Wednesday, November 30, 2016

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.

Monday, November 14, 2016

"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-

Monday, November 7, 2016

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 ~

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