Just One Click

 Sometimes it only takes one click to take you back. Most days I don't think about it, but it most definitely impacts my life daily. It shaped who I am, what I do, and how I respond to both people and situations. Just one click on a documentary that was recommended for me got me thinking, and then blogging. Leave No Trace is a documentary about the Boy Scouts and their downfall as stories and documents were brought to light about ten of thousands of boys who were sexually abused in the scouts program and camps. 

In my last post, I talked about being bullied and how that made me an angry teen, but I didn't touch on this other reason for that anger. The specific incident this documentary made me think of happened shortly after my 13th birthday. My mother had always told me stories of my sister being a candy striper at our local hospital, and I really wanted to do it also. I lived about 3 blocks from Mercy Center in Aurora, and walked over to ask questions about it. I learned you had to be 13 to volunteer, and they no longer called them candy stripers. On my 13th birthday, in May 1983, I walked over to Mercy Center again and signed up to be a volunteer. I started off delivering flowers to patients the very next day. I had no friends, so I had a lot of time that summer. Within a few days, I was given more hours and duties. I started working at 6 am each weekday in the admitting office. 

In 1983, the hospital had no computers, so there were piles of paper charts and a huge white board with every bed number in the 5 story building. We had to keep track of each patient coming in and going out. I would get them to complete paperwork, give them a wrist band, assign them a bed, and walk them up to their room. I LOVED this job and must have excelled, because after a couple of weeks, the manager was letting me come in alone on Saturday mornings to check in the rare patient who had a weekend admission. 

In the course of my duties, I had a lot of contact with the nursing station and environmental services to make sure beds were empty and clean. I will spare you the horrid details, but the first week of August that summer, less than 8 weeks from when I started, I was standing in the volunteer coordinator's office being fired. I was sobbing and begging, but she was adamant. As I stood there very upset, weeping and shaking, she explained that a nurse had reported me being in a utility closet with a (30 year old) janitor. She raised her voice to shame me for being young and not understanding that people had jobs to do, and I was an unhelpful distraction. Yes, you may have guessed, I wasn't in that closet looking for supplies. I often wondered how that nurse and supervisor were able to turn a blind eye to something so heinous, but by then, I had already learned how to keep silent and had no self worth.

To be honest, sometimes I wonder if I had a sign on my forehead. I am not joking. I was sexually abused by 5 different adults by the time I was 18. As a teen I was also an easy target for the boys in my age bracket. "Date rape" wasn't a term I heard in the 80's, but I definitely understand what it is and how it happens....at least for me. I was really unable to say "no". I had learned that I didn't have a voice or a choice. I deserved what I got, or at least that is what I thought. I rationalized that if I wouldn't have been there, it wouldn't have happened, so there is no one to blame but myself.

As you might guess, I dealt with depression and anxiety, but I was also angry at the world around me. I really was broken. As broken as a person can be anyways. I had trouble making real friendships and had no sense of "self". My past continues to impact my present, although less than it once did. I still keep people at a distance, have trouble trusting people, and I may never have a truly healthy view of sex, but having a wonderful, patient and understanding husband has absolutely been great medicine!

The two of us dealt with my past when we went to counseling in the mid 1990's, and shortly after that is when we came to Christ. People like to present Christianity as a "cure all". The message that frequently gets communicated either directly or indirectly is, "Trust Jesus and you will be happy and healthy." If you know anything about my life or have read this blog, you will know I am not healthy physically and have struggled with mental health in my life as well, so that clearly isn't a true picture of Christianity.

God's word doesn't promise us health or wealth, at least not the earthly defined type. He does tell us that He is with those who love Him. He comforts us, petitions God the Father on our behalf, gives us His Spirit to guide and strengthen us, and leaves us his Word to give us peace. Christ knows my pain. He shares in our sufferings. He suffered unimaginable pain while hanging on a cross, dying, bearing the weight of my sin. He took my place then, so that I might have life everlasting. On that day, I will know what true health and wealth is. Between now and then, I will keep clinging to my Savior, trusting Him to continue to heal my heart. He is teaching me to love and forgive others as He loves and forgives me. If you haven't trusted Christ, asked Him to forgive you, and placed your faith in him, my friend, please cry out to Him today. He won't take away all the pain instantly, but He will see you through it. 

The early years of my life were marked by trauma, grief and loss. The later years have been marked by grace, healing, and restoration. Praise be to God!


Until Next Time~

Shari

P.S. In case you missed the posts about my childhood and early adulthood.

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

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

What Kind of Friend Will I Be?

After a recent conversation with a dear friend of mine, I was left contemplating friendship. It has been a topic on my mind often the last couple of years, as I wondered what constitutes a good friend. The older I get, the more that definition has shifted for me. Several things have altered my thinking over the years. For starters, being married changed how, when, and why I formed and maintained friendships. It also changed the substance of them, since my husband really is my “best friend”.

As a small child, a friend was simply someone to play with. During grade school, friends were someone to talk to, to sit by in class, to have sleepovers with, and to pass notes to in class. By junior and senior high, the circle of close friends became a smaller, tight-knit group. They knew your secrets, your struggles, your crushes, and your likes and dislikes. You trusted them, sometimes with disastrous results.

I was pregnant by my 20th birthday. Being a wife and mother at such a young age probably shifted things for me quicker than most, but friends became a sounding board for life's struggles and demands. My friends were the people I spent hours a week talking to on the phone (before cell phones). We laughed and cried together. We shared special moments and hurtful situations.

At the age of 28, my husband and I became Christians at the same time my health struggles started. Friends became a source of encouragement on top of the above listed things, but over the past 20 years, as I have grown older and learned more about scripture, my definition of friendship has shifted yet again.

Let's take a look at some things the Bible says about friendship:

• "As God's chosen people.....forgive one another.....as the Lord forgave you." (Col 3:12-14)
• Jesus commands: "Love each other as I have loved you." (John 15:12-15)
• "As iron sharpens iron, so one person sharpens another." (Proverbs 27:17)
• A friend "loves at all times." (Proverbs 17:17)
• Only wound us in ways that are trustworthy. (i.e., tough love; Proverbs 27:6)
• Are more loyal than family at times (Proverbs 18:24)
• Provide mutual edification (Proverbs 27:17)
• Impart wisdom to one another (Proverbs 13:20)
• Friends may even sacrifice themselves for us (John 15:13)
• We should be compassionate, kind, humble, meek, patient, forgiving, living at peace with one another, loving, and thankful (Colossians 3:13-15)
• Friends also teach one another and worship God together (Colossians 3:16).

John 15:12-15 describes Jesus, the truest friend of all, "This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends. You are my friends if you do what I command you. No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you."

Friends love one another with sacrificial love. Friends know each other well and promote one another's welfare. Does this describe the type of friend I was or had when I was younger? No.

Frequently friendships were filled with petty arguments, envy, strife, fighting, selfishness, and gossip. Many of my friendships were "one-sided" where either I or the other person gave more and tried harder to keep the relationship going, not out of love and service but from a place of longing to be accepted.

Friendship has been on my mind the last couple of years for a few reasons. First, as my health gets worse and I struggle more to get out and do things, I have thought about how to nurture friendships while still taking care of myself. It seems more difficult to maintain that closeness when I have to cancel so many plans. Secondly, when we had to switch churches a couple of years ago, it was difficult to get plugged in at the new church. This is hampered again by health issues. I cannot be there every time the doors are open like we once were. I am no longer the "do-er" that signs up to serve, clean, help, or whatever all the time. Lastly, many people have talked to me about feeling disconnected at their churches, or not having friends and community at church. I began to ponder how we can all assemble at church week after week, and yet feel lonely. I questioned what I wanted out of a friendship. What did I expect from my friends? Did I give others the same things I felt that I wanted? How can we stop being lonely in a crowd of fellow believers?


Well, I am sorry to report that I don't have all the answers. I have been thinking about all of this for the last couple of years though, and thought I'd share what has been rattling around in my brain lately. I admit that not everyone struggles in the same way I do, so perhaps not all of this will ring true for you. Younger me craved acceptance and looked at friends as someone to please so that they would love me. Friendship was a form of idolatry, something I deeply wanted, expecting it to fill a dark whole in my life. As years passed and I slowly learned that friends let you down, can't be trusted with secrets, and turn against you in a heartbeat, I started to change my views. I convinced myself I didn't need people, and I selfishly started looking for friends to meet my needs, giving little in return.

As a young Christian, a couple of close, trustworthy friends emerged, but even then our conversations with often ungodly. Complaining and gossiping about people or church, focusing on the ways our husbands were failing, or whining about our children's misdeeds. Slowly conviction crept into my heart as I studied God's word more. Truly Proverbs 10:19 "When words are many, transgression is not lacking, but whoever restrains his lips is wise" was very true. Maybe spending hours on the phone with friends was unwise? Thus began the another shift for me.

More growth in this area and I struggled to find friends who would be an encouragement, find joy in God's Word together, call me out when I sinned, and who fit the description of the things on the list above. That is when God started to speak to my heart: I need to be that person! I should be looking for those attributes in myself, not others. I was still setting my expectations too high, and expecting others to meet my needs. I think that missed the whole point of friendship. Friendship starts with being that loyal friend that scripture speaks of. Do I encourage others? Have I lovingly called someone out on their sins or challenged them? Do I pray for them and with them? How can I expect others to be what I myself fail to be? Do I look to a friend to provide something that is fulfilled in Jesus, who loves perfectly, is faithful, and knows our needs?

I am no Bible scholar, but from what I know about scripture, it doesn't tell us to choose friends that will meet our needs, or be fun to hang out with. Friendship is not about us. It isn't about getting what we want or need. Friendship should flow out of the love we have for God into the lives of others. Our Christian walk is one of self-denial, love for others, and service. As popular culture likes to say "be the change you want to see." Friendship isn't just a choice we make consciously, as if we have the power in ourselves to love others, but really because God first loved us, His Spirit and love compel us to love others. God is love (1 John 4:7), and what better foundation to build a friendship upon than our unity in Christ!

My prayer for you and me as that God would keep working in our hearts to make us a friend like Jesus, one willing to lay down our lives for our friends. I think you will find as you start become this kind of friend to others, you will look up one day and realize you have a community of true friends around you, and these relationships will be healthy, godly and bring glory to our Lord!

Merry Christmas to you all! May we all be better friends in 2020!

~Until Next Time
Shari