Think Zebras

 February 28 (or February 29 in a leap year) is Rare Disease Day. It began in 2008, and this year more than 100 countries are participating in this day set aside to raise awareness for those diagnosed with a rare disease. In the United States, a disease that affects fewer than 200,000 people is considered a rare disease. There are estimated to be between 7,000 - 10,000 known rare diseases, only a few of which have any available treatment. More than 30 million people in the US, and 300 million worldwide are living with a rare disease.

It costs more than $300 million on average to bring a drug to market. The government helps produce what are called "orphan drugs," which are medications for rare diseases that would not be profitable for companies to make due to limited number of patients who would need them. More research and support are needed, and that is why it is important to raise awareness for rare diseases. 

This year, I thought I'd share a little about my story (again). I can't speak for everyone who is living with a rare disease, but one of the most common things I see in this community is how long it takes to get a diagnosis. The average time for a rare disease patient to receive an accurate diagnosis is more than 7 years! There is a saying in medicine that "when you hear hooves, you should think of horses, not zebras." This is supposed to remind doctors that most often when you have a set of particular symptoms, it is most likely caused by something common (horses) and not dig through medical books for some rare diagnosis (a zebra). They should consider and eliminate the most likely diagnoses first. The zebra is the symbol for Rare Disease Day. We are the exception to that rule.

Rare diseases aren't all that rare when you consider that 1 in 10 Americans is living with a rare diagnosis. Doctors frequently overlook a rare cause for patients' symptoms. I had an experience shared by many in the rare disease community. When my x-rays did not confirm my doctor's theory that I had a herniated disc (which is the most common reason for leg weakness with numbness), he told me that I should see a psychiatrist. When the results weren't what he expected, he blamed my mental health rather than seek other answers. 

Going through years of doctor appointments and health struggles before finding an answer is exhausting. Friends and family that started off helping with things disappear one by one as the months and years pass with no answers. Some people doubt you, and you often start to doubt yourself. For others, life progresses and you can't keep up. It can be isolating and depressing to feel unwell and have doctors dismiss you. You learn quickly to do medical research and become an advocate for yourself, but also have to balance going to a new doctor "too prepared." Doctors who see you walk in with a stack of records and list of previously seen specialists are more likely to see you as a difficult patient. 

Many times, rare disease patients have more than one diagnosis, with overlapping symptoms, and that clouds the picture further. We quickly discover that there is no magic bullet that will fix everything. Most rare diseases do not have a cure, and while symptoms can be managed sometimes, the treatment often comes with side effects and at a hefty expense. Having a rare disease and/or disability is expensive. Travel to specialists, new medications, testing, treatment, and mobility equipment can bankrupt a person. Sadly, if you are lower income, or have no/poor health insurance coverage, you may not even have access to many of the doctors or treatments that might help.

My rare disease is called CIDP (Chronic Inflammatory Demyelinating Polyradiculopathy). It is an autoimmune disease. That means my immune system sees my nerves as something harmful, and mounts a defense, thinking it is protecting me from a foreign invader, but instead it destroys the coating on my nerves. The available treatment options have not helped me, and they consider it to be "treatment resistant" at this point. There really isn't anything else they can do but let the disease run its course, monitor me, and give me medications to treat the symptoms. 

I first had symptoms of CIDP in 2004. I received the wrong diagnosis in 2009, and got the correct diagnosis in 2013, which was confirmed at Mayo in 2018 (which is when we found out the 2009 diagnosis was wrong).  You can read more about that devastating news here and here. This disease causes numbness, weakness, nerve pain and balance issues among other things, and has been slowly taking away my ability to walk.

I won't repeat my whole history here, but if you haven't read the beginning of my story yet, you can do so here. In 1998, I went from being healthy and active to fairly unwell, which also took a while to diagnose. They named it many things before deciding on calling it Undifferentiated Spondyloarthropathy, which is a long way of saying I have an autoimmune arthritis that mostly effects my spine, hips and shoulders, and is of unknown origin. This disease has slowly worn away my spine, causing many herniated discs, bone spurs, loss of motion, and pain...SO MUCH PAIN. 

The dual diagnosis is a lot to deal with, but also why Rare Disease Day is important to me. I hope for new treatment options. I would like to raise awareness so you can help someone you may know that is going through something similar. I have lost the physical ability to do many things I loved. I have had to cancel many plans, miss out on activities and events, and have also lost friends. If you take anything away from this post about Rare Disease Day, I hope you can better understand how to support a friend or family member with a rare disease.

• Be ready and available to LISTEN! Don't try to tell them you know exactly what they are going through because you had a headache last week, or broke your ankle when you were a child and had to use a wheelchair for a week. The older I get, the more fully convinced I am that we can never fully know what someone else is going through, because we are all so very different. 
• Along those same lines, as much as you want to, please don't offer medical advice or try to fix the problem. I can't even tell you how many times someone has told me about a vitamin or medication that I should try because it helped their Aunt Betty with knee pain. Seriously, it is unlikely that you can offer your friend information that they or their doctors are not already aware of. Offering unsolicited medical advice says to your friend that you know more about their rare disease and medical history than they do (trust me, you don't). 
• ASK how you can help! It's great if you love doing laundry or mowing the lawn, but instead of offering to do what you like doing, ask them what would be the most helpful for them. Maybe laundry isn't a struggle for them, but getting out to the grocery store is. Don't force your help on them either, but gently remind them of your willingness. When they need you and are ready to accept help, they will call upon you.
• Try to include your friend in things. Again, just ask! Maybe holding the event at their home would be easier for them, or offering them a ride, being willing to leave early if they aren't feeling well. Don't push, but be aware that there are many factors that can make us feel isolated, and many can be overcome with a little willingness and creative thinking.
• Don't assume because someone looks fine or is smiling, that everything is okay. This is true in situations other than rare diseases! We are great at hiding our pain, but sometimes having a friend who will ask and listen, is just what we need 💜 It can often seem like we talk too much about our illness and pain, and yet it envelops every aspect of our lives and we need to feel free to discuss it with those closest to us. I don't talk about it to whine or complain, but simply because it can be so overwhelming.
• Be flexible! Be willing to change plans, or as we like to say "adapt, improvise and overcome." It is hard to know how you will feel a week from Tuesday, and therefore we sometimes avoid making plans rather than canceling. I truly appreciate friends who say "text me that morning and let me know if you feel up to meeting, or we will pick another day." I feel loved and cared for, and makes me feel less guilty knowing that I haven't let them down.

Hopefully there is some helpful information here. Have a great Rare Disease Day today!

Additional information about rare diseases here and here.

#zebrastrong 

Until Nest Time~

Shari

When Did I Quit?

 I can't really tell you the day or the hour, or even the week, but at some point I feel like I gave up. What does giving up mean you might ask? Well, for me it was cloaked in my thinking that I was just accepting reality.

I have always been a fighter. I had a friend tell me once that I'm the kind of person that walks right up to a challenge, and never backs down, but finds a way through it and overcomes. I am not too sure that that's true anymore. My disability has been a long, slow journey. As more and more of my work, hobbies and pastimes were stripped away, something changed in my mind that convinced me I couldn't do it anymore, and thus I shouldn't bother to try. In all reality, many things have gotten much harder, but they are still possible. We have taken more of an "adapt, improvise, and overcome" approach in the sense of solving issues as they arise, but mostly I have just given up a lot of things that I put in the "too hard to do anymore" category.

I don't feel sad about this, again, it just seems like it's my reality. I really am okay being somewhat of a hermit. I've always been on more of the shy, introverted side of things, and spending a lot of hours alone usually doesn't bother me too much. However, when I look back a few years ago and compare that life to now, I feel like I've changed so much sometimes I hardly recognize myself. I used to love to just go browse thrift stores or antique shops, and we were always out doing things on the weekend. Museums, kayaking, and lots of hiking were among our weekly outings. Now, when I see that I have a couple of physical therapy appointments in the same week, I feel slightly overwhelmed that I have to leave home multiple times (especially by myself). All of it just seems too difficult, so it has gotten easier to just stay home. The thing is, I'm actually very content at home. This fact actually leads to making the situation worse though. If I was the kind of person who missed getting out and doing things, or missed large groups of people, I think that I would force myself to do more even if it's harder than it once was.

Years ago, my blood pressure was creeping up and I was having issues with blood sugar. I decided I had had enough. Literally overnight I changed the way I eat and exercised. Within a few months I had dropped 40 lbs and no longer needed to have any medication for those issues. I maintained that for about 3 years, but gradually as things got more difficult for me physically, I started to make little excuses and exceptions. A quick bite of food here or there that wasn't on my diet, skipping exercise because I was in too much pain, and things like that started to become more normal. Now here I am back at the weight that I started at in 2012. I've been on blood pressure medication for more than a year, and I've started to have problems with blood sugar regulation again.

In my mind, I still feel like that young, strong, fighter, and yet in reality have become something different. I'm not sure this is all bad. I can easily make excuses for how I'm taking care of myself, but the truth is I would prefer to be that younger healthier woman. Days like today when the pain isn't too bad, I wake up and face a new day with determination that I'm going to change everything on a dime again. Lately though, I make that proclamation a few times a week, and by the end of each day I feel defeated as the reality sets in. My lack of mobility and increased pain slowly strip away my intestinal fortitude. I used to think all I had to do was pull myself up by my bootstraps and muscle through. Another friend of mine reminds me the bootstraps are nowhere mentioned in the Bible! I no longer feel that that is actually true, not everything can be overcome. Grit and determination aren't always enough.

Above all I do believe that the battle for all of this begins in our minds. What we believe about ourselves and the world around us really does impact what we think and feel. The Bible, which is God's word, is my ultimate source of strength and truth. It's where I go on good days to be reminded of God's loving plan, and it's the thing I cling to on bad days to remind me of God's providential care. 

I'm very thankful that God has helped me to be content in my circumstances, to learn to trust him more, and deepen my faith in the midst of all my struggles and suffering. God may not really care if I weigh 160 or 120 lb, but I know he absolutely does care for me! Because I'm an all or nothing kind of gal, it's hard for me to just try to choose one small thing and focus on accomplishing that. When I wake up in the morning and think about changing something in my life, the conversation in my head looks more like this:

"Okay. Today I will stop eating or drinking anything that's not healthy, eat less overall, exercise at least an hour every day, and get out and do more activities with family and friends. Also, be home in time to make dinner."

That all sounds super easy, right!? Obviously, when I can't accomplish that to 100% perfection, it tends to discourage me and makes me want to give up. My biggest struggle these last few years is realizing that everything is not so black and white. I'm learning to embrace the gray. Today I'm going to focus on one small thing I can do that will be healthier for me, and work to do that. Tomorrow when I wake up, I'll remind myself not to look back at my failures, but to stay present today and focus on one more small thing I can do. God's mercy is new every morning!

I'm reminded of the song from Santa Claus Is Coming To Town where the lyrics say:

Put one foot in front of the other,
and soon you'll be walking across the floor.
Put one foot in front of the other,
and soon you'll be walking out the door.

Walking across the floor

Do you set goals for yourself? Do you set yourself up to fail like I do? What one small thing can you do today to make a bigger difference down the road? Share with us in the comments!

Until Next Time

~Shari

OUCH!

All of us 1980's kids, probably remember when that little alien came on the scene. No, not ALF, the other one. You know who I mean! The 1982 film, E. T. the Extra Terrestrial, was a heart warming story of friendship. Of course, thinking of friendship with an alien sounds, well, alien. If you haven't seen it, go now and watch. I'll wait.

Aliens were about the only thing that didn't happen this past year (although the US military has acknowledged some unidentified flying objects, and leaked video footage, so who knows!) The past year and a half have been difficult, to say the least. A global pandemic lead to unprecedented shutdowns. Illness, death, lost jobs and businesses, isolation, riots and looting, and some natural disasters as well, lead to day after day of seemingly bad and painful news. No one remained untouched by these recent events. We have all suffered in one way or another.

Today in Illinois, we officially "reopen" without any pandemic restrictions, for the first time since March 2020. There is reason to be excited about getting back to normal, and yet some of us might not be ready to throw away our masks and pretend like none of this happened. I have shared in previous posts about the need for love, grace and patience as we deal with each other. This has all been painful and traumatic, more so for some than others. 

You all probably know my love for all things medical. I have my "armchair MD" degree, mostly due to my own health issues, and my love of research. Like most other relevant medical topics in my life, I kept up with the research on COVID-19 as it became available. You are well aware of the need to find reliable sources for all of our news. Ignorance and untruth abounds on the internet! We ALL had to weigh the facts, consider our own health and family situation, and make difficult choices these past 14+ months. 

If you have followed any part of my health journey, you might know that we have been to Mayo several times, and are set to return again this September. I am currently on a "drug holiday" (as the doctor called it), and not taking any treatment. I am currently going through a particularly difficult, painful, downhill path in my disease process the last couple of months that has me reevaluating my treatment options. I hurt everywhere! Widespread joint and muscle pain, as well as worsening neurological symptoms make me think it may be time to consider if more medication is necessary.

In the past, I have had to weigh a number of factors in deciding which treatment to try (or not). My disease is rare, and so the research is sparse, ongoing, and thus hard to decipher at times.  It is not easy to make a choice to take a chemotherapy drug that comes with lots of health risks, when the scientific studies were only able to try it on a handful of patients. Many of you have probably made decisions that seem to have no "right' answer and it can be heart-wrenching, or perhaps have disastrous consequences. This new coronavirus pandemic gave us all a taste of what it is like to have a disease no one knows much about. Studies are needed, but take time, and leave a lot of unanswered questions as we make decisions about our health.

It is normal for us to have our emotions and feelings sway our decisions. It is hard sometimes to trust the facts. The most recent research of COVID-19 and the mRNA vaccines seem to suggest that they are very effective at preventing serious illness and death, even with the current variants.  (I recommend CIDRAP for trustworthy research, and a great podcast too) After 14 months of caution, worry, masks, bad news reports, shutdowns and everything else, it can be very difficult to set aside the difficult emotions we have had, and trust the science. Some will be totally comfortable jumping in the deep end of the pool. Others have never gotten out of the pool. Still others are slathered in sunscreen, and just starting to dip a toe in the shallow wading pool. We need to extend grace to each other as we wade back into life, at our own pace. Encouragement, support and love are called for here, not judgment and ridicule!

God made us emotional beings. We should feel things deeply, however we cannot trust our feelings to be the basis of our decision making. Feelings may tell us it is unsafe to drive after watching hours of car crashes, and reviewing accident data. Science and engineering data may help us to trust the braking system in our cars. Those two things are seemingly at odds with each other. Most of us will trust the car to work as we expected, and yet many might still be anxious while driving or being a passenger in a vehicle. We have to move past emotion in many situations. The Bible tells us that "For we walk by faith, not by sight." (2 Corinthians 5:7).

That is not to say that we shove our emotions down deep and ignore them, but we also can't trust our emotions completely. I feel lots of pain, and that makes me feel sad. I feel like I can't do things I want to do, and that makes me feel like I can't contribute in a meaningful way. I could keep going with the "I feel" sentences, but what I know is that God is faithful. God is sovereign "and we know that for those who love God all things work together for good, for those who are called according to his purpose." (Romans 8:28) He is trustworthy, my feelings are not. I have to function in the space where I feel all the feelings, but can still trust Him enough to step off the diving board in faith, without drowning in my emotions.

I am struggling right along with all of you. It has been a ROUGH year in so many ways! Pray that we all learn to trust God more fully, love each other more in humility, and forgive others as we have been forgiven. Pray for those who have not yet trusted in Christ alone for salvation. Pray we all suffer well, in a manner worthy of our calling, and in a manner that brings glory to God!

Until Next Time

~Shari

Shattered Comfort

What can I say about the start of 2020 that you haven't already been made aware? Global pandemic, protests, riots, and SO much political bickering it has, quite frankly, become depressing to be on social media at all. Who could have ever predicted that asking to wear a mask would become a political divide? I am not a theologian, politician, or historian. I am a suburban, white, Christian (reformed), woman with a disability, who feels a bit like giving up. What that means exactly, I haven't quite figured out, but what was once my comfortable little corner of the world, now seems disquieted.

Racism has been the topic most recently dividing my social media newsfeed into an "us" and "them." There seems to be no end to those divisive words thrown about on any given topic. I have just been shook from my comfortable suburban life these past few months, which is a good thing. I have said before that my prayer, my desire, is that God might show me areas in my life where my thinking has been wrong. That I might never get too "comfortable" thinking I have it all figured out. I pray He would reveal to me those hard to see personal sins and my lack of concern and compassion. Give wisdom in areas of ignorance, and grace to change wrong beliefs. Lately, I have prayed for forgiveness in turning a blind eye. So easy to get wrapped up in ourselves, our family, our problems, and forget there are others.

I am sure we all have our favorite spot to sit and read, or that well-worn seat where we wrap ourselves in a blanket and binge watch our favorite show. We have our routines. Each family settles into their "normal" busy lives. We get very comfortable there, don't we? There is a sense in which we think that other people's lives look much the same....or maybe we don't think of their lives at all.

I have noticed the defensive posture many of us take on social media (a posture we may not be so bold in maintaining if we were face to face). Someone calls mask-wearers sheep, or non-mask-wearers are heartless people who don't care if they infect others. It is hard not to put up your shield when approached in such a strong way. We may feel the posts on racism don't include us. Our comfortable live is shaken thinking about some of these issues. And it should be!

If our first thought on any issue is to indignantly reply, "Not me!" instead of taking a close and honest look at our lives and hearts, we have chosen a prideful and dangerous response. I have learned so much about the virus, studied medical journals, read peer-reviewed studies, learned about COVID-19 as the doctors around the world are learning about it. I have also read YOUR posts, both sides of the debate, and then I have tried to form my own (hopefully wise) opinions. BUT I hold that all loosely! So much is still unknown about this new virus. I cannot dogmatically hold firm to what I believed 2 months ago, because new information is coming in that changes that. I must be willing to learn and change also.

The same is true of the recent talks of racism and the Black Lives Matter movement. I have learned more in the last few weeks about black history, reading personal stories from people of color, and have more fully realized that all of our experiences are NOT the same. We do not all have the comfortable suburban life. We do not all have the same struggles or opportunities. I do not think all white people are racist. I do think all people of all colors need to be willing to learn and listen. If someone accuses you of being a racist, I understand the tendency to assume the defensive posture. No one thinks of themselves as a bigot, but we do all have biases. We all have difference experiences/backgrounds which shape our worldview. We must begin to understand that our lives, in fact, do NOT all look the same on a day to day basis.

This hasn't been on the news much if at all, but there have definitely been other forms of discrimination made clear to me these past few months as well. Ageism and Ableism.

Ageism: "Ageism is the stereotyping and discrimination of individuals or groups on the basis of their age; ageism can take many forms, including prejudicial attitudes, discriminatory practices or institutional policies that perpetuate stereotypical beliefs." (source World Health Organization)

Ableism: "Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that people require 'fixing' and defines people by their disability. Like racist and sexism, ableism classifies entire groups of people as 'less than,' and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities."

(source accessliving.org)

I am saddened to see how hard hit nursing homes and group homes for individuals with disabilities have been hit. To be clear, these are not the expensive, private homes that you may see in the upper-middle class neighborhoods. These are the state and federally funded homes that Medicare covers. Places like my grandmother lived. I remember the horrible smell, and the patients left sitting alone in the hallway. Others wandering around half dressed, and seemingly uncared for. We only went to visit her a few times. Our society doesn't place a whole lot of value on the "old" or the "infirmed". If you can't contribute or produce, you don't have much value. That may seem harsh, maybe you feel that impulse to assume a defensive stance. You may not feel that way about your own mother, but that doesn't mean you aren't ageist, much the same as having a black friend doesn't mean you aren't racist. 

People with disabilities are an often overlooked and neglected group as well. Homes like I mentioned above are frequently places of abuse. The National Institutes of Health estimates 1 in 10 are abused in settings like this. Are you aware of this? Recently a man who was living in a care home like this was allowed to die of COVID without treatment, because doctors deemed his quality of life not worth saving.

I have personally experienced ableism (and sexism, but that is a story for a different day!). The ableist says things like: "Such a shame, you're too young to be stuck in that chair" or "I would want to kill myself if I had to deal with what you are going through." (real life examples)

Sometimes it is blatantly obvious, other times it is more subtle. Maybe just a superior attitude of "I can do it better/easier" or condescending "you poor thing." People talk to me like I am 3 years old sometimes, "Look at you, doing that all by yourself." It is more than just words, but again, a systemic problem. Society as a whole does not give any thought to people who are not the same as them. In this case, not the color of my skin, but the ability of my body. Could be missing limbs, or paralysis. Might be a developmental issue or genetic disease that cause you to move, act, speak differently or not at all. Maybe you are deaf or hard of hearing. The world around us is built by and for people who look and move a certain way....."normal."

I have not counted, but conservatively half of the places I go have accessibility issues. Even places that have been made by laws to add an accessible bathroom, block the hallway with chairs or boxes. The worst is all the hospitals and doctors that have step-on garbage cans in the accessible bathroom (I have mentioned this issue before). Recently I had a test done at a local hospital and the bathroom in the room had the handicapped accessible plaque. Unfortunately, it was an old surgical room turned into the testing site, and the sink only had step-on (foot controlled) water. I can stand, but am not stable. Just trying to balance on one foot to step on something to wash my hands is very difficult, and puts me at risk for falling. Others may not have use of their legs, and would be unable to clean up after using the bathroom. I came out after my ordeal, and mentioned to the tech about the foot pedals not being accessible, and they should fix the bathroom to be ADA compliant or removed their sign. Her response is an example of ableism. 

She replied, "It has a grab bar, so that makes it accessible."

Me, "No, much more is needed for a bathroom to be accessible. If I have no use of my legs, how do I wash my hands?"

She thought for a minute and said, "Maybe the person who hung the sign didn't think about someone having legs that don't work, do you think that's it?"

me *blink* *blink* "Yeah, I think that's it."

This seems like a battle I can't win. Maybe you think that ignorance doesn't mean you are ableist. Maybe you are right. Maybe you are wrong. My main point about all of this is that we don't need to attend a white nationalist rally to be racist, or knock little old ladies down in the street to ageist. We need to open our eyes to see the differences around us (color/race, age, sex, ability, etc.), acknowledge and honor those differences. Recognize that when you say "all lives matter" it doesn't excuse ignorance of the situation. All people's lives do matter. Absolutely! And because they do, they are worth our time to get to know, to learn about their struggles, to love, and to treat like a fellow human being. Stop using terms like "us" and "them" and start seeing all of us and "we."

So far, 2020 has been the perfect storm in a sense. Isolation during the shutdown. Perhaps fear of the virus, or for loss of liberty. The nation watched George Floyd being killed, and the desire for justice gave way to protests and riots. We all want to be heard and seen. Take some time to learn about people that are different from you, if all our lives matter.

It is so easy to stay in our comfortable corners of the world, and pay little attention to things that don't impact us. Lately I feel shaken, broken even. There is SO much injustice, so much passing the blame, so little self-reflection. 

So, I pray. 

I pray for myself. May my eyes continued to be open, and may God show me how to contribute in a meaningful way. May He continue to guard my tongue, helping me to respond in love to people who show me ableist attitudes. I pray He helps me to truly see and hear the people created in His image; to love them as He loved me.

I pray for all of you also. May each of you set down your shield, and be willing to read things from the other person's perspective. May we all compare these things to God's word, being willing to grow, change, and repent in areas where needed. May we seek to reconcile and love those across the divide. 

I pray for the US, that we might not just go back to our comfortable pre-pandemic lives, and forget all that 2020 has revealed to us. May God be glorified in our lives, and throughout the world!

Until Next Time~
Shari

Who I've Become

If you have met me in the last few years, you might be surprised to learn that I used to be somewhat adventurous. While I was never one to be a thrill seeker, I did frequently hop in the car at the last minute for a road trip, or impromptu outing with the kids. As a child, my mom would drive me into Chicago to the Planetarium (it was free back then) just to buy an ice cream sandwich from the vending machine (She swore that brand was better, and not available locally). I think her crazy ideas like this rubbed off on me!

In fact, if I think back over the years, even though I have always been introverted, there was rarely a day I didn't get out of the house: nature walks, shopping, museums, movies, or just yard work. Slowly over time, as our kids grew up and moved out, and my health declined, getting out of the house seemed less attractive, and more problematic.

Chad and I were talking about this a couple of days ago, and it has been on my mind ever since. I am very content in my day to day life, but my world has definitely shrunk. I routinely go to church on Sunday, and consider it a victory if I have nowhere to go until church the following Sunday. I still love the outdoors, shopping (especially at thrift stores), and even road trips, BUT (and it is a big but), things have just become much more challenging.

I can no longer just wake up and decide to be spontaneous, heading out for the day to a local museum or park like we used to do. For starters, on the rare occasion that I feel well enough to head out for the day, there has to be much more planning. Medications, medical devices, mobility equipment, etc. are part of my daily life. I have to think through the outing to decide what needs may arise. How long will we be gone? How far would I have to walk, or is it wheelchair accessible? Is there van accessible parking? (especially if I am alone, because I frequently get stuck unable to deploy the ramp either because there are not enough handicapped spots, or someone has parked in the access aisle/striped lines) The list is LONG.

Sadly even when we plan the best we can, trips frequently end with an serious increase in pain. Pain rises throughout the day normally, but increased movement and lengthy activities will increase it more rapidly. Sometimes, I do a cost-benefit analysis and decide the trip just isn't worth the pain.

There is usually some stress and anxiety involved in going somewhere unfamiliar also. Many trips end up disappointing when we discover we can't get around by wheelchair, or there are no bathrooms I can use. Even stores with wheelchair accessible entrances often have narrow or blocked aisles, racks that are too close together and inaccessible bathrooms. Besides being more physically difficult to navigate, it is mentally draining for me as well. I struggle with feeling unwelcome and like I am constantly in other people's way (some of this is my own insecurity, but also because people will literally say it out loud).

When I do have a "good day" it just seems easier to stay home, where it is comfy and Chad has made it all very accessible to me. I can keep myself occupied with crafts, jigsaw puzzles, puppy cuddles, reading and many other favorite activities within my home. Easier for sure, and it makes me happy 😊

Sometimes though, I do miss going out. Frankly, I don't often visit a clothing store to feel the fabrics, browse clearance racks, and try things on just for fun anymore. Having the endurance to do all of that is rare at this point. (even getting my leg brace off and on is quite the workout. The struggle is real, people!) To some degree, my low pain level days seem wasted by going out and struggling to do things that used to be easy and enjoyable....so I just stay home, and use that energy on something that truly is enjoyable.

A little over 10 years ago, when I was healing from the life changing surgery on my left leg, I would have never dreamed that I would become a hermit! I have read about disabilities being isolating, and families with special needs children feeling alone, but didn't really understand why, until now.

I am very thankful that God has given me a contented heart. The introversion I once saw as a huge hindrance, I now see as a true blessing. I don't need a lot of activities or people to have a pleasant day. Seeing a dear friend, talking with family, or keeping busy at home are all real treats. I do know that there are plenty of people in the disability/special needs community who DO need more human interaction. Extroverts are not immune to medical issues, and while I am okay being more isolated than I once was, some people are struggling with loneliness and depression.

Honestly, this whole issue continues to be a struggle in my marriage. Chad is way more social and adventurous than I am anyways. I don't want him to be miserable never going anywhere, and he doesn't want to make me go somewhere knowing I will be in more pain. We run through ideas, evaluate how I feel, imagine how draining it will be and decide if it is worth it or not. I do more with him and for him than I would ever do on my own. Some days I push myself over that hurdle, get out and enjoy the day with my husband. Sometimes it isn't even as hard as I imagined it would be!

This unexpected change in my life has been a slow, sanctifying process. I have learned to be truly content, needing little fanfare to keep me entertained. I appreciate the little things in life more. I appreciate friends who are willing to drive to my house for a visit. Maybe you are able to visit a neighbor or friends who is going through something right now and could use an encouraging word, listening ear, or a push to get out of the house. (Don't push too hard, just offer!)

I am thankful that God has given scientific and technological knowledge to many individuals who bring us new innovations (like the internet), and all the good things that come from that to help us daily. There has never been an easier time to stay home and shop from the comfort of your couch! I am beyond grateful for a Savior, who is ever by my side, good day or bad. Maybe you could bring His word to someone who needs it today!

Until Next Time~
Shari

The Heavy Weight of Scales

Once upon a time, I lived an active lifestyle: biking, running, walking, hiking, rock climbing, swimming, kayaking, the list goes on and on. I did all of our yard work, and helped shovel snow. I did all the shopping, and errands, and was always on the move. I have always tried to eat fairly healthy, not really denying myself any guilty pleasures, but always being careful not to over do it. Both of my parents were overweight all of their adult life, and genetically I am very similar. I have always had to be aware of what I eat, how much I eat, and how many calories I burn, and even then, I could still gain a couple pounds very easily.

The older we get, our metabolisms naturally slow, and weight loss does becomes more difficult. Genetics play a huge role in metabolism, and it is difficult (but not impossible) to overcome that genetic predisposition.

As you know, I am not as active as I once was. I have trouble walking even short distances. Chronic pain and arthritis keep me from doing much with my upper body also, so I do a lot more sitting than I once did. I have read many studies showing that "sitting is the new smoking", and if that is the case, I have a 3 pack a day habit!

Lack of real exercise (combined with my genetics and poor food choices) are causing me some issues.....again. I have been overweight before following my surgery in 2009. I held steady at 122 lbs for a few years, following a strict paleo diet. It was hard, very hard at times, especially when we were away from home, but I can be very disciplined when I put my mind to it!

Last year, my cardiologist told me to start adding some whole grains to my diet for heart health. I had already been slipping a little, because eating a strict paleo diet requires fresh ingredients, lots of washing and chopping and cooking. I was feeling worse, living with daily intense pain. I was having more difficulties doing my shopping, and stopped going to so many stores for fresh foods every few days. Cooking complicated recipes became too much on some days. The changes were small at first, and I rationalized that "it wouldn't hurt just this once" to eat something unhealthy. It wasn't long before "adding whole grains to my diet" just became "let's have a bowl of ice cream after dinner".

I convinced myself that I would work harder tomorrow. I rationalized that I was still eating more healthy food than bad, and it wasn't necessary to deprive myself of yummy treats. Now, 30 lbs later, I am nearing that weight I was back in 2012 when I started the paleo journey. My blood pressure is elevated again, and I am on medication for that. My blood sugar is out of whack frequently, and I am having digestive troubles again.

Anyone who has struggled with food, understands the mental games we play with ourselves. We promise ourselves it will be "just a little bit" or "just this once". The diet will start (over again) on Monday. A few pounds heavier, and we think we will cut back for a few days, or increase activity, and the weight will leave again....but we keep on doing the things we hate and having "just a little bit more." I have gained 30 lbs. The scale doesn't lie.

We play similar mental games to convince ourselves we are "good people." Sure, we have done some bad things (not too bad), said something we shouldn't have (not as bad as what other people say though), or thought things that aren't kind (but didn't actually act upon them). We add up all our good deeds on one side of the scale, and hope it outweighs the pile of bad things on the other side. The trouble is, that the scale doesn't lie, even if we try to convince ourselves.

The truth is that every thought, word, and deed is tainted with sin. The scale shows the truth, and there is no hiding from it when we step on. Hiding my head in the sand, or rationalizing does not change the fact: I am gaining too much weight, and it is not healthy. I am also a sinner, whose sins far outweigh the "good deeds" I have tried to do. Thankfully, Christ has come to take the weight of our sins upon Himself, for all who believe and repent. So, when God weighs our deeds, He will only see Jesus Christ, and His works where ours should be.

He is also here to offer grace, wisdom, and peace to me as I struggle to find a way to live as healthy as I can. Diet and exercise advice are all over the map! Having a disability makes exercising much more difficult, and I am still trying to find activities I can safely do without falling, or causing myself too much pain. I am trying to take one day at a time, trying to dig deep and find the discipline to eat right again, but I am also trying to extend grace to myself. I am so thankful to know that in all of my failings, Christ's forgiveness and mercy are never beyond reach.

Until Next Time~
Shari

Don't Spill the Beans

My mother and I used to play the game "Don't Spill the Beans" when I was a kid. Each player took turns carefully adding a bean to the top of the pot, trying to keep it balanced so it would not tip over and spill the beans all over the table.

Original game photo. We just bought a bag of kidney beans to use.

This game seems like the perfect image for how the last few weeks have felt. In general, I am not an emotional person. I probably shed a few tears once per quarter, and have a good cry once a year or so. Most days my logical side tells me tears won't help, so don't waste energy crying, but then I go through a rough patch. Besides my regular chronic pain and neurological issues, which start my pot off with a handful of beans already, things tend to mount quickly.

Side effects from new high blood pressure medicine - add another bean.
Frustration and disappointment from a body that can't do what I used to do, or what I would really like to do - another bean.
Frequent headaches and migraines - bean.
Cancelled plans - bean.
Financial burden of disability, more pain than normal, weight gain, lack of quality sleep - bean, bean, bean, bean.

It isn't long before I feel my emotions begin to tip to one side, and despite my best efforts to level them out, things tip too far, and streams tears down my face, like the pot dumping all the beans all over the table. I am currently feeling like my pot is about to tip again.

If you are familiar with the game, as soon as the pot tips, emptying all the beans, it swings back and forth slightly a couple of times before it levels out and stops moving.  Just like a good, cleansing cry can swing our emotions, but afterwards there is a calm. All the stress and trials seems to have been washed away, and God graciously rights His vessel once more. He steadies us, having eased our burdens, comforts us and gently reminds us of the joy of our salvation. Christ, who bore the awful load of our sins, takes all our beans (our hardships) upon Himself, gives us a lighter load to carry. May we all be an empty vessel, willing to spill all of our beans into Jesus' loving arms, and look to Him alone for grace, strength and comfort in difficult periods of life.

One day there will be no more pain, or tears, but for now I pray that I will be an empty vessel, willing to be filled and used by God, for His glory. I am beyond grateful for the gift of eternal life, and the hope that I have found In Him. He provides exactly what I need, when I need it.

I thought I would finish with the words of the Heidelberg Catechism question #1:

          Q. What is your only comfort in life and death?

          A. That I am not my own, but belong with body and soul, 
               both in life and in death, to my faithful Savior Jesus Christ. 
               He has fully paid for all my sins with his precious blood,
               and has set me free from all the power of the devil. 
               He also preserves me in such a way that without the will 
               of my heavenly Father not a hair can fall from my head; 
               indeed, all things must work together for my salvation. 
               Therefore, by his Holy Spirit he also assures me of eternal life 
               and makes me heartily willing and ready from now on to live for him.

What "beans" are piling up on your pot? Look to Christ today, and give them all over to Him, before they spill all over the place!

Until Next Time~
Shari

Opening A Can of Worms

I have hesitated writing about this particular subject, but now that I am a couple years out from the event, and with my current observations, I decided it was time. An alternative title might be "Grace and Education" since that is my hope....to educate, but also to extend grace to myself and others as we learn.

I have frequently pointed out issues to my friends that I have experienced as my disability has progressed. One example would be my disdain of the step-on garbage cans in handicapped bathrooms. HOW is someone in a wheelchair (or with no balance, no legs, or whatever) supposed to step on the foot pedal and open the garbage can to toss out the paper towels??? There are dozens of things like this that I have figured out as I go. I put these items in the category of "you don't know until you know". Nobody has a reason to think through all the scenarios that could arise, nor would we be able to think of ALL the possible differences, before we plan, design, or implement an idea. But, for the one person for whom the problem exists, it is a trouble spot. I run into these dilemmas many times a day.

I have tried to remember to extend grace to others, because I do know people want to help. People have generally responded well when I point out problem areas (although most of them don't change when I visit the location again). I am not a dogmatic disability activist, but I would like to lovingly help others to think through things they don't know until they know.

One of the things I have noticed as my disability has become more visible, is the look of pity that I get. I am sure most people don't even know they are doing it, but it is obvious when you're on the receiving end. Recently, I have ventured out alone to some stores, now that I have a van and am a little more independent. Times like these are when I notice the pity look the most. People rush over to hold doors, clear aisles, and the like, all while their face (and sometimes even their mouths) say "awww, poor thing." I am stubbornly independent, but I am also in pain, and starting to have trouble with my arm and hand strength so, in many ways, I am just thankful someone opened the door, or cleared the path, so I didn't have to struggle so much. However, there are many (perhaps even the majority) of people with a disability who are strong, capable, and independent. We do not need or want your pity, even when we could use your help. If I can turn this post into a learning experience, then the first lesson is that you should ask someone if they would like help. You wouldn't rush over to a able-bodied person, and grab the door out of their hand to open it the rest of the way, so don't do it to a person with a disability.

Basically, just treat all people the same. Easy peasy! Okay, not really. Everything we do is tainted by sin. Even our best efforts to help others are mixed with wrong motives. Many times I get the "pity look" as someone opens the door for me, and it is quickly followed by this look (or sometimes an explanation to a child) that says "I am so awesome for helping the poor, crippled woman." I try not to be oversensitive, or read things into a situation that aren't there. The truth is my response is tainted by that same sin nature. This all reminds me of an article I posted on FB a few years ago about "volun-tourism". We travel to a third world country, hug some orphans, hand out water and candy, build a home, and go on safari. It was pointing out our tendency to use a missions trip as a photo op. We go back home a week later with great photos and feeling good about ourselves for "helping those poor people". I have done this too, but we quickly go right back to our American life of excess, and the other people we just thought we "helped" have not had any actual change in circumstances.

(More useful tips and disability etiquette links are listed below. In addition, I added some info about the trend in volun-tourism, since they explain the issue much better than I do. Please take a few minutes and browse some of the highlights!)

This segue brings me to the story I haven't talked about. A few years ago, my husband and I attended a camp aimed at families who have a member with special needs. In a lot of ways, we probably went there with the volun-tourism mentality. We were going to go serve the families struggling with the pressures of dealing with special needs. We learned a lot about disability etiquette there for the first time. As a person with a disability, I was overwhelmed seeing families embraced, loved, and served by many volunteers. I wrote about my experience, and my growing pains, as God revealed ugly truths in my own heart. It was painful, and wonderful, all at the same time. This was also a week of learning to extend grace. If you know me, you know my middle name is Organization. Dealing with a dis-ability is not as hard for me as dealing with dis-organization. That old post shows how I struggled to find a spot to serve, or to help without making it about me. By the end of that week, I felt I had found my niche, and for the first time felt that I could be useful despite my disability. And then....

A year later we signed up to serve again, but we would end up never going back. Turns out that even an organization built on serving families with disability has trouble doing the one thing they talk about a lot: co-laboring. They are absolutely wonderful at making families feel loved and welcomed. Many of these families think this camp is the best week of the year, and we need more places like this! The trouble is that there is still a disconnect when it comes to the able-bodied people helping dis-abled people (or differently-abled, if you prefer).

Like any week of service or missions, we show up expecting to help and bless the less fortunate. Even if we don't want to think or talk about it, it shows in our faces, actions, words. When we went to sign back up to serve again at this camp, there were issues, many that I will not discuss publicly, but the one I will talk about is the fact that they asked me to return as a camper, not a volunteer. It was brought up that we could come as a family and be served, and relax for the week.

While this was super heartbreaking for me, because it was the one place I actually felt useful, but I don't bring this story up for that reason. I want to talk more about our tendency as humans to help others to feel good about ourselves, instead of helping people who need/want our help. It is not wrong to open a door for someone, but honestly, do you do that for everyone, or deep down do you think the person with a disability needs you to do it? Basically, I am asking you to truthfully evaluate if you treat people the same. This requires some soul searching and brutal honesty with yourself. I would venture to say that we all do this very thing. Whether it is physical, or intellectual, there are areas in our lives that we feel superior, even if that is not a thing we would say to someone. We have those moments of thinking we could do something faster, or figure something out better, than someone else.

What it boils down to actually, is the fact that we all need to be more aware of our motives, our sin, and remember that we all have strengths and weaknesses, but none of us wants someone else rushing over to "fix" our problem. We can come together, find a place where we can work shoulder to shoulder, utilizing each other's God-given strengths, and do so to the glory of God.

Missions and service projects are fantastic, and I am not trying to say to not do them. My point is more about really learning to co-labor, whether it is in the disabled community, or a village in Africa. Ask how or what you can do to help, and roll up your sleeves, side-by-side with the others, and work together. I want you to serve, but I mostly want you to understand that a week at a camp may not be the best way. Only you can prayerfully decide how and where to spend your time and gifts, but be intentional and educate yourselves before you do.

I am thinking of the old saying:

Give a man a fish, and you feed him for a day. Teach a man to fish, and you feed him for a lifetime.

In order to truly do that though, you have to be willing to talk and listen. Find the areas in an individual's life where they could use your giftings, and show up. Opening a door for me at Kohl's might be just fine, but maybe what I really need is help with shopping. A meal might be great, but I may have a refrigerator full of food, and a dozen loads of dirty laundry. This type of service and love involves more. More knowledge, more love, more dying to your own interests, and looking more to the interest of others. It is not about feeling good about yourself, but about laying your life down in service to another. This all takes lots of grace, love, and forgiveness. It also takes time to educate yourselves. (Please check out some of the resources listed below)

I will finish with these words from Philippians 2:1-8:

"So if there is any encouragement in Christ, any comfort from love, any participation in the Spirit, any affection and sympathy, complete my joy by being of the same mind, having the same love, being in full accord and of one mind. Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but emptied himself, by taking the form of a servant, being born in the likeness of men.   And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross."

Until Next Time~
Shari


Resources:

Disability-

1. "Interacting With People With Disabilities"
2.  Etiquette and Language Tips
3. "Introduction to Disability Etiquette" 

Volun-tourism-

1. "The Reality of Voluntourism"
2. "The Business of Voluntourism"
3. "As Voluntourism Explodes In Popularity, Who Is It Helping The Most?"

(Please note this links are to outside resources, and all the information/views are not mine, but are provided here to educate you more on this topics.)

Faith at 49

Yesterday was my 49th birthday, but I don't feel a day over 80 though! 😁 I figured I would celebrate with a blog post since it has been a while.

In a lot of ways, my days have been pretty status quo, but there have been some new developments if I think a little harder. I have been continuing on my infusions of IVIg every other week. Besides being bored for 5 hours in the infusion center, there isn't much to report here. Thankfully the side effects have been minimal, but I am not convinced it is helping at all.

Subjectively I think I have been getting worse. My legs don't seem to want to follow my brain's commands, and seem to have more trouble walking. For sure the numbness, tingling and weakness in my hands and arms has been progressing. Due to this, I have had more issues navigating in my manual wheelchair, and yet I am using it more and more. We have an appointment on the 10th of June at Shirley Ryan Abilities Lab again to begin the process of getting a power wheelchair. Of course, with a power wheelchair, an accessible van is a necessity. (I should probably do a blog post on the expensive nature of a disability, since I think my husband works to pay for all my needs) I am excited though that the new power chair, and the van will make me more independent. I do miss shopping at an actual store (while online shopping is a blessing when you can't go somewhere, it just isn't the same, especially for clothing!)

About two weeks ago, I had an episode of nerve pain in both legs, that grew so bad that I had to rethink what I thought a 10/10 on the pain scale was (even after 2 kids and 20 kidney stones). This was hands down the worst pain I have ever felt, and it landed me in the ER. Thank God for strong drugs! They basically knocked me out for a couple hours, and I woke up feeling better. I was very worried that the pain would come back, or would be here to stay, and knew that there was no way I could handle that.

Even as that thought entered my mind, I wondered "what exactly do I mean?" Many of you have heard a story of someone who has gone through something horrible, or seemingly impossible, and thought "I could never do that!" But what happens when that same terrible accident or illness strikes you? In that moment, you might think along the same lines. I know I did lying in the ER bed: I can't do this, I cannot live in this much pain.  I understand feeling that way, but in reality we have no choice. It is not as simple as rewinding the clock to a time before the accident happened, or telling the doctor you decided not have the disease he just diagnosed you with.

It is in these moments that the rubber meets the road. Does all the talk about my faith mean anything? Do I really believe what I preach? My answer is a resounding YES! However, that does not mean that I never struggle or doubt. The pain is very real. There are many days I feel the reality of the fact that I am not strong enough to handle all of this, but it is also in those moments that God reminds me of His strength.

I know I have said this before, but the saying "God never gives you more than you can handle" is not in the Bible. What is true is that God never gives you more than HE can handle. He grows us in our faith, strengthens us, and allows us to persevere. It is only my lack of trust, my lack of faith, that in the midst of excruciating pain, I cry out to God and say "I can't!" Those words should be immediately be followed by, "but I know You can!"

This is not easy. Life is not easy (or even fair, for that matter), but every day is a blessing. Every day is a choice to dwell on all the things we can't do, or can't handle, or to dwell on the goodness and faithfulness of God. We thank Him, the giver and sustainer of life, for every second of every day that we are given to enjoy His creation, our families, our jobs, our friends or pets, or anything and everything you have in your life that you get to enjoy during our brief time here under the sun. Every breath is a blessing, even if it is a painful one. Be encouraged today, that even though you can't, He can!

Until Next Time~
Shari

Prayer requests:

• Please continue to pray for clear test results in September when we return to Mayo Clinic, so we can make decisions regarding my treatment going forward. 
• My liver enzymes have been elevated for the past couple months, please pray they return to normal.
• Pray for me to trust in God to provide all we need, whether it is about the cost of the van and everything I need, or the pain I am experiencing. I worry (more than I should), but know I should trust God, and am thankful He is teaching me to trust Him more. He has always provided, and I don't expect Him to stop now. I am thankful that Chad doesn't stress over this the way I do! We make a good team <3 
• Pray for the grant I applied for to help (hopefully) with some of the conversion costs of the van. That organization has my case on their agenda for their June meeting.

Dark Circles

Have you ever had that feeling like you are about to pass out? Dark circles envelop your vision, blackness closing in. This seems like a decent analogy of my life currently. Darkness seems overwhelming at times, closing in from every side. I feel like I might "pass out" as I lose the light in my vision. The last several years have been difficult (that might be putting it mildly), but this past year has definitely hit an all time low. My health has continued to decline and the accompanying chronic pain has been overwhelming. Medical treatments and side effects are exhausting. I have spent a LOT of time sitting with a heating pad or ice pack, and zoning out in front of a screen. I haven't done much art, or cleaning, or even leaving the house. I have missed a lot of Sunday morning worship services. Due to my accessibility needs, we switched churches in December of 2017, which combined with my recent spotty attendance record, has made it difficult for me to feel connected. I have lost friends, been unable to do things I love, and gained weight. Any one of these things would be enough to deal with, but all together, I feel alone and surround with darkness.

Disability and suffering are often isolating. When I do go out, I put on a smile, and try not to turn every conversation into a gripe fest of how bad I feel. So instead, I try to love others and ask about their lives. Listening is one of the first things I have learned this past year. As I have spent more and more time alone, stuck in the house, and wishing for someone to talk to, I have learned how valuable a listening ear is! In today's electronic world, it is a rarity to find someone that stops, makes eye contact, and actually pays attention. I am SO very thankful for those friends I have that are willing to do this, and hope I can do the same for others.

I have also learned some things (of the not so pleasant variety) about myself. I have put too much worth on friendships, letting hurt creep in when those relationships fell apart. I am reminded of my own words about managing my expectations of others. In truth, I should be seeking Christ. Wanting a deeper fellowship with Him. Going to Him in prayer, and with my concerns, worries, and pain. Not that friends aren't deeply valued! A good friend is a rare jewel. They can rebuke and encourage us. They help carry our burdens. But we must also remember they are sinful humans, just like us. Christ alone is the "friend that sticks closer than a brother" (Proverbs 18:24), and to Him alone should we look to truly fulfill that need for acceptance and love.

Besides feeling super crummy, gaining back a lot of the weight I lost back in 2013-2014 has added to my frustration and encroaching depression. This issue has also got me thinking about my beliefs on weight, self image, and food. Yes, I do feel worse when my clothes don't fit. My blood pressure is high again, so there is a real health concern, but if we get down to the brass tacks, I want to be thin to "look good." Our culture pushes this agenda, and I have bought in hook, line, and sinker!

I have been going through the book Idols of the Heart by Elyse Fitzpatrick again, and there are plenty of idols coming out of my little "idol making factory" as John Calvin describes our hearts. One more lesson to be learned in all of this darkness.

We want what we want. What we shouldn't have for reasons perhaps unknown to us. We desire that which we think will make us happy: friends, thin bodies, perfect health, no pain, etc. The list goes on and on seemingly forever. It is very difficult, if not impossible, to bear up under the weight of all these things. The dark circle surround us, and just like my analogy about the feeling of passing out, just about the time we think our entire vision is going to go black, and we will most definitely pass out, a tiny light in the center of our vision starts to shines through. Slowly, the center light grows, and chases back the black circle that had threatened to overtake us.

In those moments, I am reminded of 1 Corinthians 4:8-9

"We are afflicted in every way, but not crushed; 

perplexed, but not driven to despair; 

persecuted, but not forsaken; 

struck down, but not destroyed"

This is where my hope is found, in Christ, the Light of the World. Just when I think I can't take any more, as I lie alone begging for mercy, wondering if the pain will ever end, asking Him if He is listening, if He even cares, that small dot of light emerges in the distance. As I begin to focus on it, it grows larger and brighter. That is not because God finally showed up, or decided to intervene, but simply because I wasn't focused on the light. I began to focus on the overwhelming blackness. I started to believe He doesn't care, or isn't listening. I begin to believe it will never end. I start to focus on my symptoms and circumstances, and lose sight of my Savior, and His truth. But then, I hear God's still small voice prompting me to remember what is true. God tells us many places in His Word that He will not leave us or forsake us. That is the truth. God never left me, his Light was there all along, I just chose to focus on the darkness. I missed His tender mercy in a card from a faithful friend, because I was thinking instead of the friends I lost. I failed to see the simple joy God brought to my days by way of a little 12-lb dog, and looked only to my feelings of loneliness.

I am not trying to minimize the struggle. I am suffering. I am miserable. This is all very hard. I know you hurt too. I am simply trying to remind you (and myself) to stop focusing on the black circles closing in around us, and focus on the light instead. Keep your eyes fixed upon Christ! (Hebrews 12:2). Be grateful for the faithful friend, or that tiny rescue dog! That is how we give thanks to God in all circumstances, like Paul tells us in 1 Thessalonians 5:18. We start to change our focus to God's blessings, and stop making the pain and disappointment the center of our world. We aren't thankful for the pain and suffering, but we can be thankful to God, even on the worst of days, for His loving care. 

I am thankful that God has been gently revealing the sin in my heart, and for His forgiveness. I am thankful that I am learning to trust Him more, even on those days when I cry out like the child's father did in Mark 9, "Lord I believe, help my unbelief!" Remember to give thanks for His Son, the Savior of our souls, who also knew the pain of suffering and isolation. The One who suffered all of that in our place. 

We used to joke that the light at the end of the tunnel was a train, and some days it still feels like that! I pray we can all look down that tunnel of blackness, and see a small light in the distance, and then draw near to that Light! Keep searching and clinging to the One who preserves our souls, and I know the darkness will fade, even if the suffering continues. That is the truth for all who are in Christ Jesus! Will you choose to cling to the Light, or continue in the darkness?

Until Next Time~

Shari

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

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. 

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.