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!

Thursday, September 15, 2011

But you don't look sick

I have tried over and over to write in some meaningful way about my pain and symptoms. I am harder on myself than anyone, and so it always seems to come out sounding weak and complaining and just wrong. I feel pressure to put some kind of spin on this suffering. You see I have lived for a very long time with the eye rolls and whispers and in your face exclamations, "But you don't look sick!" Even after all the emergency room visits, the scans, the bleeding episodes and the surgeries for the hidden disease, endometriosis, I would beat myself up in secret. When my kidney was blocked those months I was pregnant with Danica I experienced nurses who would actually scold me verbally for using the pain medication I did to make it through. Even well meaning family and friends would gossip that there must be something psychological going on. Yes, the dreaded, "It's all in your head."

It was and is in my head and every where else too. Even as a young child I would complain about headaches. They would come from my neck and up the base of my skull. I would ask my mom to rub my neck and shoulders and push on my bones. As I got older I begged her to take me to a chiropractor. I would sometimes get relief from these adjustments and sometimes feel even worse. I'm not going to tell my life story of pain here, but I just want to explain this is not a sudden onset kind of thing. There were periods of trauma or illness in my life that made me much worse. In 2001 after months of widespread pain and a host of other symptoms I visited many specialists in the DC area and was finally diagnosed with fibromyalgia. Over the past decade I have tried almost everything possible including medication, trigger point injections, therapy, supplements and of course lots of prayer. I have always lived with more bad days than good. For years I have edited my life down to the basic things I must do. Any stress, even good stress, can send me to bed or make me sick.

I finally found the perfect analogy on a website to explain what my life is like. It's called The Spoon Theory and is written by Christine Miserandino.

Recently I have been recording video clips instead of blogging because my hands and arms are in so much pain and my head hurts so badly. If I were brave enough I would post one here. I actually DO look sick of late. I haven't had any hair care since April. I'm gray and have split ends and my hair is falling out all over. I only shower every three or four days because it's one of the things that definitely takes away the most spoons. Washing my hair and shaving are painful and exhausting. If I have an appointment or somewhere to go I cannot plan to get ready and do the planned activity on the same day especially if I also have to drive. I say "no" to almost everything and if I say "yes" I often end up canceling. Literally the one thing a month I am committed to is somehow making it to the book club I attend. These ladies are some of the only friends I have here in Ohio. I love to be with them. Their faithfulness to me during the past years is amazing. This is the one thing I do for me that I enjoy completely. Tuesday night was our September meeting, and I have never wanted to leave this basement and go somewhere so badly. By mid afternoon I knew there were too few spoons. Dan is still having kidney stone pain, (He will have another x-ray and consult with a new urologist on Tuesday) and I could barely hold my head up. There was just no way to even push myself.

The past two days have been even more brutal. By mid day I have to lie down. I have pressure in my skull and neurological symptoms like facial numbness, hearing loss and vision disturbances. My neck is so tight and knotted and the pain and weakness extends down into my arms and hands. I feel like I have little spiders crawling on me and my muscles twitch and jump. The spoons I have are reserved exclusively for taking care of Danica and helping Laney with her school homework and our bedtime routine. If I haven't emailed you back or responded on facebook or called you or written you a thank you note or sent a birthday card it's because I am just making it through.

Last Sunday one of my book club friends, Sarah, came to visit me. She brought me the gorgeous spoons shown above. I had never talked about the spoon theory to her, but she had seen me mention it on my facebook status and then lovingly searched for this gift to encourage me. I'm a person that likes to hold onto things when I pray. These spoons are my new prayer partners. When I have nothing left to give I pray for Faith, Hope and Love to carry me moment by moment, grace to grace, strength to strength.

Sunday, September 11, 2011

Faithful Soldiers (A Dan post)

In a recent sermon our pastor expressed as believers we are soldiers in the warfare of this world. If you believe God's will is being done on earth as it is in heaven then you can understand the many battles on earth are really a part of a bigger plan often unexplained to us while living here. My life seems a never ending fight from sunrise to sunset, and I have been through many skirmishes. My Mom's death, wandering aimlessly in college for many years, the many frustrating jobs I've had, my Dad's shooting and heart attack, my wife's ongoing struggles with daily pain and of course our journey with Danica have wounded and scarred my spirit. Even the peace and tranquility in the weight room finds me in a war my herniated disc, kidney stones, tendonitis and shoulder pain. I'm so often angry at the constant battles I endure everyday. Life seems way easier for most other people I know. Somehow my faith in God's will remains steadfast through it all. I pray for forgiveness when I am angry and having the mindset of a soldier gets me through the long days and nights.

On a recent evening Danica awoke with a high pitched constant shriek. It was a wail loud enough to instantly wake anyone from a deep sleep. It took me two seconds to get into her nearby bedroom to discover blood all over her face. My wife, had she entered the room first, may have passed out at this sight. Many years ago Delaney went head first into the corner of a metal filing cabinet at her Montessori school. She required thirteen stitches in her forehead and someone had to help hold her still in her straight jacket while the deep wound was closed at the hospital. Monica had to sit outside listening to her baby girl scream in agony for several minutes because she could not look at the wound without fainting, and I had to step up to the plate. It turns out Danica was screaming from a nosebleed that night, and my "soldier training" instantly kicked in. I remember calmly raising my voice to Monica alerting her to follow me, and then I pulled Danica into the bathroom grabbing a wet washcloth. Because of Danica's medical history we were imagining it was much worse and signaled something more serious than an isolated incident. Strangely, even in the middle of the night, I was ready. I was mentally prepared. The truth is I am always on alert waiting for the next fight.

Had it not been for my life struggles and recent experiences with Danica, I may have dropped unconscious as well when entering her bedroom that night. Seeing Danica get carried away in the arms of a nurse before her first brain surgery was gut wrenchingly painful. Watching her twirl her pink butterfly umbrella into the operating room for her second surgery was cataclysmic for me. I didn't think life would continue for me after that. For three days following Danica's last surgery she was out of control because of the drugs, her pain and the brace. It took three adults to hold her round the clock. I saw my wife had become much stronger too. She refused to leave her side. We have learned there is no time for fainting or crying when another soldier needs you to be strong.

Ten years ago 3,497 people lost their lives in an attack against the United States. The only sense I can possibly make of that tragedy is believing, as most Christians probably do, that every faithful departed soul is now in a much better place than here on earth. The pain of the survivors and family of those who perished is ongoing. Wives losing their husbands. Children losing their mother or father. Mothers and fathers losing sons and daughters. I cannot begin to understand their feelings on this 10th anniversary, but I am blessed to witness how many have soldiered on in this life.

My wife, girls and I have a long way to go. There is no guarantee that any of us will get our life back after all the trials we as a family have already overcome, but there are glimpses of hope. Danica is doing really well, and we hope that Dr. Crawford tells us in late October that her bones are completely healed. We pray she will begin preschool early next year. Her cheerfulness and strength of spirit carry me on days when I want to give up.

Delaney, who has faced many challenges since her sister was born, is doing very well in 4th grade and has several friends in our new neighborhood. She is turning nine tomorrow. The obstacles she has met in her life have made her a very well rounded individual and somewhat independent at such a young age. One thing that amazes me is how she gets out of bed early every morning and prepares for school all by herself. She has developed her talents in art and is thrilled to be back in the barn and riding horses again.

Monica has found some temporary relief of her pain from massage therapy once a week. The benefits last for a few days before her body becomes all knotted up again. She struggles to make it through the day until her body shuts itself down from pain and exhaustion. We travel to a Maryland specialist at end of October and pray for answers and help. I have soldiered through this pain with Monica since I met her. No one knows more than I how real this is and how much she wants to be better so she can live and love.

I am hoping I'm kidney stone free now. The tendonitis in my arm can be restrictive, but I'm getting closer and closer to being back in the shape I was in when I was younger. I need to stay in fighting form, so I'm ready for the next battle whenever it comes. What I absolutely love about this family is that we adapt and overcome. I realize that phrase is "soldier talk" but it's true of this family. We are a strong unit, and we'll carry on with whatever future challenges we face with God's help.

Due to this blog we have heard the stories of many families in similar situations to ours and many being far worse. So many people do not get to watch a miracle unfold like we are with our Danica. We long to be able to support them financially and in service, but we cannot, so we try to help, usually with sharing our story and lifting them in prayer. From a husband and father's perspective struggling with medical bills, moving your family into someone's home and accepting charity from others to make it through all can be very demoralizing.

A male survivor of the WTC attacks, who was actually near where the airplane struck, was able to escape and survive while several of his friends/coworkers did not. He struggled with guilt but soon realized that he had to live his life. My father recently echoed the same belief stating he wakes up and does his part in the world trying to make each day better than before. For me it's about my wife, of course, but mostly for my two daughters. They need me, and I need to get them prepared for living their own life and fighting their own battles. And so I pray for the grace to be a faithful soldier. I am finally beginning to realize we will always have pain and struggles in this world, but there is a bigger picture that will be revealed and victory is a sure thing in Him.

"Endure hardship with us like a good soldier of Christ Jesus." II Timothy 2:3

(Dan wrote this last night and this morning. As I'm posting now he's in a great deal of pain. He believes a stone is stuck in his ureter again. Please pray for an end to this suffering for him. Thank you.)

Friday, September 9, 2011

My God will meet all your needs

"I have received full payment and even more; I am amply supplied, now that I have received from Epaphroditus the gifts you sent. They are a fragrant offering, an acceptable sacrifice, pleasing to God. And my God will meet all your needs according to his glorious riches in Christ Jesus." Phil. 4:18-19

I have quite a few posts I've worked on here and there the past couple of weeks. Danica's website has been down more than up. I have been frustrated and not able to really get it fixed or understand why. I wasn't directly involved in setting up the URL, so I am dependent on someone else. You'd think by now I would be a little better at asking for help and not being in control, but when it comes to technology I get really crazed.

In the meantime God has been answering some direct needs in amazing ways. One of the specific prayers I have had since I scheduled my three days of appointments with Dr. Henderson in Bethesda for October 19th-22nd, is clear leading. If this is where I need to go to finally get answers about my health God would provide the money. The first expensive visits must be paid up front. The travel is costly and immediately following we have another two day trip to Cincinnati for Danica.

In just a few weeks three separate events have been scheduled to help raise money for our family. Our dear photographer and friend, Christina Adam, of Grace Designs Photography planned a fundraising photoshoot for tomorrow. Within several days all 20 slots were filled. She has also set up a "chip in" account for people who would like to help but cannot attend. Her sweet event note has all the details. While I was sitting in the hospital during Dan's surgery Tuesday I got a note from Christina telling me her friend Alivia has a blog, Simply Give, and she was planning a silent auction to help us as well. My friend, Apryl, is also planning an event on Thursday night, Septmeber 22nd, at Faith Bible Church. I will make sure to link when I have more info. Here's the amazing thing, when I was trying to work through the blog issues and found all these sites pointing for one reason or another to Team Danica I stumbled across Kerri Wyatt Kent's e-newsletter on God's provision. It took me back to that first gift that God sent to show us He was indeed going to meet our needs. If you read through our story it chronicles the manna. He has always supplied enough for today and always made it clear it is from His hands.

Saturday night Dan and I had a soul wrenching heart to heart. He expressed to me how painful it has become for him to accept this help through people. I think we both thought we'd be climbing out of these circumstances by now. For a man who longs to be THE provider for his family it is particularly humbling to admit you just cannot do this alone. I am sure our family has acquired some critics of the compassion we have and continue to receive. Believe me, we torture ourselves with knowing others in similar and worse situations who have little or no support. We long to be able to finally be the ones strong enough and healthy enough to be giving back. We can only be faithful here and continue to humble ourselves and give Him the glory.

Thank you so much to each of you who continue to pray for us and love us. May God bless you as you continue to offer sacrifice for our family.

An hour in the saddle

"No hour of life is wasted that is spent in a saddle." Winston Churchill

A week ago Delaney began riding lessons again. A dear friend of a friend had read our blog and noticed one of the posts about Delaney's sacrifices over the past few years. She contacted my friend and offered to give Laney horse riding lessons. With the start of school and getting back into a routine and Delaney's birthday coming up Monday we surprised her with this kind "gift" from a stranger. On a sticky hot Thursday evening my mom, Delaney and I headed out to Clinton.

To see Delaney's eyes light up as we entered the barn made my heart swell. There are things you just know your child is meant to do. Not being able to continue lessons was definitely one of the most painful things for Laney to give up. Sweet Kristina is the perfect teacher for my girl. She introduced us to Buddy, a beautiful five year old Rocky Mountain horse. One look into his eyes, and both Laney and I fell in love.

Delaney remembered many of the things about grooming the horse and also riding. When she finally got in the saddle I cried. After her lesson in the barn Kristina took her up the lane towards the setting sun. My heart ached with gratitude for this possibility. Thank you God, for my Delaney Jayne and the passions and talents you have given her. Thank you for life changing generosity with perfect timing that blesses our hearts and gives us new reasons to keep hoping and believing.

Saturday, September 3, 2011

I can do all things . . .

This month is bringing all kinds of "a year ago" flashbacks. I decided to read through my September, 2010 posts to remember. I was still in bed recovering from surgery and both the girls birthdays needed to be celebrated. Every day held the weight of what we were headed into with sweet Danica. The entry titled Fixated made me weep out loud.

I am struggling to even type this. My arms and hands are weak and shaky. My neck and shoulders are twitching and so painful. I had a fascia treatment this morning and like the past few weeks I come home feeling a little better and try to make up for the week I've spent in bed. I tried to do laundry, wipe the floor, clean the bathroom, and dust. I wanted to get something done before my body failed me. Then I had supper to make and Danica needed a bath. Although the lower level in my parent's home is one floor the truth is I do steep stairs more here than at our old house. I have to cook upstairs. Laundry is upstairs. There is only a shower down here so Danica has to have baths upstairs. I get to a point where I am pushing myself beyond what I really can do. I must. This is my life. I cannot quit. We cannot quit.

Neither Dan nor I have any tattoos. We've both said from time to time we really want to get one especially since our journey with Danica. The truth is we would never really spend the money for something like that with all the financial burden we have been and continue to face. Several Sundays ago Dan came home from church with a renewed intention to mark his upper arm. He designed a tattoo with the Scripture reference Phillipians 4:13, "I can do all things through Christ who strengthens me." He has always needed to be in the gym to renew himself physically and spiritually. Lately He has suffered so much that the one thing he seems to really enjoy in life has been taken from him. He has pushed himself through pain to try and continue his routine, but he is weak. Tuesday Dan will have another surgery at Mercy to try to treat a cyst on his kidney and more stones. Neither of us really feel like we can go through this again. But we will. We cannot quit.

A year later are we braver, stronger, and more resilient? I don't think so. I know we are more broken, more humbled, and definitely weaker but have more faith believing each day His strength is being perfected in this weakness. Our hope remains.

(Delaney had the most exciting gift this week. Blog post and pictures soon, I promise. Thank you for continuing to pray specifically for our girl. She is hurting.)