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.


  1. Facebook isn't letting me comment, so I will here. As your friend, I don't want to see you suffer. As a sister in Christ, I see a beautiful transformation underway. If we can somehow see with the eyes of our Father in heaven, we will see not a process of breaking down but of casting off the unnecessary, like the remains of a cocoon. I pray you'll feel less of the burden and more of the spreading wings. Yes, it will take an act of God, but we have a God who is mighty and tender! Love you, my friend.

    1. Thank you so much! You have such a way with words, and gave me a beautiful image. I feel the same way, and while I wish I didn't have to walk this path, I have felt God beside me the entire way- shaping, molding, pushing, and guiding. Thankful for a loving God, and amazing friends! Looking forward to the day the lame will leap <3