, the medical team here has seen enough to say with a fair amount of certainty that I do have CIDP and I did not ever have a neurofibroma. (Makes me wonder if this is why Northwestern isn't sharing?) Either way, I will begin treatment of low dose, weekly infusions of IVIG, and give it 4 months to start working. Then we will return to Minnesota again in January (yay) and repeat all the testing to see if there is any difference. 

In the meantime, I can assure you, Northwestern will get tired of hearing from me, until they give me ALL of MY tissues samples! (Chad says I am like a dog with a bone, so I won't let go until I get what I need). Mayo did not want to do a nerve root biopsy, unless they absolutely have too. The biopsy itself takes a big enough piece of nerve for testing, and will likely leave me with an additional neurological deficit. They will stay in touch once they get everything, and make their final, definitive decision on things (thought we would have that today, yep very irritating).

For now, I am still learning that ducks like to get out of line, and no matter how hard I try to keep them together, they frequently fail to comply with my desires. All of this makes me remember that my idea of control is all just an illusion anyways. In all honesty, I have absolutely no ability to make anyone else, or any situation work out according to my plan, and I don't want it to. 

I really do appreciate all of God's gentle (and sometimes not so gentle) reminders that His plan is different and better than mine. I can quit being like the little hamster in a wheel going around in circles trying to get somewhere, and rest in Him, knowing He knows exactly what I need, and exactly when I need it.

So, we will be home tomorrow. I am thankful to not be having surgery. I am grateful for friends and family who pray regularly, and send me a ton of messages of encouragement. Hopefully, I will continue to grow and these changes in my plans will bother me less and less as I get older. Lord, help me to be a more patient patient. One day at a time, right?!

Until Next Time~

Shari

Constant Sorrows

Have you ever knocked over a glass of milk? You watched it tip in almost slow motion, as it runs all over the floor, and soaks everything nearby. How did you respond? On a typical day, you may very well feel a mild annoyance, and rush to clean it up.

Now, have you ever had one of those days when your 2 year old is throwing a temper tantrum and while dealing with that, you burned breakfast? Maybe at that exact moment, your 5 year old is yelling your name from another room. You know, the kind of scream that makes your heart sink, and you instinctive realize that they are hurt. At the very second you rush to their aid (now trying to ignore that tantrum of your toddler, and the charcoal remains of your meal) the phone rings. It is suddenly so loud, and you feel you may explode. You are still hurrying to help your child when you bump a glass of milk, knocking it over, and it splashes everywhere. How do you respond in this scenario? Do you feel overwhelmed? Is anger welling up from within? Do you drop to the ground, scoop up the hurt child and just start sobbing because it all seems like too much?

I have been dealing with a lot lately. It seems like every day is the latter of the two scenarios. It isn't just the small glass of spilled milk that makes me want to drop to my knees in prayer and weep. By itself, I can deal with the pain in my neck and back. I can cope with the allergies, or migraines. Normal days make the nerve pain doable. Numbness, or loss of balance and falling, are each things I can accept. We still have some unanswered questions from Mayo. All the waiting and the unknown causes me to ponder various options and outcomes, the "might-bes" and "could-have-beens" often late at night when I am not able to sleep because of pain.

My life isn't special or unique. The majority of us deal with hundreds of small things on a daily basis. We all have to decide how we respond to the overturned glass of milk. We all have moments when we want to just curl into a ball and cry. I just started reading a new devotional book that encourages prayer and the reading of the Psalms. Thousands of years ago, King David felt sorrow over many things too. The Psalms are both a raw expression of emotion, and an encouragement from our Lord at the same time.

Psalm 77 is titled in the ESV as "In the Day of Trouble I Seek the Lord" and begins in verse 1 with:

"I cry aloud to God,

aloud to God, and he will hear me."

It has rained several times recently. The dark and dreary days feels as if they go on forever. They make me feel sad and like not doing anything. On the longest of days, when everything I am dealing with seems to occur at the exact same moment, and I don't think I can go on....I cry aloud to God, and He hears me. In the darkness, and in the pain....I cry aloud to God, and He hears me. On sunny days, when life seems ok, and all I am dealing with is one glass of spilled milk.....I cry aloud to God, and He hears me. 

I want you to know you are not alone, even when you feel like it. On days when you feel like you can't go on, or when the rain just won't stop, God has promised His people that He hears their cries. Our feelings betray us. The devil would like us to believe we cannot go on, and that we are alone. He tries to separate us from right fellowship with God and His people. We cannot trust our feelings and perceptions, but we can trust God's Word.

There is someone else besides you and me that knew this very well, that is Jesus. Isaiah 53:3-5 tells us that:

"He was despised and rejected by men, a man of sorrows and acquainted with grief."

Jesus knows sorrow and grief. He can empathize with whatever we are going through, and will help us to endure it (1 Corinthians 10:13). He knows far greater sorrow than we can ever know. As he prepared to go to the cross, he cried out in prayer to God the Father, and asked that this cup might be taken from him. Yet, Jesus knew he must go forward. He must go to the cross, to his death. Jesus knows the cup cannot be taken from him, and he prays for God's will to be done, and trusts Him fully to accomplish His plans. Jesus took our sins upon himself at the cross, with the result being his separation from God (Matthew 27). In those moments, Jesus knew a far greater pain than we are going through.

Some days it is easy to dismiss all of this by saying, "Yeah, but Jesus is God, of course he could do it. I really can't handle all of this." You are correct, you cannot. Jesus trusted God, and so must we. Will we do so perfectly? No, but we make a choice to trust God, and His Word. We ask him for help, and cry aloud to Him. We can know He will hear us, even when our minds tell us He will never listen. The truth is, we frequently have to deal with more than we can handle, but never more than God can handle. If we will turn to Him in faith and repentance, God is faithful and just to forgive us our sins, and He will also extend each of us the grace we need to get through each day.

So, yes, there have been a few tears lately, a few moments of feeling alone. There are times when I hear depression knocking on my door and I am tempted to answer. In those moments, the Psalms have really helped me to grieve, while still praising God. This new book has been a great reminder to pray. I know God hears me. I am never alone.

Until Next Time~

Shari

P.S. If you are interested in the book I mentioned it is Prayers of the Bible: 366 Devotionals to Encourage Your Prayer Life by Gordon Keddie.