Friday, October 12, 2012
When I began writing here well over two years ago the sole intent was to create a place where I could update close family and friends on our journey. I never imagined people from near and far would bookmark and follow and support us the way they have. Over this time I have received many emails asking why I do not monetize my blog, link to ads of products I use or believe in or promote other blogs here increasing my own "traffic". The answer is simple. I have always wanted this to stay a quiet place where candor was the rule, and I could feebly attempt to point to the Hope that remains by Him and through Him and for Him.
I have prayerfully been considering some Team Danica changes. I believe God is making the timing clearer to me through recent answers to prayer for our family, our continued struggle as far as health and long term finances but most of all because I have been moved by the Spirit to share more than I can personally give with others.
The first change I will make is to remove the "DONATE" button on this blog at the end of October. In many ways nothing has changed about how in need we are and how this financial strain will not really end any time soon. Digging out of the humongous hole of debt seems impossible. Truly. Perhaps one of the biggest surprises during all this time is those of you who have never seen our family as a "lost cause" but instead have been God's hands of providing exactly what we needed to make it through over and over again. Never for a moment doubt what a difference you have made and how you have changed our lives.
Some of you have asked and many of you are wondering how in the world are we going to be able to afford the rental payment on our new home. Remember when I asked you to pray about my Social Security Disability application? I think it was one of the hardest posts I've ever had to write, and I've wanted to go delete it more than once. I thought if God answered I would be walking around with a scarlet letter "D" around my neck. The truth is He answered "YES" in record time, and I am not ashamed but instead so grateful I have wanted to shout it from the rooftops. He was making the way of escape all along. My Disability will pay the payment on our home and utilities. Our finances will stay much the same as far as Dan's income and our other expenses. There is no windfall. Once again, just what we need. The hundreds and thousands of dollars of new bills are still coming in, and I file them neatly with the years of others, and we go out to gather manna for today.
The other questions in recent days are, "What do you need for the house?" and "How can we help you with the move?" Today we found out we will not get the keys tomorrow like we thought but rather on Monday. This creates a push for Dan and my dad to get in there Monday night after Dan gets off work and cut strips of the carpet and remove all of it and the pad as well as the tack strips. If you are able and somewhat handy and would like to offer to help with this chore please contact me on facebook or comment here. The installation of the laminate floors is already set for Wednesday and Thursday, and my dad teaches a class on Tuesday night, so really Monday is the only night to get it done. One of the biggest concerns with this home was the flooring. The carpet was original and would definitely make me sick. Dear parents of a childhood friend felt led to help with this expense. The remaining cost has been donated by a local business. Without this love we would have had to wait until we could save enough money or risk me moving to my new "safe" house and not being able to tolerate it or feel even a little healthier there.
New friends we met through Betterment asked us, "What do you need or want?" Oh my, please, do I dare ask for something as big as a dresser or a chest of drawers? Heather and I have not been able to go shopping yet, but I tell you the thought of not having my clothes in baskets and shoved on shelves but having real drawers makes me giddy. I have tried some older thrift dressers and like most everything used they have had a smell that cannot be removed and makes me very ill within minutes of being in the same room with the piece of furniture. This is a huge gift!
We have some painting to do, we need to purchase a washer and dryer, preferably front loading ones we can put on pedestals so I could use them. We need a sofa, something we need to buy because used upholstery is the toughest when it comes to my allergic reactions. Other than those main things the rest will fill in over time. Honestly, if all we had were four nice sleeping bags I think we would be tickled. We are so grateful for the joy and excitement you all feel for us and your desire to be a part of making this house a true home for us. Fingers crossed we will actually move in the weekend of the 27th. Danica and I both have important appointments in Cincinnati earlier that week, so we are really hoping it will be a double celebration for our family.
The second change I plan to make here on the blog is to hire someone to clean up the broken tags and links, organize old posts so they are more navigable and backup our story for a more permanent site change down the road as well as redesign the look while taking this to the real URL and not using Blogger as the publisher. (If you have a suggestion of someone good to work with please send me a note with their information.) I'm thinking spring. It would stay a place for personal reflection, but I will also begin sharing the stories of others who touch our life in some way who need prayer, encouragement, out pouring of love and yes, even financial support. We have long believed great love does translate to miracles. I hope this is a legacy our family will pursue even in the midst of continued suffering.
This brings me to the Little Birdie. God has put the Marx family, friends of friends, on my heart hourly this week. Cat keeps a painfully real blog about the loss and grief of losing their son Owen and now a new pregnancy with a grim diganosis. I will not in any way try to share what is their own story but instead ask you take the time to read at least her most recent post. After you have sat with her words then please circle back to the Little Birdie plea for this family. I've been following this local website since the beginning and am truly inspired by the way they use social media and people telling people to meet needs.
There is great need all around us. I am sometimes consumed by the heart God has given me to DO something to encourage those who are connected to us who are hurting. Yesterday as I made a meal for my dear EDS friend Melinda who is recovering from fusion, I could feel the emotion and prayer and love and sacrifice mixing in with the food. I've blogged about her daughter Brooke, Danica's Chiari friend, her family and our friendship several times before. In recent days it is like I carry Melinda's heart right on my sleeve. I drove on the interstate for the first time in a year out to her house across town. I looked into her tired eyes and the reflection of myself was plain to see. We have walked such similar roads. When I ask her what they might need, and she first says everything is okay, I know she is stalling to tell me the real truth. I know it is gas money for Tim to get to work over an hour away for a twelve hour shift and then drive over an hour home to try to do all the things Melinda cannot. I know the checking account does not have enough for the prescriptions and trips back and forth the Cincinnati and fall clothes for their three growing children. I know they are probably selling on Craigslist anything even remotely of value they might have left to try to keep the lights on. These are things Dan and I have lived. We have been hungry and not told anyone we could not afford a gallon of milk. I have gone without my medication to keep our lights on. Dan actually called in to work once because it was the day before payday, and he had no gas. This is not financial irresponsibility. This is the very real result of hard working people who lost mothers who worked and contributed from day one and then were not able. Are not able. This is the devastation of children being diagnosed with a disorder that required special surgeries far from our homes and continued treatment and monitoring. This is days and weeks turning into months and years of medical collections and no end in sight. Ever.
They are not a "lost cause" anymore than we have been. They are desperately clinging to the faithfulness of God and doing the next hard thing. I would give Melinda the shirt off my back. I would not eat so she could. I would go without pain relief so she could feel just a little better. I lift her heavy heart with such weak hands. I can't do this on my own, but He is able.
The last thing I ever wanted this place to be is didactic. Still, today, I encourage you to look around at someone touching your life who is in need. Can you pray for them? Could you encourage them with words? Perhaps you are able to meet a tangible need that literally gives them the hope to move on. Never underestimate these things. Look for opportunities. If your life is busy and self absorbed set a day of the week aside for intentional kindness. Drops make an ocean. Be God's hands and feet. The joy of intentional giving will overwhelm you, and you may be the most changed of all.
An artist I love has a little hardbound journal titled, One Good Deed a Day. I have a new copy here and would like to give it away to someone who needs a little push in beginning a kindness journey. Please leave a comment here or on the facebook link telling me a little good deed you have been called to that has just not quite come to fruition. I won't be "judging" for a winner this time (way too stressful!), but I will randomly choose from the comments on Sunday night and the sweet journal will be on the way to the winner on Monday.
Now wasn't it refreshing to read an entire post without one mention of my health status or pain? Love you all. Make it a great Friday.
Our Hope remains!
Posted by Monica Kaye at 9:53 AM
Thursday, October 4, 2012
I feel like my posts of late are very informational and not really expressing much of my heart. I have been writing more privately again, and I have also experienced a stronger calling to write with the intent of publishing. The time and energy this takes causes me to pull back here. Still, I want to share with all of you the next steps on the journey you have so faithfully walked with us for so long.
The good news . . . no, the GREAT news, is our house closed today! I will provide all the details on this in a forthcoming post, but won't you give a big praise shout out to an awesome God who has provided us this huge answer to many tears and prayers? On my way home from the doctor this morning I was awed by the sun filtering through the breathtaking colors of freshly turned leaves. I drove up to the house and parked. Even though it was only hours until the bank would accept funds and transfer ownership I just had to pinch myself to even believe this could be happening. I tried to picture life there. Tears fell freely down my cheeks as I closed my eyes to imagine the rays of light I would become intimately acquainted with falling across our bed, in the kitchen, in the foyer or the living room. So many things about having our own home . . . having this home will make very hard things easier, but there is nothing I look forward to more than living in the light!
The bad news is I am really not well. In big and small ways I am suffering, and I just don't know how to move through it. After all this time I still find myself at an utter stand still in the swirling of pain and progressive symptoms and new diagnoses mixed with old thorns in my flesh. The overlapping of so many conditions make finding an interdisciplinary approach to my health almost impossible. My endometriosis is an example of this.
I have suffered since puberty with pelvic pain and gynecological issues. I had several surgeries to remove endometriosis in my twenties and in February, 2009 I had my first surgery with dear Dr. Romero. Fast forward to summer, 2010, when I wrote this:
"I have a long history of endometriosis, pelvic pain, heavy bleeding, cysts, trips to the ER, surgeries, etc. related to my female organs. Our lives have been interrupted over and over by these issues. One of the first major incidents after I met Dan was on the way back from Aruba where we had honeymooned. I had begun having pelvic pain the last day or so of the trip. On the ascent the pressure from the plane burst a cyst. The bloody and embarrasing scene that followed stays etched in my mind. The stewardess gave me some big granny panties to borrow and tried to observe universal precautions and clean up my seat and the bathroom. They put me in the front seat, and when we landed in Atlanta an ambulance rushed to the tarmac to take me to the hospital. Poor Dan was dazed and confused. We missed our connecting flight back to Dulles. I remember him taking pictures of me on his cell phone and the horror of seeing a gunshot victim they wheeled past me while I lay in the hall at Grady Memorial. For better or worse began early in our marriage.
I have so many other stories like this. One Dan likes to tell is how the day after I had a laparoscopy he convinced me to get out of bed, still bleeding heavily and in excrutiating pain from the gases leaving my body through my shoulders, and go out to lunch and car shopping. I sat at Carmax for hours in quiet agony and once Dan had bought a new car I promptly had him take me to the hospital in Leesburg because I was sure I was having a heart attack. He learned that day not to push me when things are bad. He knows I don't get in bed unless I absolutely have to. We have missed countless events, cancelled many plans, ran out of stores or restaurants with me bleeding, and I have curled up in bed suffering many days of our life together. Every time this happens Dan retreats into a strange angry place. I know deep down he is not mad at me. He is just so sad I am hurting again. I don't always take it this way. I am sensitive and cry and make things worse. I ask him what is wrong when it's obvious. He retreats further.
This past Monday I went back to see my GYN. After almost three weeks of continuous bleeding I began having horrible pelvic pain and could feel a large lump. Right before our Iowa trip in May I had the same thing, and Dr. Romero told me we needed to do a hysterectomy. I took 20 days of antibiotic and figured I would have to wait until next year sometime--AFTER Danica's surgery and recovery. Monday he made it very clear the surgery cannot wait. I need to have my uterus out NOW. I began the antibiotic and by Wednesday my right flank was hurting me so badly. Dr. Romero sent me to the hospital, and they found a kidney infection in addition to the uterine infection. So, I am on doxycycline and cipro to clear up the infections. My hysterectomy is scheduled at Mercy on Tuesday, August 31st."
During my hysterectomy Dr. Romero saw and took many photos of this crazy disease infiltrating my bowels. He knew this was beyond his level of expertise and closed me up. I had five weeks to try to heal before heading to Cincinnati for Danica's decompression and fusion. I remember bringing her back here in the wheelchair and us living upstairs with my parents. I remember the crazy pain and physical fights with Danica to keep her from ruining her fusion as she thrashed. I remember the unbearable knifing pain in my bowels. I would be doubled over and crying by the end of each day. In January, 2011, I began seeking treatment at Cleveland Clinic and had surgery in March, 2011 on my bowels. Between my hysterectomy and my bowel surgery I tried a recommended therapy of Lupron shots. At the time I was suffering from many of my Ehlers Danlos and Chiari symptoms, but I did not have a diagnosis. I did know instantly the shots were going to ruin me. My joints and connective tissue hurt more than they ever had. I felt like every part of my body was falling apart. It's only in the past year I have learned the strong connection between EDS and endometriosis and just in the last weeks I have come to understand any treatment that completely stops all my hormones may truly help control the endo from growing and spreading, but it also saps every bit of collagen I might have or be making and send me into a spiral of increased pain and disability.
I am also learning my slow wound healing, the large hematoma forming following the first surgery in early September to remove an abdominal ednometrioma and overall horrible response to pain treatment is also due to comorbid conditions related to my EDS. Today I sat in my surgeon's office, and I heard him say the same things again. He needs to refer me. I really need Lupron, but it may do more harm than good. The CT they took before the surgery for the hematoma showed a nodule and surrounding static on the left side where I am now having the most intense pain but also new growth on the right side. Actually, it was so new it had not shown on the CT several weeks prior. This is what happens. If you go in to remove a large mass of disease that has infiltrated an organ or abdominal tissue the cells you can't get scatter and find a new place to settle in. Have I mentioned how insidious and ugly this is?
I am exhausted. Dan worked all day, and swooped home just in time to take Danica to my brother Mirel's wedding rehearsal, because she will be a flower girl tomorrow night. None of us made it to the dinner tonight. He brought her home, so I could get her in bed, and then he headed back out to the grocery store. In the mean time I subluxed my toe just walking. It's swollen and literally the bone is sticking out of the back. (I hate EDS.) I tried to carry laundry up the stairs to help Dan, because he does everything. My gut feels even more busted. I cried moving clothes from the washer to the dryer. It's back breaking. I force myself, because I need to prove something. Dan came home. I wanted to talk about all these decisions facing me with my health. He wanted to talk about timelines for moving. I want to be excited about the house, but I can't. I just hurt too much. I lashed out. We were on completely different pages. I just need to get through tomorrow. This goes over his head completely. I go in Laney's room to tuck her and pray. She prayed for me like she really sees me. I don't know why this surprises me when it happens, because I know her heart for me is real even though she has to hide it to cope in her ten year old world. I cried some more. I came out and Dan was folding towels. I wanted to apologize but now he has disappeared. Saying you're sorry only means something if you can change it. I can't. The mean, yes. The frustrated, soul sapping suffering I wear like skin, no.
Will you please pray for our marriage and family and my body tonight? I need great wisdom and strength to find the right team of doctors to help me with these latest challenges. Dan needs grace to move through his days and nights as a caregiver to a very sick woman and also the one who does everything day to day for our family. Please pray for my Laney's heart and Danica's spirit. Please pray we will have the courage to KEEP GOING.
Our hope remains!
Posted by Monica Kaye at 10:31 PM