Thursday, October 4, 2012
Good news and bad news
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