Saturday, September 15, 2018

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 or we 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

Thursday, September 13, 2018

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

Saturday, September 1, 2018

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

Saturday, August 11, 2018

I Was Only Trying To Help

We all know the feeling we have when a dear friend, or beloved family member is hurting, sick, depressed, or grieving. We feel helpless. We want to do something to help. In some ways, we need to do somethings tangible to feel useful, and let them know we love them. I understand this need. I am a "fixer" of problems. A trait perhaps most often considered a "man thing" to do. Over the years, I have learned to become a better listener, without listing out the steps to fix the problem (as I see it). I still find this difficult at times, as my mind works in a logical and sequential manner. I enjoy solving puzzles. When I hear a hurting friend say they are struggling, or they have a problem, I immediately think "well, let's fix the problem, then you can be happier, and in turn that makes me feel good to be useful."

I also have had moments when I am sharing my struggles with someone, and they pounce on me with a list things I can do to fix the problem. Over the years, people have bought me vitamins and supplements (or try to sell their brand to me). Given me medical or cook books. Sent me a mile high stack of articles and emails regarding treatment ideas or research. I am also learning something being on the other side of the "fixer." I am learning grace. To be very honest, my first response is irritation at times. I question why people would think I have not considered any of the options they are suggesting. I am a researcher by nature, and have read books, articles, blog posts, and many medical journals looking for answers over the years. I do eat a diet I feel is healthy for me. Perhaps the worst is my response to my several friends who sell the products they believe in, and have worked for them, when I think "No I don't want to buy product x, or I would have bought it." I feel guilty when people spend money to buy books and supplements, when I know that I will likely toss them. I have learned that people need to feel useful and they show love by trying to help fix the problem, just like I am guilty of doing.

One of the problems with being a "fixer" is that it is a way to make ourselves feel better. We feel the need to help, so we do, but in a way we think might be helpful instead of finding out what would actually be helpful to the individual suffering. I have come to understand that feeling of helplessness. I know that I have so many wonderful friends who care, and truly want to help me. They hurt because I hurt. I have to be gracious in my response to their offer of help, and hopefully they will be gracious in return if I seem to not take their advice. (Let me just take a minute here to ask forgiveness to those I have turned away with an unkind word. I am sorry. I am learning to think before I speak, but I am a sinner. I love you all, and would not want to hurt you, and I know you have a concern for me at the root of your offer.)

You all know how I love an analogy, although sometimes I have trouble thinking of a truly effective image, but I am going to try! I am sure you have been in a grocery store when you realize you are in the way of another shopper. You swerve to be considerate, thinking you will give preference to the other person, and patiently wait. But then, just as you swerve, so does the other shopper! You are both trying to do the "right" thing by helping the other person, but in the process you both have gotten in each other's way again! I have had this happen numerous times, and occasionally we have both then corrected our swerves and again ended up in the way. This situation is uncomfortable, and frequently ends in a nervous smile and one person saying "you go ahead, I won't move."

There is absolutely nothing wrong with wanting to help someone else, but perhaps we should take a minute to listen and identify how we can really be of use. For me, I would prefer someone just say "how can I help?" If I need a ride, or someone to grab a prescription, or mail a package for me, I will ask those whom have offered to help in the ways I need. Some people may not have a tangible way that they need help, maybe a kind word or card, and a listening ear without judgment, is the best "fix" you can give them. Prayer is always a wonderful gift! When we serve others the way they want to be served, instead of in the way we want to serve them, we avoid the nervous smile. We walk together, instead of one of us stepping aside, and telling the other one to go ahead and pass by.

Hopefully, you understand that I am not upset with anyone, I am just trying to say that we could all do a better job of helping the hurting in a way they want/need to be helped, instead of a way that we think will solve the problem. The truth is there are not many things I haven't tried (at least for a time) and the only thing remotely useful thus far has been dietary changes. I lost weight, lowered my cholesterol and blood pressure, but I also continued to worsen with the neurological disease, so clearly it is not a cure-all. I am thankful that your aunt's neighbor, or your cousin's best friend tried a certain diet/vitamin/doctor and got much better. I really am glad to hear that, but I also know that all our bodies are very different, our diagnoses are not the same, and a "one size fits all" approach does not work. When people ask about my dietary changes I tell them, but I do say "it worked for me, but I doubt it will work for everyone." This may be a whole different post, but just the fact they call it "practicing medicine" gives us a glimpse into the difficulty of how different people's bodies respond differently to the same health issue. This is why you can have many people with a herniated disc, and have them all have different outcomes. One gets better, or maybe never has any pain. One needs some therapy, a steroid injection and takes a few months to feel better. Another may need surgery or may be permanently disabled. Doctors tell me half the population would have a herniated disc show up on an MRI, but most never know it because they feel no pain! I am sure you can begin to see the difficulties with treating every person with the same plan!

At the end of the day, hopefully we can all learn to love less selfishly, pray more diligently, and extend grace more consistently, growing more and more each day to reflect Jesus in our lives. I love you all, and am so thankful for your prayers! 💜

Until Next Time~
Shari

Thursday, August 9, 2018

Lost In Space

I thought I would try to write a short post, since I have been very wordy recently! I mentioned the sensory and motor nerve issues that were discovered on my tests in yesterday's post. I have been thinking about the doctor explaining this all to us.

Tests showed some motor nerve involvement. This would cause weakness, and muscle atrophy, which is why I fatigue quickly, and can't walk as far as I used to. There is also some demyelination. Myelin is the protective covering over your nerves. It is like the outside plastic sheath on electrical wires. When nerves show signs of demyelination it means that the protective coating is being destroyed by the disease process. Just like a short in an electrical wire, without the coating on the nerves, the signals slow or stop and cannot pass correctly along the nerve, getting lost along the way.

My tests also show sensory nerve damage. In fact, my testing shows that this part is the worst part of my particular case. The doctor said it was one of the worst sensory exams he has done. Sensory nerves help you feel hot or cold. They allow you to feel rough and smooth surfaces. They enable you to walk, and feel the ground under your feet. My legs are numb from my toes to my hips. So much so that I have burned myself in the shower without realizing it. One of the biggest problems with not having much feeling in your limbs, is the difficulty your brain has trying to communicate properly with them. I cannot always tell where my feet are in space. Proprioception is the brain's ability to have a sense of the position of all our body parts as we move. It usually lets us know how hard we are pushing down, or weight bearing.

Because of all of this, I am a bit "lost in space." I start to take a step forward, and instead I lose my balance and end up side-stepping to try to stop from falling (danger Will Robinson!). I end up going in a direction that I did not intend to go, and THAT sums up our life right now. It probably seems like a lot of your lives too. We think we are headed in one direction (at work or home, perhaps medically or relationally), when we realize we have had to do a couple quick side steps to stop from falling. I went to Mayo thinking that we would get answers about our future (learn more about my prognosis), and came home questioning our past.

Proverbs 16:9 reminds us that "The heart of man plans his way, but the Lord establishes his steps." We may feel like we are stumbling around. It may seem like we are falling and side-stepping instead of heading in the direction we should be going, but God has ordained our steps. We may not feel like we are on a straight path. Our idea of straight may be different from the Lord's. God's ways are higher than ours. His purposes mightier. We are to trust in the Lord with all our heart, and not lean on our understanding, but in all our ways acknowledge Him. If we do, He promises us to make our paths straight. (Proverbs 3:5-6)

I have said many, many times that this is not a path I would have ever chosen. I don't think anyone in their right mind would sign up for this, but I believe with all my heart, that I am walking this road for God's glory and my good. I am thankful for His loving discipline, and the Spirit's leading and guiding. I am grateful that He has begun teaching me patience, love and compassion. I am praying that God would graciously open your eyes to His truth, open your heart to His Son, and give you faith to trust that He is making our crooked paths straight.

Until Next Time~
Shari

Wednesday, August 8, 2018

Holding Pattern

I am currently sitting in a quiet corner at Mayo Clinic, which is a hard thing to find around here, looking out the windows, watching the world go by. We just finished a late lunch, after I had been fasting for a test all day, and I am now enjoying my first cup of coffee for the day at 2 pm. Since my last post, it has been a whirlwind of tests and appointments. I still have a bit of a spinal headache and low back pain from yesterday's spinal tap, mixed with this mornings test that was uncomfortable, then the fasting before another hour and a half in an MRI tube (third time in an MRI machine since last Thursday), all tipped the scales this morning for the inevitable meltdown. This trip has been exhausting, both physically and emotionally, and stressful, both mentally and financially. I finally needed to go into a bathroom and have a good cry.

First, can I just say how truly thankful I am for all the texts, and emails, and FB messages/comments sending encouragement and letting me know you are praying. It has been a real blessing to know that others are thinking of me and praying for me, even when I have been at the end of my rope, too tired to offer up a prayer of my own beyond crying, "Lord, help me." So thank you all!

Next, I just want to say, if it has ever been suggested that you should come to Mayo Clinic for any medical issue you are dealing with, DO IT! I was not completely sold on the idea. I worried it would just be an expensive waste of time. While it hasn't been cheap, it was a great decision to come. They run this place with more precision than the military, more compassion and friendliness than any local hospital, and seem eager to learn from any mistakes. We only had one issue, which lead to the 3rd trip to the MRI tube, and it got the Neurology, Radiology, and Patient Experience teams, along with the chairs of both departments, to communicate what the issue was, why it went wrong, how to fix it. Then they informed us of the loop hole they found in a new computer system that caused the miscommunication. They are working to fix it, and plan to follow up with us in a couple weeks to let us know what solution was implemented to make sure it doesn't happen again. WOW!

Also, if you stop moving anywhere for more than a brief minute, a volunteer or passing staff member is sure to inquire if you are lost and need directions. It really has been remarkable! Like 5-star hotel service, but in a medical setting. There is NO gap in medical records communication either. Their portal (or app) gives you complete access to tests results, reports, doctor notes, and everything in between, in a very short time. I had some of the spinal tap lab results available in my portal before I even was allowed to get up off the table!

Now, I will give you the easy version of where we stand right now (I will finish up today with the detailed medical version in the next section). If you read the last post, you know we got some difficult news to process. While I have undergone several more tests, and officially had my consultation in the office with Dr Dyck, we haven't found out much more in terms of definitive diagnosis, as they are awaiting the pathology slides from Northwestern Hospital. That can take a few weeks, so we are in a holding pattern. They really want to see those slides, and possibly do their own biopsy, before officially confirming the diagnosis. After those last few steps, they will give me the prognosis for my case, since this disease can vary in degree of severeness.

So, CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) has a close sibling. They are in the same family, share many of the same physical traits, and mannerisms, but like any family member, there are many differences in personality traits. That is the best way I can describe the alternative diagnosis of CISP (Chronic Inflammatory Sensory Polyradiculopathy) They are so similar, they are hard for us to even tell apart, like identical twins. The doctors, like the parents of twins, seem to clearly see the differences, while we see identical ones. In the end, it doesn't really matter, since they are treated in the same manner, and the doctor says I either have a non-pure form of CISP or a non-pure form of CIDP, the biopsy should push them over the edge towards one or the other. Which leads to our return visit in the middle of September, when it is likely they will do a biopsy, and we will go home with the final verdict, and treatment plan. In the meantime, I appreciate your continued prayers for strength and wisdom.

As for the rheumatological and chronic pain issues, the rheumatologist does agree that I am in remission from whatever diagnosis I had back in 1998. I have been off all of those meds since around 2009, and was feeling pretty good for a couple years. I do have constant neck and back pain, and testing shows worsening of the degenerative disc disease. She did say that it was a early onset, since this much degeneration is something normally seen in older patients. Our daughter was diagnosed with it at age 17. There is a genetic predisposition in some people, making them more prone to an early onset form, and it can become debilitating. Additionally, the change in my walking gait since the "tumor" surgery is contributing to my pain and worsening degeneration. I was referred to a specialist, but that appointment will also have to wait for our return trip. I just wanna go home (and we will soon do just that!). My general neurologist, Dr Boes (pronounced "base") added me to the end of his day at 5:30. He will have the MRI reports and scans that I had this morning by then, and be able to give us the final game plan, and answer remaining questions. We will be sleeping in our own bed tonight, although it may be after midnight by the time we get there! I am still excited to be heading home! Yay!

For all the medical nerds like me who are reading, I can give you a few more details:  😃

  • MRI's all showed my peripheral nerves and nerve roots are inflamed, particularly at L2-3, L3-4. This inflammation was seen on the original 2009 MRI at Northwestern which the report labeled as a likely nerve sheath tumor, but also said they could not rule out an inflammatory neuropathy (oh, how I wish I knew this then). The inflammation has returned to the remaining sections of the left femoral nerve, and worsened in other nerves. As a very cool side note, the portal/Mayo app includes the actual images of the MRI scans! That is way better than asking for a disc to take home and look at!
  • The EMG was abnormal, indicating both the demyelination of nerves in upper and lower extremities, and confirming that this is not purely sensory, but also a motor neuropathy. That being said, CISP normally has a mostly sensory presentation, and normal EMGs, where CIDP presents with mostly motor involvement, less sensory, but EMGs that look like mine.
  • Spinal tap showed elevated protein and albumin but lower IgG levels. Elevated protein is common in CIDP, but usually at a very elevated rate above 200. Mine is 69, normal is 0-35. Labs were mostly normal, which is good since a lot of them were for other diagnoses like: POEMS syndrome, pernicious anemia, and neoplastic disease. A few of the numbers were slightly off, but nothing of consequence.
  • Somatosensory Evoked Potential and Quantitative Sensory testing were both abnormal, but apparently in an expected way for either CIDP or CISP. They again show upper extremity involvement.
  • Still awaiting brain MRI results, and did not have the neuro-ophthalmologist appointment yet. This is more precautionary than anything, I think, because of the mild optic neuritis I had a couple months ago. We will have this last MRI result at our 5:30 appointment today, and the eye exam at the follow up trip in September. 
That about sums it up for now! I really am sorry for all the super long posts lately. You people rock! I know many of you have read every word, and I am impressed with your persistence.

We will be coming back to Mayo. We are fairly certain there will not be multiple return trips, but then again I came here with hotel reservations in NY, thinking we would only be here a few days (those darn expectations). Of course, I also thought I had a tumor AND a neurological disorder, and am leaving here with doctors 99% convinced that I have had a neurological disease since 2004 when symptoms first started, and no tumor ever, so things do change. I am leaving here with no spoons, and a lot of emotions to work through, but I am leaving here encouraged by family and friends. I am thankful for a husband who loves me, and is the strongest person I know. He masterfully pushes my wheelchair through a crowd, while pulling a suitcase, and does it (mostly) without complaint.  I am so thankful for my loving Savior who strengthens me when I am at my weakest, who uses me in waiting rooms, and who lovingly and graciously keeps a smile on my face through the dark of valleys. Praise be to God!

Until Next Time~
Shari


P.S. I forgot to mention that I got to take a Tesla for a spin. The T3 Tesla MRI machine, to be exact :) Supposedly stronger magnets for better imaging. 

Saturday, August 4, 2018

Hard to Put Into Words

Chad and I are relaxing near Minneapolis for the weekend before returning to Mayo on Monday for more appointments and tests. Since I last posted, we met with a rheumatologist (who was wonderful). She ordered some more labs and another MRI. She thinks the latest diagnosis for all my spine and neck pain, may be accurate as an inflammatory arthritis, but it could also be an early onset (possibly genetic) form of osteoarthritis/degenerative disc disease. If it is indeed an inflammatory arthritis, they will get me in to a specialist who only treats patients with that diagnosis. If it turns out to be the other degenerative disc disease, which is not an autoimmune disease, then pain management is my only treatment to try and maintain a good quality of life.

We arrived to the "waitlist checker" line at 6:30 am on Friday to try and get the EMG done sooner (this was needed before we could try to get the other specialist appointment date sooner). We were 4th in line. The first "checker" as they are called, arrived at 5:30 am!! The first checker was called back for testing at 8 am, and providentially, another one had to leave. That left just one other person ahead of me, so I was feeling hopeful. The next checker was called around 10 am, and I knew that I was next. I prayed for another opening before the end of the day. Just before 10:30 am, my name was called, and I was headed back for the test. It didn't go quite as expected, keep reading for all the details. Sorry, but this post will be a long one.

While we waited, a couple from western Minnesota sat next to us. We struck up a conversation with them, and thoroughly enjoyed talking to them. We had a lot in common. He worked in the construction industry like Chad does. She has been a special education teaching assistant, for the past 18 years, which is similar to the work our daughter, Katherine, does. During our talk, we both mentioned attending church on Sunday, so I asked where they went to church. We had a great conversation about faith, and the importance of preaching God's Word truthfully and un-apologetically. We also discussed the medical issues that brought us to Mayo. They were going through some similar testing, but sadly it seems the husband may have a rare and deadly form of cancer that affects the nervous system. She explained this to us through tears as he was in doing his test. We were able to pray with her in the waiting room. I love that Christ binds believers together as a family, no matter where we live, or what church we go to, and am thankful we met and could provide comfort to each other for a brief time while waiting.

It has been very interesting to see the melting pot of people from around the world in the waiting areas, but it doesn't end there. I have met doctors from New Zealand, India and Portugal that are visiting Mayo for specialized training, as they shadow some of the experts in their fields of practice. The entire downtown Rochester area (that is Rochester in Minnesota, not in New York haha) is connected with subway tunnels, and bridges, and there are wheelchair ramps and elevators everywhere!  Even the smallest of restaurants has elevators to get you to the seating areas, or bathroom. That part has been wonderful! I can't think of any other place I have been that is like this place. It really is a fully accessible, "mini city" around Mayo Clinic, where you know almost everyone you see is here for medical treatment. The Mayo Clinic blue wheelchairs are being pushed all around the area, and I have seen some very sick people. We are all here for one thing: answers. We all have the same hope to get a diagnosis and a treatment plan to make us better. That provides a connection, that makes everyone a little nicer to each other in elevators and waiting rooms. The staff is also very friendly and compassionate. In Chicago, I frequently have a receptionist with an attitude, or who seems to hate their job or is having a bad day. I haven't had that experience here yet.

OK, so on with my testing story. I am laying on a table, waiting for the doctor to come in to start the EMG. A tall, 50-something, doctor walks in and says hello. He introduces his "shadow" who is the doctor from Portugal (mentioned above). He sits down and starts to type, but then stands up and leaves the room. I sit up to see if I can read what he was typing and I see that he entered his name under the physician heading "Dyck." When he comes back in, he explains he was shocked to see me today. He says he received a phone call the night before from the radiologist who told him that he needs to see my MRI scans. Dr. Dyck continues by saying he is very familiar with my name and case, because he spent the night reviewing my records. He had no clue that I would be a checker, and end up in his testing room the next morning. Oh wait, it gets better!

In 2013, when we had considered Mayo Clinic previously, I had been reading medical journal articles, and saw that a few of the ones that seemed to be most relevant in my case were all written by a Dr. James Dyck from Mayo. I did a lot of sleuthing, and found an email address from him from the medical school here where he does lectures, and I emailed him. So, as it turns out, I was as surprised as him that we ended up in that room together yesterday! Back in 2013, he asked the clinic to offer me an appointment, which they did, but it was like 8 or 9 months out, and we were worried about not starting treatment soon enough. We ended up deciding to not take the appointment, and go with the second opinion doctor at Northwestern, who comes to Chicago one day a month from Mayo. Leading us down the past 5 years pathway of trial and error treatment plans that lead me here to this room on this day. Again, I say providentially, as there are no such things as luck and coincidence.

I asked if he was Dr. James Dyck, and mentioned to him that I had written to him, and of course he gets thousands of requests, so he doesn't remember me, but I did learn that his father (same name) is the oldest doctor on staff at Mayo, now in his 90's! Dr. Dyck Sr. is the doctor that first identified, and named the disease CIDP, which has been mentioned before in my case. Dr Dyck Jr. performed the test, and because he was very interested in my case, and with the results he was getting, I had an almost 2 hour long test! He sent the nurse and staff to lunch, and stayed there with me, literally testing every muscle in my body, including my face (that was strange)! He refers to his father as Dr Dyck "The Greater" and himself as "The Lessor" :)

Since this post is already long, and there is a LOT of medical terminology to wade through, I will try to keep this short (hahahaha) and simple. (Friends- if you want a more detailed explanation, feel free to call over the weekend).

Dr Dyck had plenty of bad news.

1. My EMG and MRI were clearly abnormal.

2. He said that the nerve tumor they removed in 2009 should not have been removed, since it was benign and removing it would make me more disabled than leaving it. I have heard this from 2 other doctors.

3. He suspects based on the current testing that I do indeed have CIDP (he is still waiting for other testing, and perhaps a biopsy to definitively diagnosis this, but he seems fairly confident.)

4. Based on everything he has seen in my case, and the fact that he has seen 6 other patients who were wrongly diagnosed with a neurofibroma, but instead truly had CIDP, he suspects that I never had a tumor. He thinks it was CIDP all along. He has requested the pathology slides from that 2009 tumor resection to see them for himself, but again, he thinks he will find that the pathology and diagnosis were wrong.

5. Recent nerve issues in my arm are also likely the beginnings of CIDP in my upper extremities.

There were more tears. Right now, I am not certain of anything, but the implications are staggering. If he is correct, I had a surgeon cut out 7 inches of a large nerve to my left leg to remove inflammation, and not a tumor, leaving me forever disabled (2009). That alone is bad enough, but sadly it doesn't end here. I had a second surgery to try to reconnect the nerves that were cut out in 2010. The first surgery caused my gait issues which have led to a knee replacement (2011), a tarsal tunnel nerve release in my ankle (2012), increased back and neck pain because of the spinal arthritis, as walking has been so much more difficult since 2009. I then developed a neuroma along the original incision, and had to have another surgery to fix that (2013). (For the sake of shortness, I will just say that we had already known the original surgeon did not do things he should of done to aid in my recovery, which very well might have enabled the nerve transfer to keep the muscle functioning, leaving my leg a bit weaker, but not paralyzed).

CIDP is also not the best thing to be diagnosed with, but in some ways the fact that he feels many of the nerve issues I have can be explained by one diagnosis, and not many different diagnoses that are not related (which is what we keep hearing) sounds good to me. What doesn't sound good is thinking through that last paragraph. It is almost too much to think about. It has been a struggle the last 24 hours to stop my mind from pondering the "what ifs" even though I know that is not helpful. There is some sadness, and some anger we are dealing with, but Chad and I are both trying to not let ourselves go there. We can't get trapped in the past. My recent posts have discussed closely monitoring our expectations, and not worrying about tomorrow. Today is the day we need to be present in, and today I am reminding myself to also not live in the past. Imagining what might of been won't change anything but my attitude. It will only create anger and regret and bitterness.

I still have many more appointments, and will likely have to stay longer and/or come back in a few weeks, especially if they do the nerve biopsy. In the meantime, I will try to not look backwards, and not worry about what the ultimate outcome will be. I will try to focus on one day at a time. Praying you all can do the same.

Prayer requests-
1. Monday morning we plan to be in the checker line early again, to try to see the peripheral nerve surgeon instead of waiting until August 23rd. Please pray we are able to get in sooner, even if that means staying an extra day or two now.

2. Tuesday, if you pray for anything, please pray for me on Tuesday! I have a spinal tap scheduled at 7:45 am and a sensory test at 3 pm. I cannot have any pain meds, no muscle relaxers, or CBD oil, nothing, not even Tylenol for 12 hours before the sensory test. I have not gone more than 4 or 5 hours with meds in months because of pain, and it has been worse with the hotel bed, doing tests and sitting in the waiting room. After the spinal tap, I have to lie flat for 2 hours on the exam table to allow the hole to close, which I assume will be uncomfortable by itself.

You are all caught up, and I will continue to update everyone who is interested as we know more. At this point, I am guessing we won't know much else for a couple days. I am thankful for each of you who continue to pray, it means the world to me 💜

Until Next Time~
Shari

If you would like to know more about what CIDP is, you can read more here.