Judging By Everyone's Reaction...

You may have noticed that I avoid controversial (especially political) posts on Facebook. I am confrontational by nature, so it is not that I am a shrinking violet, but wisdom has taught me that online arguments are rarely beneficial.

Today I tread into controversial territory, prompted initially by my daughter who thinks I should become an advocate, and then by my frustration with the medical and legal establishments.

Judging by everyone's reaction, you would think marijuana is a bad word. Medical cannabis, to be exact. In Illinois, the governor signed the "Compassionate Use of Medical Cannabis Pilot Program Act" on August 1st, 2013. It has been over three years since cannabis became a legal option for several medical conditions, and a viable alternative to the normal pharmaceuticals that doctors prescribe.

As someone who is in a lot of pain, and has a qualifying condition, I have wondered if cannabis might be helpful. Just the fact that I have thought about trying it has filled me with shame and embarrassment. Now, three years later, I finally worked up the courage to ask one of my doctors in a quiet voice, for fear of judgment. Here is what my experience has been like.

In the past decade, I have been offered the following prescription medicines to help with pain, neuropathy, sleeplessness, and migraines. (I am not sure this list is exhaustive, as there as SO many for me to try and remember!)

Amitriptyline

Botox

Carbamazepine

Celebrex

Cymbalta

Darvocet

Demerol

Effexor

Fentanyl (pops)

Imitrex

Inderal

Klonopin

Lyrica

Maxalt

Morphine

Neurontin

Oxycontin

Prednisone

Prozac

Reglan

Topamax

Toradol

Tramadol

Vicadin

Out of this long list of drugs that I can remember being offered, I actually received a written script for about half of them. Out of those prescriptions, about half were shredded and never filled after I read about side effects and addictive qualities. I opted rather to remain in pain. Of the 25% of the list that I actually did get filled, many ended up in the garbage after a couple days. For example, on the third day taking Cymbalta, I was driving down the street feeling zoned out and had an overwhelming feeling that I should let go of the steering wheel and drive off a bridge. It scared me so much that I promptly went home and destroyed the rest of the bottle, avoiding all prescriptions for a while.

If you read about some of these, I would hope they would scare you too! Like the Fentanyl pops the doctor gave me to take at bedtime to help with pain and sleeplessness, along with a warning that someone should monitor me, since it can cause you to stop breathing! Wh-what!?!! Needless to say, I did not fill that script!

Doctors are so quick to offer these kinds of drugs to me, but when I inquired recently about the medical cannabis, here are responses I got:

• One doctor told me it would be helpful, but doesn't want to get involved. Referred me elsewhere.
• The doctor I was referred to said I that the first doctor really should take care of it.
• Another doc said that if I take illegal drugs (wait, but it is legal in Illinois if I am qualified!), he would not see me again, and then requested a drug test.
• Still another doctor thought I could benefit greatly, said it doesn't "get you high" and that it is so much safer than narcotics, but because federal laws prohibit it, he was afraid to lose his license. He did offer me a new pain medication if I wanted that instead.

I have been embarrassed during this process, and made to feel like an addict or criminal, which is sad. I am not even sure if I would like it, or if it would help me, but it seems like a less harmful drug than most of the ones listed above. There has been some promising science behind the many benefits of cannabis. Unfortunately, since it is still illegal at the federal level, there haven't been many legitimate clinical trials. So, why would it be so difficult to get marijuana legalized for medical reasons, if it could truly be helpful and less harmful? Why would doctors not want to study it and prescribe it?

A documentary I recently watched, uncovered the powerful lobby against legalized marijuana. The federal government classifies marijuana as a "Schedule I Drug" putting it in the same category with heroin. You might find it interesting that the same plant heroin is derived from (Opium), is the SAME plant that many of the narcotics above are made from.

The documentary investigated what groups are behind those powerful lobbying efforts. I was just as surprised as the person in the video to find out, that although "Big Pharma" does lobby against the legalization of cannabis, they are NOT the largest group of lobbyists behind the movement.

First, are the police and prison guard's unions. Police departments benefit from seizure laws, and that money pays for a lot of their equipment needs. Prisons are full of people serving time for marijuana-related offenses, and there is a fear many guards will lose their jobs. Second, and perhaps most surprising to me, was the alcohol industry. Their fear seems to be that people only have a certain amount of expendable income, and they don't want it spent on cannabis instead of alcohol. 

Putting away my soap box, and hoping we can all figure this out without condemnation. I would love to hear your thoughts. Please comment below (keep it nice), and tell me do you think marijuana should be legalized? Should the medical community embrace it, study it and make it more available?

Resources (just so you know that all those meds haven't cause me to dream this all up!)

1. http://www.healthline.com/health-news/latest-science-of-medical-marijuana-022115

2. http://www.nationalgeographic.com/magazine/2015/06/marijuana-science-drug-research-legality/

3. http://www.webmd.com/pain-management/features/medical-marijuana-research-web

4. https://www.psychologytoday.com/blog/the-truisms-wellness/201510/medical-marijuana-the-science-behind-thc-and-cbd

5. http://extract.suntimes.com/news/10/153/22052/wikileaks-email-reveals-alcohol-industry-tactics-against-legal-marijuana/

6. http://extract.suntimes.com/news/10/153/3870/top-anti-marijuana-lobby-groups-united-states/

The Good, The Bad, and The Ugly

As 2016 draws to a close and Thanksgiving is fresh in my memory, I am reflecting on how God has been working in my life, and the lives of my family, and friends. I have developed new and deeper friendships. I am surrounded by family and friends that have gone above and beyond. God's presence and peace have been made tangible to me through the love of those around me. I am so thankful to have such an amazing group of people willing to serve and encourage me.

I wanted to give a quick update on how things have been going.

The Good:
I am finished with the Rituximab (chemotherapy drug infusions). Since there has been some confusion, I just want to be clear that I do not have cancer. The doctors think the neuromuscular disease is an autoimmune disease. In autoimmune diseases, your immune system kicks into overdrive to attack a body system that is not harmful. In my case, I have 2 different autoimmune diseases. This new one is attacking my nerves, the older one is attacking the connective tissue in my body. Normally, your immune system should fight hard to overcome a virus or bacteria, but not substances, like your own body or pet dander, that are harmless. I have been doing the chemo in hopes that it would lower my immune system enough to stop it from working so hard. If they can get it weak enough, the theory is that the disease will be stopped or slowed. Unfortunately, with a very weakened immune system, I am more susceptible to catching illnesses.

The Bad:
I was supposed to go for one more infusion in December, but the doctor decided that since I am not noticing any improvement, we should not continue. There is still a possibility that it "helped" in the sense that it may have slowed the progression of the disease, as I have only gotten a little worse since July. The medication will keep my immune system at a lowered level for about 6 months. I may notice a sudden worsening as we approach that mark, and realize that the infusions did help, and I will have to start again. (wait, so is this good or bad, hmmm??)

The Ugly:
Where do I begin? This year has been quite difficult physically, emotionally and even logistically. There have been a LOT of tears!  Daily pain, increased weakness, and difficulty doing all the things I used to do, has become a very slow process of coming to terms with my current reality. Learning to let go of some things, rethinking how to do other things. I am still learning to ask for help, and admit when I can't do something. Sometimes I feel like a shell of my former self. It is hard to recognize myself sometimes; depression, anxiety, isolation are all new to me. I am also struggling to deal with the lack of sleep (due to pain and cramping) and the need for pain meds (I hate taking any of them).

Last week I went to be fitted for a wheelchair. It was much more emotionally overwhelming than I expected. I had no clue there would be so many options to choose! It is VERY difficult to feel as though you are losing your independence. I am thankful for so many wonderful people in my life who are willing to help in various ways, but it is hard to admit you need their help. It is extremely humbling, and difficult to put into words if you haven't lived through it yourself. My husband (and a few friends) would say "stop being stubborn and let us do things for you," but to admit I can no longer do a task (especially one I enjoy doing) is not just a logical choice, it's an emotional one. Would it be easier for Chad to do the laundry or grocery shopping? Yes, of course, but I like taking care of my home and family. Frequently, I think it is worth pushing myself and then needing a nap or having to rest for a couple of days.

Sometimes it all just seems so overwhelming. Some days I wonder how I will get out of bed and actually be productive. Other days, as I see God at work molding me, sanding off the rough spots and drawing me closer to Him, my response is gratitude and joy. This holiday season I am thankful for the grace and peace of God; for His strength that sustains me, and for each and every one of YOU that He has brought into my life. You all help me in more ways that you can possibly know! Thank you all for your prayers, help and love. Thank you for being wonderful examples of Christ's love to me, as you lay your life down in service to Him. I am grateful for all the cards, the calls, the flowers, the texts, and rides. Thank you especially for your prayers and patience as I figure out my place and new level of ability. I love each of you! <3

If you are hurting, lonely, or struggling to get through each day, know you are not alone. When you find yourself in a dark place, a place of pain and uncertainty, reach out to a friend. More importantly, I pray that you might be able to lift your eyes up to the heavens, and cry out to God. He alone is the strength and salvation for all who call upon His Name.

"Can't We All Just Get Along?"

When it comes to some of our most deeply held beliefs, we frequently point back to a parent, a teacher, or some meaningful event in our life that shaped our views. News stories, peer pressure and office talk influence us also; and the list goes on and on.

As a young person, I was an atheist. I did not believe in God, and never attended church. I didn't worry about tomorrow, and felt I felt I was accountable to no one. Why? As a child, I believed what my mother believed. It made sense to me at the time. As my mother got a little older and she read books by Edgar Cayce, and similar people, she embraced a lot of new age ideas, including reincarnation, and I changed right along with her. We talked a lot about religion and what happens when we die.

Politically my mother was what some would call a liberal, tree-hugging democrat, and so was I. We had memberships in Green Peace and World Wildlife Funds, and the bumper stickers and t-shirts to prove it. I was strongly in favor of gun control, and abortion.

This reminds me of what I have been told many times, by many people concerning parenting: "You did the best you can at the time, with where you were and what knowledge you had." As children, we tend to believe what our parents believe, and as we age and begin to think for ourselves, our views change along with us.

As a young adult, I was more agnostic than atheist, but still a Democrat, and even campaigned one year for a local election. After I became sick in 1998, and a co-worker of Chad's invited us to church, we became Pentecostal Christians. Later as we interacted more with the church, other Christians, read and learned about the Bible we shifted again to a conservative Republican stance. Fast forward to today and we are currently in the Reformed Christian, Libertarian, pro-gun, pro-life camp. But why? How could I have believed everything from the far left, far right, and everything in between?

Is it because we are smarter than others? Or more stupid? More hateful or loving? I would say NO! While our personality, life experiences, IQ and other factors may influence our belief system, it is important to recognize that the Bible is full of references to the fact the it is God who gives wisdom, knowledge, and understanding. The reason I have believed so many different things is because I am a sinner.

You may be wondering what any of this has to do with my normal writing about physical suffering and why I am bringing this up. The answer is because lately I have felt heartbroken at recent events and social media posts. Both sides of the aisle are casting stones. Lots of hate, boasting, and intolerance. At every point in my life, I had firmly held beliefs, and yet clearly I no longer believe what I did when I was younger. As I sit here today, I can honestly say that I don't always know what the truth is. I have been wrong before, and I will be wrong again. I have done the best I could, with the information I had at the time. I was passionate and sincere in my beliefs, but sincerely wrong. I need to constantly be comparing what I believe to God's word, and where I am wrong, I pray it would be made aware to me.

As a Christian, what has been most troubling to me is the gloating and arrogance I have witnessed from other Christians regarding the election. I did not become a Christian until God removed the scales from my eyes. Since it is God who is the source of all wisdom and knowledge, He alone opens our eyes to that truth. Because the human "heart is deceitful above all things, and desperately wicked" (Jeremiah 17:9), I should be on my knees in prayer asking for wisdom and humility. It is by God's grace rather than personal knowledge that we have understanding. We should be painfully aware of our tendency toward arrogance and pride, and the fact we have all held wrong beliefs in the past. We should pray for God to be merciful and uncover the areas of error in our lives, because we all have them.

I keep thinking that what we need is more love and grace towards our neighbor. People are worried and scared for various reasons. They don't need us to gloat or point out their political errors. They need Jesus. We should be in prayer for them, for God to open their eyes like He did ours, and in prayer for ourselves to be a loving, faithful witness.

Before I end, I want to just clarify something; the Bible is very clear on the gospel message and many other issues. While I have believed wrongly about things past, present and future; I know that God's word is true, and it can be trusted, but it must be handled with care. We are a sinful, rebellious people, prone to err and pride. Apart from Christ, we are headed to hell. God must remove the scales from our eyes to see Him and understand His Word. The clearly revealed truth of scripture is that unless you repent you will perish. Again, may I suggest that all of this should cause us to proceed cautiously, on our knees, in humility.

I titled this post using the famous words of Rodney King, "Can't we all just get along?" But sadly the answer is no; not apart from Christ, but we can be very gracious and remember that not everyone believes the exact same as we do. What an incredible opportunity we have been given this holiday season to be a light onto this world, and love our neighbors as ourselves. My prayer for each of us is that we would be humbled as we hear differing views on politics and other things, knowing that "such were some of you. But you were washed, but you were sanctified, but you were justified in the name of the Lord Jesus and by the Spirit of our God." (1 Corinthians 6:11)

In Christ-
Shari

You Suffer Too

I just returned from a weekend conference in Michigan entitled "Living in the Face of Suffering". Session titles had names such as:  "Hard Times", "Joy in the Midst of Suffering" and "Walking with a Limp" (a personal favorite). As soon as I saw this women's conference was within driving distance, I just had to register and attend. As you may know, suffering seems to be my middle name, and lately, the pain from my neck and back, combined with the neuromuscular disease causing burning, cramping, sleepless nights and inability to be as independent as I want to be, has been a bit overwhelming. All of this leads to me currently battling depression, anxiety, isolation and the accompanying loneliness.

I jumped (not literally, it was more like a slow hobble) at the chance to go and be encouraged. Eighty women gathered to hear, learn and worship together. It was indeed a much needed retreat from my daily life. Interestingly though, I went expecting it to be all about physical suffering, infirmities, and quite frankly, my situation. Turns out it wasn't about that kind of suffering, as the speaker focused more on the refining and sanctifying work that God does in our hearts.

I didn't glean ways to deal with my pain, but I did gain a greater understanding of the fact that we all suffer. Sometimes, I am so focused on my own issues, I forget to look up and notice everyone else's. Suffering comes in many forms- loss of a loved one, disability, failed marriage, mental health issues, a troublesome teen, being out of work, and the list goes on and on. And, yes, sometimes the rough edges God removes from our lives with sandpaper, can be accompanied by a lot of suffering as well.

The speaker defined suffering as "having what you don't want and wanting what you don't have." I never thought about it like that. By that definition, I think we can agree that we all suffer. The question then becomes how do we respond when we suffer or when we see others suffering. Our response is a choice. We can choose to ignore or withdraw, choose to be bitter, choose to shut people out; or we can choose to reach out to others in need and ask for help during times we have needs. We should learn to be vulnerable; letting people into our world. We should seek to be intentional in our relationships, looking for those who need support and encouragement.

There was a lot of talk about the importance of community, which has been a topic of great interest to me lately. The body of Christ is to be loving, serving, and caring for one another, and most importantly, praying! We should work to listen more than we speak. Learn to look for opportunities to serve others who are suffering. Maybe write a quick note, send flowers, bring a meal. It doesn't have to be an enormous effort. Just let them know you care, and are thinking about them. Pray how you might better serve others.

As we go through our own sufferings, we must learn to lift our eyes to the hills where our help comes from (Psalm 121). We make a choice- to either let it become overwhelming, or to reach out in prayer to God and in help from others (preaching to the choir here). The conference speaker reminded us that it is God who gives us our daily bread. Gives us joy for today. Grace for today. We are to live for today. Choose this day whom we will serve (Joshua 24:14-15). Is He enough for you? Is His Son enough for you?

God uses our suffering to mold us into the image of His Son, to sand off the rough edges, and to reveal our sin. Suffering may take many forms. These trials work in our lives to bring glory to God and for our own good. Reach out and be vulnerable! May we all suffer well and not do it alone.

Until next time ~
Shari


P.S. I just read a new book entitled "Being There: How to Love Those Who Are Hurting" by Dave Furman. I highly recommend it if you are looking for a greater understanding about helping those around you who are suffering in various ways.

P.P.S. For those of you who have asked, I don't have much to update. Tomorrow is my 5th infusion, and there is one more in December. I follow up with my neurologist just after the new year at the 6 month mark. I have a repeat MRI to see if there is any reduction in the nerve inflammation in a couple weeks. I also have an appointment for a wheelchair fitting before Thanksgiving, which may give me a bit more freedom. I am undergoing another radiofrequency ablation of the nerves in my neck to help with pain and headaches next week too (the last one gave considerable relief for almost 7 months).

I don't feel like there has many much of any improvement, but I also don't think I have gotten worse. Sadly, this was the "worst outcome" as we won't know if the chemo slowed the progression of the disease, keeping me from getting worse, or since the disease itself is slow progressing, it could be that I just haven't gotten noticeably worse. Time will tell. God is gently preparing my heart to accept either outcome, being content where I am today and learning to ask for help and prayer. <3

Misconceptions

This coming Tuesday, July 26, I will have my 3rd infusion of Rituxan. I am doing one infusion each week for the first month, and then another infusion every four weeks for 6 months. I knew the doctor wanted me to give it 6 months, but thought it was just the 4 weekly infusions and then waiting. It will most likely take 4-6 months to see any results, if there will be any to notice. In the meantime, we wait. So far, the worst side effects have been some nausea, mild body aches, and overwhelming fatigue. (Oh! and too many tears!) The biggest danger of the medication is being exposed to someone who is sick, because my immune system is compromised. I am being very diligent to ask people if they are sick, wash my hands frequently and sanitize everything.

I tend to over-analyze everything. I am definitely a "can't see the forest for the trees" kind of gal. While this trait can be a gift if you are trying to fix a problem or evaluate the effectiveness of something, when you are just trying to live life, it can be a real detriment. Thinking and re-thinking about everything can lead to worry and fear.

I have been going through some tough stuff lately, as I am sure you are aware. I am trying this medication after a long list of drugs that haven't worked and/or caused serious side effects. There is very little else for them to offer me. The doctors feel the benefits outweigh the risks, but the risks are real. Like any chemotherapy drug, getting an infection that you can't fight off, can be a serious and even life-threatening situation.....and that scares me a little. Perhaps, even more so, I fear that the treatment won't work, and I will end up never walking again.

Lately, when people ask me how I am doing, I respond by saying "I'm hanging in there" and that is true, I am hanging in there. You have all watched a movie scene where someone is hanging off a building and holding on for dear life. They are clutching the ledge or another person's hand with all their strength, but over time, they slowly start to slide. One finger, then another, and then just one arm is holding them up. Those fingers start to slip, and the camera zooms in to see the fear in their eyes as they lose their grip and start to fall. I feel that tension. I am slipping. I have just have a couple fingertips still on the ledge.

"Trust falls" have become a popular team building exercise to establish trust in a group. You may have seen them done or tried it with friends. One person stands with their back to a group of people, and then they fall backwards and trust the others will catch them. Why is this so hard to do, even with people you know? I think it is a control thing. Trusting others to catch you, knowing you are vulnerable and that you may not be able to catch yourself if they fail, is very difficult. It is a complete loss of control. For control freaks like me, it is an unsettling time, even fearful. I have gone through one trial after another, and each time I learn this lesson a little better: I am NOT in control. I never was. I never will be.

I am reminded that I am not alone on this ledge. Most days I still strive to hang on in my own strength, when all I really need to do is let go. "For God has not given us a spirit of fear, but of power, and of love, and of a sound mind." (2 Timothy 1:7) He has given us HIS Spirit. 1 John 4:18 says that "perfect love casts out fear" and that perfect love is found in Jesus Christ. That perfect love was pictured at the cross, as Jesus took the weight of all our sins upon Himself, and as the wrath of God was poured out upon Him. Jesus laid down His life for us and the "love of God has been poured out in our hearts" (Romans 5:5). Fear is replaced with His love. His light casts out the darkness. Despite our struggles and sufferings, we are able to rejoice, and to trust. We can finally let go. We know we can fall into His perfect, loving arms, and He will catch us. He will hold us up. He alone is trustworthy.

So, today I am letting go. Perhaps it would be more accurate to say, "Today I am letting go again, hoping I don't climb back up just to be 'hanging in there' in my feebleness." Maybe, just maybe, I have finally learned to trust and not fear. I don't know what the future holds, but I know where I will land when I do my "trust fall"........into the arms of my loving Savior, right where He wants me!

Where will you land when you fall?

Don't DIS me!

I am disabled. DIS-abled. It is probably not politically correct to call a person disabled. I think the preferred term might be "person with a disability." I have never been one to get easily offended or get caught up in semantics. I am DIS-abled. What does that mean, you ask? Well, let me try to explain my experience.

If you are a lawyer and get DIS-barred, you can no longer practice law.
If you show up to a party, and then DIS-appear, you are no longer at the party.
I was abled. Now I am DIS-abled. I can no longer do a lot of the things we used to do. If you have been following my journey, you know that I was very active and fiercely independent. I have had some health issues that caused pain and slowed me down since 1998, but it wasn't until they removed the nerve tumor in September 2009, and I lost partial use of my left leg, that I truly felt disabled.

Now you have probably all seen the Facebook posts of me climbing rock walls one-legged, or kayaking, or riding my adaptive trike, or finishing the Tough Mudder. I have pushed myself. I have tried "to adapt, improvise and overcome" as they say. What you can't see is the inner struggle. That fiercely independent woman who stills screams at me to get up and go, but quickly realizes her body hates her and isn't willing to move. You don't see the pain that comes after I push myself. Those closest to me are familiar with the constant cycle of me doing too much, and then needing days to recover.

Coming to grips with this new neurological disease, that is slowly causing me to be more disabled, is a slow and painful journey. I walk with a cane for balance now, although I should probably use a walker to be safer, and can't do long walks at all anymore. I am in almost constant pain. I don't sleep well because of the nerve pain burning down my legs, and there is the muscle cramps and twitching that contort my legs and feet into very painful positions and won't let go. This is all difficult. Harder than I imagined, and just when I think I am making progress in accepting this new reality, life smacks me in the face and reminds me how hard it all is; how much I am missing out on.

My recent struggle to push myself, or Chad would call it my stubbornness, keeps me going to the grocery store each week. I can no longer push a cart and walk around, so I have to ride in one of the motorized carts. I can only go to places now that offer the perk of a motorized carts to their customers. Without this feature, I would be unable to go shopping at all alone. Let me give you a little insight into the world of grocery shopping as I have come to see it. When I was fully able-bodied, the store was a place to go and get through as quickly as possible. There is a general pattern of traffic flow. People zip in and out and around corners, with an occasional "excuse me" as they reach for something. I know there are always a few shoppers that seem oblivious to their surroundings, either because they are on the phone, dealing with kids running around, or sometimes just because they have the ability to be in their own little world and not notice they are blocking an entire aisle, but basically the system works.

After the 2009 surgery, and the accompanying full length leg brace, shopping changed for me. I could no longer expect to get in and out of the store quickly, not because I didn't want to or wasn't physically capable of walking fairly quickly, but because people seem to want to understand me. I no longer fit their idea of a "normal" person, and I think they need to make sense of it, of me. It made for some strange and highly personal interactions with complete strangers. I couldn't get through a store without someone, and usually more than one person, asking what happened. Here is a variety of fairly common interactions:

• "Did you have knee surgery?" Quickly followed by a "Me too" and a lengthy description of all their medical issues. I tried to be polite and listen, and actually met some older people who I am sure didn't have many other people to talk to. Occasionally, I would be able to pray with someone who was hurting.
• "What happened to your leg?" Quickly followed by extremely personal questions about my health and medical record. "Have you seen this Dr.?" "Did you try this, that or the other -meds, diet, etc?" "Where was the tumor? Did it cause any other problems for you?" I think you get the idea. I tried to be polite and honest, but usually felt a bit like saying, "And any of this is your business why?"
• Others simply inquired, "Where did you get that brace? I need one like that because my knee hurts. Does it help? Can I get the name of your doctor? Can I take a picture?" I usually tried to be polite, comply with their requests without telling them this brace will in NO WAY help their knee pain!
• Last is the group that tended to yell out to me down an aisle, "Oh! I had (or someone I know had) that EXACT brace, so I know exactly what you are going through!" These were my personal "favorites" (please note the sarcasm, just because you or your Aunt Gertrude twisted their knee and wore a brace, or had knee replacement, you have NO idea what I am going through). I didn't always manage politeness in these situations, but tried to maintain composure despite being irritated and usually embarrassed as the 6 other people in the aisle heard the entire exchange and are now gawking at me.......and sometimes their children would just come stare and touch my leg.

If you are still reading, stay with me, this is where it gets good!

So, now I find myself in the situation where a motorized cart helps me be independent and shop alone. First off, let me clarify, it is NOT easy to shop from one of those. If I had a choice, I would definitely NOT use one. Have you ever been driving on a narrow road or bridge and found yourself holding your breath, or pulling in your arms as to make your car smaller? That is something I find myself doing in that cart. It is not easy to maneuver and you have to approach everything parallel to the cart and very close to you so you can reach. It makes shopping take a long time. It is a real endurance event for me between the waiting for people to leave room to fit in where I need to be, and the pain levels that build during the trip. Besides the pain in my neck and back from twisting, reaching, and looking up at everything, the hardest part is the people. Now, it seems that people no longer try to relate to me; no longer understand where I fit in their "normal" world, if I do at all. It seems people are irritated by me, or look right through me, or worse yet see me as some kind of circus freak to be avoided at all costs. Now when I shop I get one of a few basic reactions (only 1 person in all these shopping trips has stopped and asked if I needed help reaching something.):

• The first group of shoppers tend to not see me at all. I mean, I THINK they see me. I thought we made eye contact even, but then they park their cart in front of me and block where I was headed. They let their kids keep playing in the middle of the aisle and seem to not hear my "excuse me." Others rush to get around me as I am seen only as an inconvenient slow down. Some days I think I may actually be invisible! I shop with a extra helping of patience now, and ample time.
• The next group seem unsure what to do, so they dart away or grab their children and yank them, as if I were a monster too hideous to gaze upon. They don't know how to interact, so they avoid me. If given the chance, I'd love to interact and educate this group. 
• The last group is the hardest, and also the one that is making me a little ruder at the store and fight for my territory in each aisle. This is the group whose judgmental glances start the second I climb into the motorized cart, or sometimes the moment  I park in a handicap spot as they try to determine if I truly belong there according to their definition of handicapped. They stare a little too long, and look a little too disgusted for me to excuse this all as me being paranoid. This group has some bold members (albeit passive aggressive) who mumble under their breathe, or speak to their toddler as they walk past making comments about people like me being slow, in the way, taking up too much space, etc. Yep, they say all that OUT LOUD so I can hear. Twice recently I have gone to a corner of the store and cried. 

It is SO much harder to shop from a chair, although I am grateful that the motorized carts are available for my use. I feel a good about still doing something by myself, I usually need rest and pain meds upon returning home. Having a disability can be very isolating, and things like the stories above, are partially why. Sometimes I want to give up; just let Chad do everything, and stay home where it is safe and comfortable, but....

Having a disability effects the whole family. As hard as this is for me, imagine how this has affected the rest of our family. Chad works 40+ hours a week, and then has to come home and do all the yard work (which I used to do), help with or do the grocery shopping for us, help with or do the house cleaning, all of which I used to do alone. You may be thinking that doesn't sound to bad, single people care for all those things by themselves, but he also has to add the job of care taker. Have you ever helped a love one who was ill, injured, or dying? It can be a heavy physical and emotional burden. I can't go and do all the things we used to do, all the things he would still love to do but doesn't want to always leave me alone. It is the sandpaper in our lives that God uses to help us die to ourselves, making us more and more Christ-like, and it hurts.

My kids are grown now, but even they have felt the sting with additional workloads, and missed opportunities over the years. My daughter, still living at home, gives me help and time in larger quantities than most her age I am sure, and at times I am sure it is more of a chore than a blessing. I know that God is sovereign in ALL things. We taught our kids from a fairly young age that whatever our family goes through, it was all filtered through the loving hands of God. My disability is OUR disability. It affects each of us differently, but with the same goal- our sanctification, our good, and God's glory.

Having just returned from JAF Family Retreat, where it is truly safe to be in pain, tired, different, or to just be yourself, without judgment, was fantastic! Some of the families there are impacted by profound disability requiring round-the-clock care. Just imagine 24/7 care, 365 days a year!! This is why the Joni and Friends ministry is so wonderful. First and foremost, it presents the gospel to families affected by disability. They help families connect to others that understand, in a judgement-free zone. They provide care and encouragement to children and adults who face the daily limitations of disability and for the caretakers in the family that are often isolated and overburdened.

So, besides ranting, why have I shared all this? Well, for starters my blog was started as a way to educate others about what suffering is, how it feels, and most importantly, to share the love of God in Christ Jesus- His goodness, loving-kindness, mercy and grace to sustain His people.

But, today I also share all this to ask for YOUR HELP!! September 3rd, in Oak Brook, IL, my family and many others will participate in the Joni and Friends Walk-N-Roll 5k to raise awareness and funds to help those families touched by disability. I am asking you all to get involved. Would you:

1. Join my team (Tenacious Turtles) and come walk with us? Come meet some new people, learn more and be encouraged!
2. Donate to support this wonderful ministry and help me meet our team goal of $1000?
3. Share this info with your friends and family to help us meet our goal, even exceed it?
4. Turn and walk away, forgetting you read this and decide it doesn't effect you?

My prayer is for us to have a record breaking donation year! I hope that sharing my story, my struggles, encourages you to get involved and make a difference. Reach out with a kind word, or an offer to help a family you know whose lives are affected by disability......you all know at least one, even if it is somebody in a motorized cart in a grocery store struggling to maintain a little independence and dignity.

Defying Description

Have you ever been asked a question similar to "how would you describe chocolate to someone who has never heard of it or tasted it"? I find myself thinking along those lines when trying to put into words my experience this past week at the Joni and Friends Family Retreat. First, let me just start by saying if you, a friend, family member, neighbor or anyone you know has any type of disability, you need to go check it out! (Go ahead and do it right now, I can wait)

JAF Family Retreats are held in several locations each summer across the US. They also have international retreats as well. The website explains that it is a safe and caring environment for families with special needs, but that is just the tip of the iceberg. It was a truly amazing and unforgettable week! I have never experienced anything like this camp anywhere else in my life. It did not matter what your ability or disability level was, everyone was just treated with such love and respect. I witnessed what it truly means to be the hands of feet of Christ in a very real way. Volunteers helped with everything from bathroom needs, to feeding, to just being a true friend and so much more.

Each human being is created in the image of God, and although we are marred by sin and disease and death, we are all worthy of respect. I shed so many tears this week as I heard stories of how families and individuals have been touched and lives changed at Family Retreats. There is likely no place else on the planet where you can worship with such a variety of people. There are no judgmental glances or words when your child yells out, or runs around, or throws themselves to the ground. There is freedom and acceptance at a level I did not expect and cannot really explain. Disabilities ranged from mild to profound. It is humbling to see all the volunteers (many of whom are teenagers) give selflessly of their time to give families a break from the round the clock care that many of the campers need.

This was my first time doing anything like this and I was nervous that I couldn't handle it. What if I said or did the wrong thing? What if I was physically unable to keep up or do my job? All that worry was quickly washed away as I realized that I was finally in the one place where others would understand my fatigue and my limitations. It was one of the most forgiving and grace-filled weeks of my life. I enjoyed daily hugs and high fives from some of the campers, and they will be missed. I learned a lot about myself, both my strengths and weaknesses, and about God's sustaining grace and overwhelming mercy to gently show me my sins, help me to love others and give me His strength to get through the week.

We are back home and I am knee deep in dirty laundry, unopened mail and staring at an empty fridge. I really want to hop back in my car and go back to Michigan for week 2, but alas it is not to be. Only 51 more weeks until I can do it all over again though!!

This week's verse was from Nehemiah 8:10 "The joy of the Lord is my strength" and I can say I experienced that joy this week! Tears and pain and fatigue were plentiful, but overarching it all was God's joy.

Would you consider coming and serving alongside me next year? If that isn't a possibility, maybe you can give so that we or others can go serve (all volunteers have to cover all travel, lodging and meal expenses), or offer a scholarship to a family who could use a welcoming vacation among friends. Share the gospel message and love of God with those families affected by disability and be the hands and feet of Jesus in a real, loving and practical way.

Be encouraged and enjoy our theme song from the week!

Christian Service

"For even the Son of Man did not come to be served, but to be served, and to give His life as a ransom for many." Mark 10:45

So many times I have approached a task by thinking that I have something to offer, that I can do something to be a blessing to others. You would think by now that I would know better! God has shown me over and over again (apparently I am a slow learner) that whenever I show up to serve others, or to complete a task He has given me to do, that it is I who am blessed. I learn and grow each time. It is God who purposes and places us to perform the tasks He has called us to do. It is the LORD'S work, not ours. He uses a variety of people in a variety of places and circumstances to accomplish His will and for His glory. We may not always like the task He has given us. We may not be happy where that task leads us (49 degrees in Michigan this morning....and we packed for summer), but we need to remember that it is NOT about us! It IS and always SHOULD BE about HIM ALONE!!!

"...whatever you do, do all to the glory of God." 1 Corinthians 10:31

We should work and serve "heartily, as unto the Lord and not men, knowing that from the Lord you will receive the reward of the inheritance." (Colossians 3:23-24) We are not to be self seeking. Romans chapter 2 warns us that it is "God, 'who will render to each one according to his deeds' : eternal life to those who by patient continuance in doing good seek for glory, honor and immortality; but to those who are self-seeking and do not obey the truth, but obey unrighteousness - indignation and wrath, tribulation and anguish, on every soul of man who does evil.....but glory, honor and peace to everyone who works what is good." Rewards are not given based on our success, but on our faithful service.

If you know me at all, you know my many weaknesses. I am a detail-oriented, perfectionistic, control freak, that has a hard time "going with the flow"!! This week I am serving at Joni and Friends Family Retreat with my husband, Chad, and my daughter, Katherine. Once again God is at work in my heart. Things may not always go as planned, but God is faithful and patient to show me His goodness and kindness through others. This week our theme is the JOY of the Lord is our strength from Nehemiah 8:10. The week is just getting started. I am tired already, and because of my disability I don't have a lot to do. I have way more free time than I expected. It is difficult to get around this large campus. I feel a bit isolated. I am not one of the families or campers here, but I am also not really one of the STMs (short term missionaries). OK, technically that IS my "job title" and yet I am only working a couple hours each afternoon sitting in the bookstore 3 days this week.

Why am I telling you all of this? It is part confession and part (hopefully) inspiration. Last night I returned to my room and wondered why am I even here. I am too tired and have too much difficulty getting around to do all the things I anticipated. I am new here and don't know where to really go do something that I can do to be useful. I feel under utilized. I. I. I. I. Yep! Last night I realized it isn't about ME. God didn't bring me here to serve Him so I could throw a pity party for myself. So I woke up this morning and read and prayed and found a great sermon to help me get my eyes focused back here they should be.

My eyes should be on Jesus, and my service offered to Him. It is not about me. It is not about what I want. It is not about my abilities or inabilities. It was never supposed to be. Here is Alistair Begg's introduction to the sermon that greatly blessed me today- "All who are called to Christ are called to service. With any ministry, it is important to keep in mind that it is the Lord's work; He assigns the tasks and uniquely gifts a variety of individuals to work together to fulfill His plan, for His glory. The ideal place to serve God is wherever He has placed you, doing whatever He has given you to do. As Paul notes in his closing remarks to the Corinthians, great opposition often accompanies effective ministry."

Such a good reminder that when God hands us a job to do, we need to go and do the job! Accept your limitations- you can't do everything. Embrace your responsibilities- you can do something. We cannot worry about whether or not we do it perfectly. It is not about whether or not you like this job, or like him/her you are working for or with, but instead, it is about doing the work of the Lord. What I should be concerned about is 'am I doing the work of the Lord?' That is the real issue.

Once again I am humbled and repentant. I am thankful for the work that God is doing in my heart as I learn to submit and to trust and to lay down my life in service to Him. So I carry on, not in my own strength but in His. I head out to meet and talk to as many people as I can, because God has already shown me that it is the little moments- a kind word, a gesture, or just being available to can be a blessing to others and to myself. I am here this week to serve God in the way He has prepared in advance for me to serve. As much as anyone here, I have a lot to learn about myself, others and the Lord of the universe. May God alone be glorified!!

Get up and go do the job to which YOU have been called.......

"Let us not grow weary while doing good, for in due season we shall reap if we do not lose heart." Galatians 6:9

Celebrating Joy

Back in 2013, I wrote about my daughter, Katherine, who was about to go serve for a second year at Joni and Friends Family Retreat. I am proud to say, she has now served four consecutive years, and is preparing for her fifth next month. I am excited to announce that in June, my husband, Chad, and I will be joining her!! She is super hyped that we finally signed up to go along! Their theme this year is about celebrating joy, which makes me think of these verses from James chapter 1:

"Count it all joy when you fall into various trials, knowing that the

testing of your faith produces patience. But let patience

have its perfect work, that you may be perfect and complete,

lacking nothing."  ~James 1:2-4

Some days it feels as if my life is one continuous trial after another. I am both excited and nervous to go and serve this summer. There is not much new to report about my health, but I definitely feel that the numbness and weakness are getting worse to the degree that I have decided to try the final choice in medication. I have struggled recently dealing with my need for help with so many of my daily activities. Katherine assures me that if ever there was a place where it is okay to be unable to do something, to be sick, in pain, or need to rest, it is at a JAF Family Retreat. My next appointment is on May 13th, my birthday, *shameless plug*, and I will discuss starting Ritixumab at that appointment. I am going to ask that we start it after my return from Family Retreat, since I do not want to be sick during that! In the meantime, I am trying to adapt to my new "normal", praying God might be merciful and bring healing and that the medication might be effective without any of the very serious side effects.

Regardless of my current health issues, I have joy in knowing God, knowing He can still use me, despite my disability and circumstances. I trust that my trials are producing patience in me. I am learning to be more compassionate, which is historically not my strong suit - just ask Chad how sympathetic I am when he is in pain or sick! I am thankful for all that God has done (and is still doing) in me. I look forward to being at a place where no one judges me by my inability to do something, but where they simply see me as a child of God, created in His image to bring glory to His name. Ultimately my joy comes from knowing that Christ has secured my salvation, and "our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory." (2 Corinthians 4:17)

I covet your prayers for my health to get through this upcoming mission trip. I know God is faithful and will strengthen me to accomplish all that He has called me to do. I pray that God will revive my own heart, as well as let me be an encouragement to someone else. I am truly feeling blessed that I will get to serve alongside some of the greatest people on earth (just ask Katherine, she can verify this)! I cannot wait to return home with pictures and stories to share! 

Are you letting trials steal your joy or keep you from doing something for God? Don't let trials hold you back! Keep your eyes upon Christ, and He will give you strength. "For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them." (Ephesians 2:10)

Hope Springs Eternal

Spring is always such a glorious time of year in the Midwest. After a few months of cold and dreary weather, rays of sunshine help to boost my mood. Birds are building nests, the tulips are blooming, and signs of life have returned with the sounds of children playing in the neighborhood. We always joke about hibernating during the winter, and that isn't far from the truth; between the wind, ice and snow, I am stuck at home more often than not, and we rarely see neighbors. Spring brings sunny days, awakening in us the knowledge that warmer weather is just around the corner.

It has been a very rough winter. I have not blogged much, partly because I haven't felt well, and partly because I feel the need to having something important to say; to have a well thought out analogy to encourage others, and sometimes I honestly have nothing earth shattering to post. I tend to put too much pressure on myself and I hope to write more frequently this year with just everyday stuff.

Since my last post, I have started and stopped a few medications that have caused a lot of side effects, have had multiple colds, the flu, bronchitis, pharyngitis, and a sinus infection on top of everything else. Most recently I have been treated for an ulcer caused by the meds that were suppose to help the neuropathy. Stopping all the medicine to help my stomach heal caused a flare up of pain and triggered a round of migraines. A few weeks ago, I wasn't handling it all so well; lying in bed and praying that the suffering might end, whether through healing or death.

Suffering is not easy. I pray constantly for the grace to handle whatever the future may hold. I pray that I may suffer well, if suffering is to be my calling. I pray that God might be merciful and heal me, but most importantly I want His will to be done, and not mine. Chronic pain wears you down. There have been lots of tears and repentance. Repentance for my doubting, for my whining, for my constant pleading for mercy and striving against what God's plan for me is. I hurt. A lot. We all walk paths that are difficult. We all struggle and fight against the reality of our lives and our own selfish desires. I selfishly desire to be pain free; to live a long, happy and "normal" life. But when I am really trusting God, reading His word, and praying; I am reminded of the hope that is found only in Him. I am able to continue down this path, by His grace.

"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 ESV)

 So as I hear the birds chirping and put on my sunglasses to block the sun's bright rays, I am reminded that my ultimate hope is found only in Jesus Christ. My prayers were answered at the cross. "For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory." (2 Corinthians 4:17). This life is temporary, but my hope is eternal. I may be in pain here on this earth, but the greater good was accomplished through Jesus, who secured my salvation. I will not suffer for all eternity apart from my Savior, and that promise keeps me going on days I want to give up. My eyes are lifted upwards and my hope springs eternal.

Are your eyes fixed upon Christ or on your own sufferings? Pray and ask for the grace to suffer well.