In an effort to ease minds of worried friends and family, I write my blog today. It’s with a pretty heavy heart. Thank you all for your concerns and prayers. I am unsure how to articulate what I’m going through right now. I am unsure how to process what I am going through. I will get through this, I always do. But, I am a slow thinkin’ kinda girl. I didn’t know what I had hoped for going to the neurologist, but I just had this feeling that I would come away from it with some clarity and encouragement. That is not what happened, at least in my present perception of things.
Basically, I wanted some official clarity on what we are calling “this.” In the past, I’ve been treated for MS. The interesting and annoying part of my case is that I am having spinal symptoms but my lesions are on my brain. Yesterday the neurologist told me a few interesting things:
1. She was totally surprised that my case would be rejected by the Mayo Clinic. Her reaction surprised me. Dude, at least another medical professional that I know of finds their rejection perplexing. I feel that if God is in control of this, and that is where he wants me to go, then why reject me? Twice. The Mayo Clinic is the place you go when you don’t have anywhere else to go… and they won’t take me. This has me concerned about my mental health – am I crazy and nobody is telling me? Do I need a psychiatrist? Why would God make me human to feel this pain and suffering and desperation and not provide a source of comfort and healing? What is so wrong with me that he wouldn’t want to help me?
2. It’s not not MS. Yes, that is a double negative. Ha. Makes sense if you don’t think about it. She told us several times that she just can’t rule out MS. But, she is hesitant to say yes this is what it is, because things are just not making sense with my symptoms and MRI’s. The MRI is just another source of confusion. I sent a letter and emails to the radiology group who processed the report, but we never did get any answers. Frustrated. Evidently in the scan that I got a four years ago, the lesions on my brain were more visible than the scan from last October because the MRI machine from 2013 is older than the one from 2009. Does it get more chaotic than this?
3. I was diagnosed with “Spinal Damage.” She is considering that a car accident I was involved in, in the 3rd grade, perhaps bruised or messed up my spinal cord and this is the consequence of that. She said my neck is 54 years old.
4. We’re treating the spasticity with Baclofen – which is used for both MS and spinal disorders. I did have noticeable results with it several years ago at a higher dose. It’s going to take a month or so to build up to that dosage. In addition to drugs, she also wants me to go to physical therapy for work on my neck, shoulders, swallowing, and tremor. I only have to go for a few weeks, but I’m feeling sort of like this is way past a few weeks of physical therapy. I don’t want to be negative, but I am trying to be realistic. She suggested a massage a week. We can’t afford a massage a year. It’s just not practical financially.
4. She wants to be vigilant with my MRI’s and scan when we find an opportune time – like when something new comes up, but… yah… this is it.
I need some time to figure this out. I don’t know where God is in this. I am so full of grief. I don’t think anybody really knows how bad I feel. I push through it a lot, but I’m sort of done pushing. Everyone has an answer, a solution, a drug, a supplement, a diet, a whatever…
I feel like I am the worst Christian that ever walked the face of the earth. Part of the reason I pulled myself off of facebook for a break is just to find my bearings. Where does this leave me and God?
I thought I felt Him and maybe connected with him as a father last week. Fatherly love diverted.
He made me with this human mind full of so many physical hopes, dreams, goals, aspirations, and ideas… change my heart, then, Lord. Let me be okay with not being an active, healthy person. Let me be okay with not having a reason for this pain. Let me be okay with wasting my energy against a battle that I don’t know how to fight. As much as my mind says to trust Him and believe that He is here, my heart is just hurting. I thought that I was going to be vindicated during this life. It’s a tough pill to swallow.
The neurologist wants to rescan in two years if nothing comes up before then. At this point, the fairest comparison I feel like I can make to help one understand what this feels like to me is this: you know when you get the flu and you have that achiness all over your body that just nags at you? You get up when you kinda start feeling better only to realize you are really not feeling better and you are tired easy, a little out of it. That is essentially the minimum of what I deal with on a daily basis. It’s not life threatening or severe. It’s just chronic. Those flu-like pains used to be mostly in my legs and then I’d get the muscular tightness because of the spasticity on top of it. Now that things have progressed into more pain in my upper body, I feel pretty trapped. My arms get tired easily at work. There are days when I get tired holding my head up. I don’t know where the boundary is on when to fight through it and when to honor the pain, I don’t know when to rest and when to get up anyways. I don’t know how to fight this.
Last week I prayed so desperately to the Lord about so many things. But, especially this doctor’s appointment. I prayed that I would be joyful no matter what. Fail. It’s hard to be joyful. I’m finding joy in my Tripp, especially, right now… and my girls and Toby always bring me a smile. I feel like my witness, though, is not what He would want me to show the world. I feel like Christians are supposed to just have faith, believe and trust in him, and go to church and smile and know everything is okay. I am not that Christian and he is not the God I thought he was.
I am willing.
I just need time.