Thursday, September 29, 2011

Found words

When you've written in journals most of your life you find things scratched almost everywhere. I was looking in some Rubbermaid tubs full of pictures and scrapbooks, and I found a little wire bound journal I was keeping in early 2001. Here's an entry from March 29th.

It's a rainy Thursday. Days like this I hurt the most for no real reason. I'm sitting on a heating pad. Today I met Dan at the mall (Dulles Town Center before they even had a Nordstrom) for lunch. When I saw him across the food court my heart skipped two beats. I am amazed at the way our love grows every day and endures through these hard times and strengthens because of them. . . (I go on to say more mushy stuff about Dan.)

I am seeing a fibromyalgia specialist in Bethesda on Tuesday. Her office suggested I try to write down all my symptoms and try to remember a timeline.

6-8 months ago I began to have soreness around my neck and shoulders and could not sleep. I felt like I had the flu. I was eventually diagnosed with mono. In the mornings especially the shoulder pain was unbearable. I began to miss work and stay in bed whenever I could.

Almost 2 months ago we got married. The day before our wedding I was supposed to go to a spa day. I could not lift my head or get out of bed. I had a fever during our wedding weekend and felt horrible. Since then my symptoms have ruled my life. I have missed so much work. My general practitioner did lots of blood work. It came back normal. He speculated about fibro and put me on Vioxx and Elavil and referred me to a rheumatologist. The appointment was weeks out. My symptoms began to worsen. When sitting or driving for more than 10 minutes I would experience sharp burning pain up butt, low back and thighs. When I wake in the morning my legs are stiff and sore. I feel like my heels are bruised. My feet and hands go numb. If I am putting pressure on my feet, like standing in the bathroom to get ready in the morning, my feet literally turn purplish blue. My feet are always cold. My arm and hand pain is constant. I feel like I have something pinching the nerves in my neck. It radiates pain into my skull. I have visible lumps of sore muscle in my neck, low back and hips.

Night is my worst enemy. I am so tired all the time but sleep eludes me. I wake 6-8 times a night. I can't get comfortable and even lifting the covers hurts my arms. I also have been doing very odd things like dropping things, running into things and tripping. I forget things mid sentence, can't think of words and am easily confused.

When I finally saw the rheumatologist she was not very sympathetic, and I feel she didn't hear me. She said, "Oh, you're so young, you'll be fine." She prescribed Celebrex and Flexeril. I have seen no improvement. My PCP called me in Trazadone and Valium. Those two drugs have helped me sleep a little better. I am only waking 2-3 times a night now--usually because I roll onto a shoulder and yelp out in pain. My jaw and other joints seem to pop and click so I hold myself in painful positions without even realizing it. I am crying now. I am 25 and depressed and so scared.

For over a decade I have suffered greatly. My endometriosis pain on top of the fibromyalgia created in me a survival mode. I lived with peaks of adrenaline and achievement and horrible lows of fatigue and failure. Only my husband and perhaps my sister, Rochelle, have really understood how I came over time to almost give in to the fact this was going to be my life.

I now believe God has been working through Danica's story to bring me to a real understanding of my complicated condition. Praise God for my PCP who worked to get my brain MRI at Mercy scheduled Thursday. A week from today I will have an upright flexion and extension MRI of my cervical, thoracic and lumbar spine in Lorain. These scans will then go with me to Dr. Henderson in Maryland. He will most likely do a rotational CT scan while I am there but having these done in network is a great blessing.

Yesterday we celebrated Danica's 4th birthday although today is her actual day. I took this picture of her this morning. Her long, beautiful white neck is straight and getting stronger. God has been so good to protect her and heal her and allow our family to live and love through the past year. I was snuggling with her as she fell asleep last night and thinking about how Danica's dependence on me and my suffering for her has made us connected in a way that is almost impossible to explain. It brought me to my own relationship with my God. Oh how I have needed Him these years.

After a quote posted on a friend's facebook page from Elizabeth Prentiss I asked my dad if he could find me any of her books and specifically the biography of her life by Sharon James, 'More Love To Thee'. It is hardcover and very difficult for me to hold for long because my hands hurt badly, but I have been picking it up on and off since yesterday. I am so encouraged by her life story and her faith through much personal physical suffering and loss.

Just like the journals I have written along the way and even this blog, Elizabeth wrote of her life and pain. These found words resonate in my heart as I watch and wait to see what God will continue to do. Our hope remains.

More love to Thee, O Christ, more love to Thee!
Hear Thou the prayer I make on bended knee.
This is my earnest plea: More love, O Christ, to Thee;
More love to Thee, more love to Thee!

Once earthly joy I craved, sought peace and rest;
Now Thee alone I seek, give what is best.
This all my prayer shall be: More love, O Christ to Thee;
More love to Thee, more love to Thee!

Let sorrow do its work, come grief or pain;
Sweet are Thy messengers, sweet their refrain,
When they can sing with me: More love, O Christ, to Thee;
More love to Thee, more love to Thee!

Then shall my latest breath whisper Thy praise;
This be the parting cry my heart shall raise;
This still its prayer shall be: More love, O Christ to Thee;
More love to Thee, more love to Thee!

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