I write these updates for those of you that have been a huge support network for Matt and I. If anything, I have learned that asking for help and support isn't a sign of weakness. I realize that the people in our lives want to be there for us and God has given you to us so we can be lifted up in times like these. We pray to God that we have also been a support to you in your times of need. I also write these updates for myself. My spirit repairs little by little when I write even if my body doesn't.
I wrote this yesterday:
Now? Now is one of those moments when the facade crumbles and the curtain falls. My fear is revealed and I feel naked. I am sick and my body is rebelling against me. I don't know why and answers won't be here when I wake up. I have to wait. Wait for doctors to read, analyze, and announce the test findings when they have set 15 minutes aside. I have to pay for their time and use my extra change to buy some energy in a Styrofoam cup as I wait. It's the waiting that kills me and the guilt. Guilt for not feeling faithful enough, strong enough, thankful enough. I buy doctors' time but I cannot buy peace. I trust God, but doing so doesn't help me do the dishes or put normal feeling back into my legs. I trust. I believe. I strive. Still, I am tired, weary, and hopeless most days. Afraid of what will be there and also afraid that nothing will. Friends and family pray and it carries me, but I still find myself on hands and knees begging for God to reveal what is wrong. Today I am weak. I feel less than human...like some desperate flower trying to flourish on rocky terrain beneath harsh winds and snow. Do I believe he will rescue me? Yes, but is it enough to only believe? Today I am raw. Real. I only want to be new.
Over the past three years of being ill, I have accepted the fact that I will have daily fatigue and cognitive problems (lack of concentration and difficulty remembering things). In fact, I came to a place where I was learning to "live around" those things. In June, I began to experience new symptoms that were really concerning. Since June my body has quickly attained new symptoms and seemed to begin a decline. There have been several occasions when I have lost the ability to move my legs properly. For 2-5 minutes, I can only wiggle my toes rather than extend my legs out straight or kick them. My speech has suffered at times--whether it's not being able to form words or slurring when I speak. The cognitive problems have become worse. There are days where I cannot remember things that happened earlier in the morning or I cannot focus well enough to read or hold a conversation.
Matt begged me to go to the neurologist so I made my first appointment on August 7th. The neuro listened to me patiently and made an immediate plan of action. She ordered an EMG test which I was able to take the next day on the 8th. If you don't know what an EMG is then searching on Google is your best bet. I can't describe all that it does in detail and I wouldn't want to bore you. In short, it checks the health of your muscles as well as the brain to muscle connection. The EMG revealed that I have muscle damage in both legs and I tested on the "low end of normal" in my reactions. It's currently unexplained since I have not had any past trauma to my legs. On August 15th, I went for my second test--an EEG. Again, Google is your best bet for finding a full explanation. Yesterday, August 16th, I went for an MRI of my spine to check the health of my spine and for the existence of any tumors or abnormalities. These results will be available to me when I have my follow-up appointment with the neuro on August 28th.
The neuro did blood work which showed that I have Lyme Disease. That is, Lyme on top of the auto-immune disease I have. I am on an anti-biotic for 14 days and I have to see an Infectious Disease doctor on the 21st of August. He should be able to tell me how long I have had Lyme. It's possible that Lyme could be causing the neurological problems I have been experiencing. I would have had to have it for more than a year, though. Depending on how the EEG and MRI results come back will determine if Lyme has caused this or if I have an underlying neurological problem.
At the end of the day, my hope is in God. That doesn't mean I don't get scared, though. Thank you for reading this and keeping Matt and I in your prayers. Please do pray for my health, but also keep my sweet husband in your prayers, too. He has been such an amazing support and I know he is tired and carries his own fears. Thanks to him for encouraging me to make an appointment with the Neurologist!
Your prayers are priceless to me. The thing that I love about your prayers and support is that I never know when you're sending them my way. They're an invisible offering of hope to us and it's often the unseen and unheard that lift us up the most.
Pressing on until the 28th.
With love,
Nikki xx
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