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A New Patch – Tarlov Cyst Disease

February 16, 2013

Last June,  I was diagnosed with  a painful chronic illness (Tarlov Cyst Disease). Most of my friends, even those who understand the extent of my current symptoms, don’t realize how serious a disease this is.

SInce I am 8 weeks post op from Tarlov Cyst surgery and will be starting my journal from this point forward, I will go back and add a summary of my pre-op and early post-op journey in the next few days. My desire is to give hope to those “googling” for information about their new diagnosis or to those who are contemplating having surgery.

Currently, I have two main struggles that are intertwined: the balance of medications and activity, and the fear of tomorrow.

The Rx Balancing Act
Unfortunately, I feel better on medicine. Did I mention that I would prefer not to take medications? Worrying about the consequences of long term drug usage weighs on me. What will give out first? My ability to withstand pain or my liver?

My second medication concern is that if I take the dosage I really need, will my body will become acclimated to the drugs? How soon they will stop working?

The Future
This disease is painful and debilitating. Not worrying about tomorrow is difficult. I am a born-again believer in Christ. My hope is in the Lord. I want my hope to be in the Lord. “So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own” (Matthew 6:34 NASB). Right now I struggle to enjoy today and not worry about tomorrow. It is a process.

This post sounds negative. Sometimes I am. Most of the time I am positive and hopeful.

Things I did today:
1.) Went to a house where our church members had gathered to paint. I needed to pick up my daughter to take to her cheerleading practice.
2.) I went to the Verizon store. I have had cell phone issues for the past week. I waited for my turn and was able to stand comfortably to discuss my issues with the Verizon associate (I am getting a new phone.)
3.) I took and picked up my daughter from cheerleading practice.
4.) Sat a lot. It wasn’t always comfortable, but I did it.

Current Medications:
1.) Lyrica 75 mg at bedtime
2.) Motrin 800 once (I think) Honestly, I forgot if I took any.

Last week I used a 7 day trial of Celebrex that was prescribed last summer. It was amazing. I almost felt normal. I did not realize how badly I felt until I felt better.

I am going to the doctor this week and getting a Rx for the Celebrex. So much for my liver or my stomach lining.

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