Sunday, July 29, 2012
I'm lying in bed at a Fairfield Inn about twenty minutes outside Cincinnati. It was the cheapest Marriott Friends and Family rate I could get. It is only good for two nights, and then it goes up to the regular rate because apparently this "high season" in Cincy. The room is clean, but the hotel is in an industrial area and feels icky overall. I wonder how many hotel rooms we have stayed in since all this began. I wonder how many times we've driven to this southern Ohio city. This is my third trip in the last month, and I feel completely flat. The roads between home and here are particularly hard on my body. I am exhausted and in pain before the tough stuff even starts.
I've needed to blog since my last overnight trip here to see the pectus surgeon. Many of you have asked for details, and I apologize for letting the emails and facebook messages slip unanswered. It's been very difficult for me to mentally accept another surgery may be on the horizon. This week is technically considered pre-surgery testing, but I consider it a decision week too. When I met with Dr. Garcia he was definitely looking at my scan and my body related to my symptoms as a candidate for the Nuss procedure. Of all the things he could have focused on he wanted me to leave with two key thoughts. He wanted me to be sure of how painful this surgery is and how long the recovery takes, requiring a mother of young children to have a steady support system who is committed to her healing over the first three to six months. I smiled calmly. I have walked a similar road twice now. I have never been fully prepared for the pain, but I have endured, and I have never been able to plan the support, but it has somehow been there, and my children and husband have made it through.
If you have a stomach for fascinating surgical procedures you can view a video of the Nuss procedure here. I am still not able to make it all the way through. Maybe you can watch and tell me how it ends! My instability adds a complicated layer to any kind of structural surgery. Dr. Garcia has experience with my connective tissue disorder and pectus excavatum. His recommendation would be to leave the aluminum bar(s) in place for five to seven years following the surgery. After looking at my chest CT he explained there are two kinds of pectus excavatum. The majority of photos you will bring up on the internet are deep holes in the sternum seen mostly in adolescent males. My pectus is fairly deep, but it is also an overgrowth of the breast bone, so it is actually causing a wider area of pressure on my heart and lungs.
I have six appointments here beginning tomorrow and ending Friday afternoon. They include physical therapy and occupational therapy with specialists who understand EDS. They will splint my right knee and my wrist and fingers as well as make an informative plan for a local therapist to help them understand my specific limitations and needs. I will have a cardiac MRI and meet with a cardiologist on Wednesday. I will undergo metal allergy testing during the week to determine if the bar used in the procedure would cause any reactions. I will have a pulmonary test to understand the percentage of lung capacity I am functioning with during activity. All of this information will help Dr. Garcia make the best decision about moving forward with the pectus repair.
Danica is here with Dan and I now. She has an appointment tomorrow morning with a special urologist who understands her ongoing bladder/bowel issues and how they may relate to her Chiari. We will finally go over the results of her urodynamics testing and make a plan. My dad will meet Dan half way in Columbus Tuesday afternoon so Danica does not have to stay here all week. These trips are part adventure and part anxiety for her. I am nervous about letting her go back, but I know it is best.
Delaney is in West Virginia with my mom for a fun weekend at my sister's house. We won't see her again until Friday evening. I miss her like crazy. I try to remember all the times we have left her over the years, but I can't do that either. It is so much a part of all of our lives it almost seems normal, but it's not really. It just hurts.
I don't have any bold declaration of faith today. I have a few really great "love" stories to tell. I know I will have some down time this week to try and do them justice. We are still carried by these continuing expressions of care and concern. I marvel anyone is still able to stay and watch much less participate in such active ways to be God's hands to us. If you are reading this now, would you please pray? I know I've asked so many times, but we need lifted up this week. We need higher ground and a firm foundation for the next storm.
Our hope remains.
Posted by Monica Kaye at 5:07 PM
Monday, July 23, 2012
Today I am needing hourly reminders of the reason our Hope remains. I don't have to look much further than August's issue of About magazine lying here on my desk with Danica Jean on the cover. For awhile I had it covered with printed appointment documents for seven appointments in Cincinnati next week, six of which are for me. In the mix of paper is the title to a vehicle gifted to us by far away friends, a paypal donation from a girl who knew my sister, who I've never met face to face but who has loved us like we are her own family and another from a friend who just shared an entire day of his family vacation to come and sit and visit and pray. In this quiet moment in my "nest" chair the evening sun falls across my face and my gnarled fingers as I type these words. Dan has taken the girls on a nature walk. My heart and lungs and broken body won't allow me to join. I feel lament and then a whoosh of gratitude in the same breath. I am finally learning it's okay to carry both. I ache, but it's good. It means I'm alive and there is still great love . . . and miracles all About. (Click on the images below to see the close ups of our amazing kid!)
Posted by Monica Kaye at 9:28 PM
Wednesday, July 18, 2012
Monica asked why I haven't written a blog entry for a long while. I am a very private person and have a "gift" of internalizing almost everything in life. I know how much this place of sharing means to Monica and has meant to so many of you, but I have trouble even reading here most days much less sharing my response to what is happening to us.
Our family is heading into another storm soon. If you haven't heard, Monica found out she has a pectus excavatum. This bone malformation of her chest wall coupled with her EDS is causing her heart and lungs to be crushed. She is seeing a surgeon in Cincinnati on Saturday morning. This time Monica is going for the trifecta surgery award for the 2011-2012 season. If you are keeping track at home she already has brain surgery and cervical fusion in November, 2011 and spinal surgery in March, 2012 on her "achievements" list for the year. Please do not forget all the prior endometriosis surgeries culminating in her hysterectomy in August 2010 and her bowel surgery in March, 2011. Still on the bubble, in my opinion, is hip replacement surgery. Last night I thought I heard Monica opening a bottle of champagne only to understand seconds later that it was her hip joint popping. Yes, it was that loud. No one as wise as I am has been around Monica for as long as I have so making light of the dire situation we face is the only coping mechanism left. Imagine your loved one losing consciousness in front of your eyes not to mention the same "passing out" in front of your children. Also imagine your significant other mentioning almost every hour her pain, headache, nausea, insomnia, lack of appetite, mold, the urgent need to move out of a basement "home," financial distress and, last but not least, talking about the end of her life. (This subject is not used as manipulation of any kind but because she is really that sick and scared.) Monica wrote as a recent Facebook status the simple fact no one could make this stuff up in a million years. Still, here we are surviving through it somehow. Blog readers seem to be in a state of shock managing "Praying" or "Thinking of you" as caring comments to these dark blog posts. I too am at a total lost of words. I have no direction. No answers. I am chained to the front seat of a roller coaster car. The car will not stop, and I already puked during the first ride. Sure, there's that brief moment in the beginning where you are at the highest point, it is all level, and you can enjoy the view after making it through one of the worst slow climbs, but that only lasts a few seconds until all the craziness begins again. This is how I feel everyday and those "first few seconds" are from the time I wake up until the time I leave for work while everyone else is still sleeping. This is the only time I can imagine my healthy family is lying in their comfortable beds and anticipating they will have a good day with laughter and love and no pain.
We've always known our road with Chiari would continue in some form for Danica, and that Monica would probably have some progressive health issues. I just want a break for us all, and I think the timeframe is a calendar year. I want a year free of the profanity in my head, the rage, mind blowing stress, dizzying confusion, broken apathy and yes, BLOG POSTS. I want to brag on Facebook about all the fun things we as a family have done the past 12 months. I want to eat three healthy meals a day and sleep in a bedroom with windows snuggling my wife without hurting her. I want to be the man of the house again. I want to get my hair cut when I want to and not have to ask Monica if we can afford it. I want to watch my wife enjoying her many passions in life. I want to catch my breath. Unfortunately hard life is our reality, and there is no immediate escape. There are no answers. I fall asleep at night walking through "miracle" scenarios hoping if I visualize a home, restored health, Monica's joy on a daily basis, it will in fact appear and then I will be able to really rest.
Don't let the "DNR" tattoo over my heart fool you. I'm a fighter. A survivor. I can take all the sympathy, the charity, the questions, the pain. Every time I walk into a weight room I have pain somewhere (a sign of my age). Pain during the workout. Pain afterward. Rest is critical when weight training. It is almost as important as proper diet. Monica mentioned through tears how badly she needed a vacation the other day. I believe she was referring to one of those 2-3 week vacations almost no one gets to take, most likely at the beach where one can truly rest. The beach holds a special place in our minds as it was the last real peaceful vacation we had as a family. Pictures and video from OBX show a baby Danica barely able to walk with her head so crooked and her face grimaced in pain. Monica looks healthy in those photos, really healthy, and although she was fighting so hard to get a diagnosis for Danica, I know she was happy then and hopeful. Delaney was in her glory searching for shells and taking an off road adventure to see wild horses. Monica and I had a date at her favorite restaurant in Duck. We stood together watching the sun set over the sound so oblivious to the tragedy just ahead. It is the images of 20 month old Danica I cannot bare to watch. They need to be replaced with Danica, Delaney and Monica splashing in the waves and building sand castles. We do need a vacation. I believe it would be almost like a reset button for the last three years.
I think everyone should choose a Bible passage or two as life verses. One of mine is II Corinthians 12:10, "For Christ’s sake I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
I don't actually have a "DNR" tattoo. I do think the above verse in what is called a "holy" font would be my first choice to finally get inked. It would be emblazed on my inner arm bicep area. The other arm would have "endure" in a simple, mechanical font. I have big strong arms and analogous to a stream cutting deep into a mountain, these arms have formed over a long period of time through dedication and perseverance. My arms are getting old and will eventually tire, but they'll always strive to support my family by the grace of my God who promises to take my weakness and make it into strength when I trust Him.
(Thank you to everyone who has been brave enough to ride this far with us. Monica is better with thank you notes and communication, but I am humbled and grateful.)
(Thank you to everyone who has been brave enough to ride this far with us. Monica is better with thank you notes and communication, but I am humbled and grateful.)
Posted by Monica Kaye at 9:22 PM
Saturday, July 14, 2012
It has been a very hard week. I am lying here upstairs in my parent's bed alone. For some reason the air in the basement was especially dank, and I knew this was last chance to sleep on this good mattress and breathe better air before they return tomorrow. Still, I would rather sleep with a spring sticking in my back and my throat closing up near my girls and next to my Dan than on the best bed in the world. I know making this choice may not result in good sleep at all, because I don't adjust well or quickly to new environments and spaces. I need my thread count and the weight of my duvet and the heat radiating from Dan just inches away. I need to hear Danica if she cries out and be there if she comes in during the night with a bad dream. I have gone over a year now sleeping in a bunker where no light is present and no sounds from the outdoors can be heard. I miss the simple lullabies like rain, a car passing, a plane overhead, a cricket chirping . . . all those little things that remind me the world is bigger than my life of pain, and it keeps moving with or without me participating. I miss the way sleeping near a window makes me feel like I could escape if I needed to.
(Excuse my quick writing break to swallow my pills. I am glad Dan doesn't have to watch me dig through my bag of meds and open the bottles one by one and choke them down. I can feel him praying each and every night during this routine. I know he asks God to let me wake up. I have about a half an hour until I get a little drowsy and out of it, so I will press on.)
In addition to my other diagnoses I have a condition called POTS which stands for postural orthostatic tachycardia syndrome. In hindsight I have suffered symptoms of POTS for over a decade, maybe longer, because I remember episodes in college, but for a long time I was told I was having panic attacks. When I found out there was a real name for my chest pain, shortness of breath, dizziness, fainting, brain fog and disorientation, extreme fatigue after minimal exertion and muscle pain and weakness, and it was related or linked to my EDS and also my instability, I was relieved. Dr. Henderson began treating me while I waited on my Dr. Tinkle referral, and then I began taking a cardiac medication which truly has helped. Over the last month I have noticed recurring and worsening symptoms. When I saw Dr. Tinkle in June we tinkered with my medication dose in hopes I could hang out while I still wait to see the cardiac specialist in Toledo, Dr. Grubb.
This past weekend my heart was hurting so badly, and I was so scared I knew I had to get some help. After passing out on Monday Dan made me promise I would call my family doctor on Tuesday morning. She told me I should go to the ER. A friend was over with her children, and I had emailed Dan I needed to go. He got home around lunch, and she graciously drove me. On the way she prayed for me, and I felt a peace going in. The ER doctor was one who travels within the health system, and praise God he knew what POTS and EDS were. This is rare! They took me seriously and treated me with so much respect as a patient. My first fear was a possible blood clot in my leg. They did an ultrasound on my leg and did not find anything. They also did a CT of my chest. I know they were looking for a clot that perhaps had traveled to my lungs. The doctor did not find anything, but because I felt so bad, and we hadn't unearthed anything besides my sticky old POTS, he wanted to admit me. I decided this wasn't wise. He admitted the cardiologist on rounds at the hospital would probably not know much about my condition. I agreed to see my GP on Thursday and packed up. While sitting on the bench outside waiting for Dan and the girls to get me I read through the reports from my visit. I was startled to see "Pectus Excavatum" followed by a Haller index. This didn't mean much to me except I had read about Pectus in relation to Marfan syndrome, something both Danica and I share many characteristics of.
Once I got settled in bed I googled "Pectus Excavatum" and EDS. I learned my Haller index is extreme. I read about how the genetics are often seen in conjunction with connective tissue disorders. I thought about how my sisters had nicknamed me "concave" for many years in my childhood, because I do have a very visible dent in my chest. I also thought about how weak my thoracic spine is now. I thought about how when I lay on my left side in particular I literally feel like my right ribs are so flexible they are squeezing my insides. I always have an increase in symptoms while lying down. This is a double edged sword because I am so exhausted and feel like I have to rest most of the time. In short, my chest is crushing my heart and lungs.
My dear Dr. saw me Thursday and is trying to get me in to see a local cardiologist for an echo and pulmonary functions tests. Dr. Tinkle said I needed to see a surgeon as soon as possible. I have an appointment with Dr. Garcia at Cincinnati Children's on Thursday, August 2nd. He is a general trauma surgeon who has mastered the NUSS procedure and understands EDS in relation to surgerical intervention and healing based on our special needs. The NUSS is brutal surgery. I still have not been able to make it through the video and watch the procedure.
Dan and I don't know what to think or do or how to feel. We just needed more time before another storm. We've had no relaxation. We watch the endless parade of beach photos from our friends pop up on facebook and all the happiness in the world for those you love cannot completely do away with the hurt we feel of missing another summer, especially an extended period of time away from this "life" and sitting in sand and sun and breathing in salt air. It's been just over three months since my last spinal surgery which followed the decompression and fusion surgery by four months. We haven't recovered. We haven't healed. We have been under so much stress trying to figure out our living situation and just getting to a place where I might be able to BREATHE even a little easier and now THIS.
I asked Dan last night how he was really feeling. His word was simple. "Devastated . . . I just thought God would give us a little longer. We aren't ready yet."
My heart hurts. Every breath in . . . and out reminds me something is wrong.
I can't focus on what I need or want right now. I must survive. I have to get this crazy elephant off my chest, find fresh air and a window with some light and SLEEP.
Our faith is calm and still. I don't know what that means. We aren't frantic. We aren't angry. We are just oh so tired.
I haven't finished this story, but I am running out of words tonight. Until next time won't you please pray for my family and I. Please pray we will inhale and exhale the peace that passes understanding and cling to the giver of life. Our hope remains.
Posted by Monica Kaye at 11:24 PM
Monday, July 9, 2012
I have written fifty blog posts in my head the past week or so. I've scribbled plenty of my thoughts on actual pen and paper. I've been believing impossible things in the light and clinging to my tear soaked pillow in the dark. One of the most difficult things about truth telling is when you've said almost everything out loud and suddenly you decide to be quiet for awhile. When you have asked for prayer for just about every desperate need in your life it becomes like a prison to hold a request deep down inside yourself like I have. I have been suffering when I should have been sharing.
One of the things I've wanted to post is a reaction to the Supreme Court's decision on Obamacare. Many people have asked where our family stands on these issues since our lives revolve around health insurance and access to specialized doctors and surgeons and also the financial devastation that occurs when a family has overwhelming long term health care costs. None of this polarizing issue is political for people like us. We have been blessed for Dan to maintain continuous employment during Danica and I's surgeries and treatment. We have health insurance that costs us approximately 19.5% of Dan's income. We still have deductibles, copays and percentages of self pay based on if the providers are in or out of network. If we spent every penny of the rest of Dan's income on our health care bills and prescriptions and travel to our doctors we would not break even. People wonder, even with us living in my parent's basement, how we are making it. The answer is God's provision through YOU. The only kind of socialized medicine that will ever really work is people taking care of other people in their own lives. Family, friends, churches, communities all looking to their right and their left and loving well.
Right before my decompression and fusion in November we received some amazing last minute love that provided directly for our needs. One of these gifts came from my young cousin, Beki, who is a missionary in Peru. She is supported minimally through private donations to a mission board. Her financial sacrifice to us was very meaningful. My aunt Chris and uncle David were able to take a trip to visit her in June and came here last week to get grandma and Anna Mae for a trip to Minnesota. They shared many photos and stories of Beki's ministry there. One of the people they spoke of stood out to me, and I have not been able to forget her. They told me of Gloria, a woman who is completely disabled and lives at the top of a hill in Lima by herself and bedridden. She is dependent on people to bring her food and water and change her diapers. Beki would visit her and use her own money to stop at a little market and buy her food. She would change her diapers and bedding that had many times been left for days. She would show mercy, share hope and deliver grace to this dear one.
I see myself in this story. I could be that woman. It reminds me how the issues we are facing are certainly not just political. What is a life worth? When is a person who is unable to contribute to society because of physical disability a liability to YOU. Who should provide and care for this person? Our lives, our families and our communities are not set up to even support those close to us much less someone we hear of through the grape vine. By God's grace our family has uniquely and lavishly been loved and cared for in a "socialized" way. I can't explain it, because it goes against almost everything we see happening to others in similar situations to ours. The staying power of all of you who read this blog and pray for us and remind us in tangible ways we are still not alone is the most beautiful way to live. I found out recently I was nominated and chosen as a recipient of The Canton Chapter of The Foundation for Community Betterment's fall fundraiser, Rocktoberfest. You may remember Danica was chosen for their 2010 event. Dan and I are both overwhelmed by these people, most of who we barely know, who want to continue to be part of our story and help us keep the faith by meeting very real needs. I will post more about this event in the coming weeks and how you can help and attend so please stay tuned!
My own health remains very difficult. The past few days I have been in bed with severe cardiac symptoms from my POTS and strange vascular issues like a pounding heartbeat in my belly, or my leg or in my head. I have been afraid. Tonight as I got down on my knees to help Danica put her shoes and socks on I could feel the blood pooling in my legs and that familiar cold rush and then blackness come over me. I went down on the ground and Danica rubbed my back. We went over the drill, "If mommy passes out, get sissy and call 911." We have not had any movement in our need to leave the basement living. We have talked at length with others about how we could perhaps eliminate mold in this environment and then keep it dry. We don't see many other options even though my health is worse. Dan said to me tonight as I showed my fear just a little, "You have to DO something." Getting out of bed is my doing something. Moving slowly through a day that requires me to rest after even a simple task is my doing something. I used to feel like I could positively change our situation by sheer energy or will or some kind of action, but I am now completely dependent on hopeful prayer.
This brings me to my request. I need you to pray for the Social Security Disability determination decision being made sometime soon about my case. This application and the process surrounding it is a secret I have kept from you because of the great stigma attached. Despite my long work history and paying into the "system" If I am accepted I would become one of "those people" my conservative friends post about. I would be someone not working and living off money from the government. If I am someday well enough to go to dinner or buy a new pair of shoes or even take a vacation they will assume they have in some way paid for this and it has taken food from their family, shoes from their feet and beach access away from those who work hard enough to deserve it. Our family has never been able to use any government resources before. My decision to apply for this benefit came after encouragement from my counselor and my medical doctor. There is truly no way I could work now. My family needs my contribution. Honestly, this is the only way I see us being able to move from here and attempt to heal and improve some of my issues. I am humbled, but we need prayer this would not drag on through appeals and attorneys. We need prayer that God would work His will through the hearts of those deciding my individual case based on the extensive documentation my doctors have willingly provided to fight for me.
There are days I don't know who I am anymore. A handicapped parking pass and disability application seem so foreign to who I believe I am and all I wish I could do with my life. Once in awhile I find a few objects left from a former life and leave them out to look at them. The shoes in the picture above were important to me. I find it ironic I chose these shoes long before I knew I would be called a zebra. I bought them for a prestigious real estate even on the terrace of the Monaco hotel in DC overlooking the National Portrait Gallery. I have always dressed classic and conservative with my shoes being the only wild card. I wore the perfect red Ann Taylor sheath dress with a choker of pearls. My body was strong and healthy, and I wore lightly bronzed bare legs with zebra heels. I carried the most exquisite Jessica McClintock black silk clutch with a stunning pattern of red, yellow and black beads sewn by hand.
Yesterday, when I felt completely lost in this identity struggle God brought these words from Holly Gerth to me.
We talk about our struggles.
We're friends, fellow travelers on this journey. She keeps repeating a phrase, "I'm the girl who...."
It's the phrase I've heard from the lips of hundreds of women. From my own too.
We face a challenge and redefine ourselves by it.
Here are some I've said:
I'm the girl who has social anxiety.
I'm the girl who has depression.
I'm the girl who can't have children.
Those sentences trap us, limit us, make us believe we are our worst moments.
I clear my throat and whisper quietly into the phone what has set me free...
"That's not who you are, friend, it's where you are right now."
She sighs with relief and says the words that are like candy for my ears, "You need to write about this on your blog." So here we are. Because I need to hear this truth more than once...and maybe you do too.
Your struggle is not your identity.
It's your location at the moment.
If there were spiritual GPS, we could locate your spot in the desert. Imagine you did so with me and I said, "This place is my identity forever." You'd shake your head and say, "You're on your way to the Promised Land! This is just a temporary stop!"
Then you'd remind me...
I'm the girl who is God's daughter.
I'm the girl with strengths placed within me for a purpose.
I'm the girl who's unconditionally loved by Someone who can get me through anything.
Where we are in life changes.
Who we are stays the same wherever we may go.
Where are you today, friend?
And who are you, really?
Where I am, how I feel and my ability to change these things really are superfluous to my WORTH in Him. This is why Beki goes to the jungle this summer to seek out those who need help and hope and saving Grace. This is why my parents travel every summer with the youth from Faith Bible Church to teach a Bible school in Mexico and provide medical clinics to those needing care. This is why Gloria is my new role model as I wiggle around the truth of my identity. In Him, my heart is safe and my life written. Won't you please pray for me as I slip into much different shoes than I once wore?
Posted by Monica Kaye at 11:27 PM