“There is a me you would not recognize, dear
Call it the shadow of myself
And if the music starts before I get there
Dance without me
You dance so gracefully
I really think I’ll be okay
They’ve taken a toll, these latter days
They’ve taken their toll, these latter days”
– Over the Rhine “Latter Days
The past year and half have been some of the hardest and most miserable months of my life. Right around the time of our move in October 2010, I started having health issues. It started with a bad cold that wouldn’t go away. I had it for over a month and finally had to take steroids to keep it under control. After that, I had numbness and tingling in my hands, fingers, feet and toes. That went on for a couple of months. Then came the debilitating fatigue. I’m not just talking about being tired, this is a fatigue that there just aren’t words for and doesn’t go away no matter how much sleep I get. Some mornings I can’t move my limbs and I can hardly open my eyes. That symptom, unfortunately never went away. Then I started having severe muscle and joint pain. Thankfully, I was prescribed a medication for the joint pain a few months ago and that has helped quite a bit. Most recently, I have been getting migraine-like headaches, the likes of which I have never experienced in my life. I woke up with one today and cried until I willed myself out of bed. It feels like my head is in a vice and my brain is on fire. As if this symptom “list” isn’t long enough I also have abdominal pain, trembling hands, cognitive problems, dizziness, continual sinus infections and nausea.
Throughout this last year, I’ve been incredibly frustrated with this earthly body and its physical limitations. I’ve also been really angry at this fallen world that carries so much disease and illness. I have been mad at the health care system and how it feels like I am just a number (or dollar signs) to most doctors. I have had tons of appointments, countless tests and blood work, too many copays and yet no diagnosis. I have sat bawling my eyes out in doctors chairs, desperate and humiliated because I was getting no where and yet spending so much money in the process. I was given a life time sentence of “chronic fatigue syndrome” and that was it. I was told by my previous doctor that she wasn’t going to order anymore expensive tests for my “symptom of the week.” I really think a lot of my friends (maybe even my family as well) were starting to believe that I was a hypochondriac, that my symptoms could possibly just be in my head.
But, because I know my own body better than anyone else, I decided that I couldn’t accept this as my new way of life. I just knew I had more than CFS. I didn’t stop searching and praying for answers. I needed a remedy. I knew that I was too young to feel like a 32-year-old trapped in a 90-year-old body. I think the final straw for me was one day a few months ago when my youngest daughter was throwing a fit about not going to the store. We were out of groceries but no matter how I bribed, persuaded or pleaded with her, she wouldn’t budge. I finally got eye to eye with her and asked her what was going on? “Why do you not want to go run errands with mommy?” In a very matter of fact way she said, “Because you will be too tired to play with me when we get home.” This was a revelation to me that my illness was affecting her in bigger ways that I even realized. I needed to find someone who would help me. I was not going to continue making my 5-year-old listen to me cry while I tried to wrestle up the energy to get out of bed so that I could take care of her or have her worrying about leaving the apartment because mommy would need to rest after every outing. Last night as I was falling to sleep, I decided that my goal for the next day was to walk my dog before I went to my doctor’s appointment. If I didn’t do anything else, I wanted to give him a proper walk. When this is your main goal for an entire day, you know you are not well. But I didn’t even realize how crazy it seemed until I thought about it today on the way to my doctor’s appointment. Even my flipping dog is suffering because of my health!
After talking to a friend about a doctor who does things a little differently and hearing so many positive things, I quickly made an appointment back in November but he was booked until January!! Again, I was frustrated but made the appointment, hoped and prayed. My first appointment with him was about a week ago and after almost 2 years of the same old thing and no answers, he pricked my finger, looked at a tiny spot of my blood on a little glass slide under a microscope and told me that it looked like I had Lyme Disease. A few days later after sending the sample to another doctor, it was confirmed. He even saw parasites in my blood as well. The reason I was in so much pain is because I am in “Stage 3” (or chronic-disseminated Lyme Disease) which just means that I’ve had it a long time and over time the bacteria spreads to your muscles, joints, tissues, organs, really everywhere in the body – even the brain – and makes you feel like crap all the time. It felt like a miracle. It took him 10 minutes to figure out what had left other doctors stumped for almost 2 years! To have a diagnosis was something I wasn’t sure I would ever get and some people who suffer unknowingly with Lyme Disease – never get. I am more than thankful. I have an answer and a plan set in place for treatment. When you don’t know what is wrong, you can’t treat it. Knowledge in my case, was HUGE. It was everything. Without it, I would still be fumbling around doctors offices, asking question after question, feeling crazy and trying to get people to believe that I truly had something wrong with my body. With a diagnosis, I can try and treat this disease.
I know it seems like most of my posts lately end up speaking “christianese” and may sound very “churchy.” But I can’t help but see God in this. I realized this morning between tears of pain and hopeful thoughts of possibly starting treatment today, that in our spiritual lives, if we don’t know what is ailing us – what is keeping us from God – then how can we know what the remedy is? How do we know what will fix our broken hearts and our aching souls if we don’t even know what is making them broken in the first place? I think that is why so many people fill their lives with meaningless relationships, expensive gadgets, drugs, alcohol, work, etc. It is all meant to fill that space between us and God, to make the sickness we feel in our heart go away. But what is not known is that the sickness is the lack of a relationship with Jesus. If we don’t know what ails us, how in the world can we know the cure? Jesus fills the space between us and God. We can go directly to Him without the need for a priest or a pastor, without a sacrifice, without works, without religious ceremony, without anything we can do, say or bring to the table. He is just there waiting for us. He is waiting for us to give him our disease so he can do what he does best, heal.
During one of my hardest months this past summer, I picked up this awesome little devotional called Jesus Calling and this excerpt was one of the first that I read. It spoke volumes to me because I literally have had to learn how to depend on Jesus just to get through an afternoon. I hope it speaks to you too.
“Grow strong in your weakness. Some of my children I’ve gifted with abundant strength and stamina. Others, like you, have received the humble gift of frailty. You fragility is not a punishment, nor does it indicate lack of faith. On the contrary, weak ones like you must live by faith, depending on Me to get you through the day. I am developing your ability to trust Me, to lean on Me, rather than on your understanding. Your natural preference is to plan out your day, knowing what will happen when. My preference is for you to depend on Me continually, trusting Me to guide you and strengthen you as needed. This is how you grow strong in your weakness.”
(Jesus Calling) James 4:13-15; Proverbs 3:5; Isaiah 40:28-31