Saturday, February 16, 2013
On running and crying and being quiet
One of my favorite roads in the entire world is the George Washington Parkway headed from the beltway into Washington DC. I love winding along the Potomac toward so much history. When Dan and I first met he kept a boat with his brother by the Washington Monument. So many times we drove with early evening sun, perfect air and weightless feelings ready for a night on the water. The most beautiful stretch is across the river from Georgetown where the road snakes alongside the running and bike trail. No matter what life someone lives they are free in motion on this path.
On my trip to Maryland early this month I rode in a taxicab from my appointment with my neurosurgeon in Chevy Chase to Reagan airport. I was exhausted. I was overwhelmed. I was suffering physically. I slumped in the backseat with my body turned awkwardly in my seat so I could look out the window. I saw a woman who appeared to be my age with a lean and strong body moving fluidly through time and space. I wanted to be her. "God, please, just for a moment let me be like that again with a heart pumping blood through beautiful veins and muscle and connective tissue supporting every instinctive step." I was jolted from my prayer by the voice of the driver asking, "What do you do?" I had to think for a moment about what he even meant. "Ummm, I used to be in real estate marketing when I lived here . . . I am a married . . . and a mom . . . and I'm here because I am a patient." Yes, really that is who I am. I'm a sick person. A tear fell down my cheek.
I have been very quiet here on the blog. Sometimes I think if I stop talking about how sick I am it will disappear. I used to preach a "fake it til you make it" kind of message. This is what strong people do, right? I feel like so many of you have a stake in my healing or at least in me getting some better. I just want to talk about all the ways it really is better and not the new ways it is even worse. I cannot seem to share in the same post with nitty gritty details the way it hurts. I have lost the ability to look someone in the face and tell them the truth about all this.
So here's a rundown from most critical to maintenance issues:
1. I have a burning lump growing in my abdomen on the left side where the mass was removed in late August and the large hematoma was removed a week and a half later. It has gotten so bad in the past week I cry. I know it's bad, because I don't cry anymore. Ever. I wonder if I am bleeding internally or if it is just the wicked endo growing something new. I have an appointment on February 28th with the Cleveland Clinic surgeon who removed the endo from my bowels in March of 2011. My local surgeon who performed laparoscopies, my hysterectomy and most recent endometrioma and emergency hematoma surgery won't operate on me any more. I am beyond his experience and have too many risk factors. I can't wait. No pain medication will touch this. It's my body throwing up red flags. I am planning to go to the ER sometime this weekend because Dan wants me to. He doesn't understand why I don't want to rush into getting pictures of what is there. Perhaps they can scan me and tell me what is wrong. Maybe they can give me an hour of pain relief in exchange for me winding through the nauseating triage, health history and gasps and sighs at what a tough road I've traveled. What can they really do though? My mom is gone out of town. The girls are off school Monday. It's just stupid. Yep, I said the "S" word.
2. I have increasing pressure issues. There is nothing that gives me relief when I have an episode. My neurosurgeon wants me to return to Maryland for a therapeutic lumbar puncture and to discuss the possibility of a shunt. Thursday night I thought my head would explode all over my bedroom. I am not sure I can travel to Maryland for my March 14th appointment. The alternative is to find a competent doctor here to do an LP and measure my pressure under imagery because my spine is well, to put it mildly, a mess which makes this riskier than usual. I have also increased my dose of Diamox, a glaucoma drug used in patients with symptoms like mine. It often helps for a few days and then my pressure increases again. I'm not seeing any real relief. The Ohio weather is a constant barometer for my pain.
3. My iron levels are crazy low. Of course there could be lots of "real" reasons for this like an absorption issue which is common with EDS patients, or bleeding somewhere internally or lets say rectal bleeding from a prolapsed rectum. The hematologist in Maryland prescribed a super duper supplement as a last ditch effort, and it caused side effects which in turn made a bleeding issue worse so I am set to see a local hematologist on Tuesday for an infusion. I have to get it to 100 and keep it at 100.
4. I'm already too tired to make any more points but there are plenty. I have a bleeding disorder confirmed by extensive genetic bloodwork. I have an appointment at Cleveland Clinic the morning of February 28th for a platelet flow cytometry which further isolates the granules. I am amazed as I study about this particular MTHFR gene how many things in my medical past are explained by and related to this. I would urge all my EDS friends reading to take the time to see a hematologist who understands EDS and the related bleeding and clotting disorders. If you are young and plan to try to have children this is particularly important. It could save you much grief from multiple miscarriages and trauma to the baby and sac from bleeding and clotting. My gynecological history is screaming for someone to diagnose me and still no one thought to do these tests.
5. I will begin wearing a back brace to add stability to my thoracic region and seek to avoid more spine surgery for as long as possible. I will also begin regular physical therapy to try to strengthen this area. I do not do well with PT. Even the gentlest stretching and manipulating send me into a pain spiral. The actual effort it takes to get ready and go to the therapy wipes me out for the entire day.
6. March 1st I will finally see the oh so esteemed cardiologist in Toledo about my POTS. It's been a year and a half since I was placed on his waiting list. I'm hoping he will shed some light on not only the POTS but my other chest pain and symptoms and pectus.
Is this what happens? A writer is reduced to bullet points to tell her story?
Yesterday my girls were off school. I was in crazy abdominal pain and had that horrible "hangover" feeling from the beating my brain took from the pressure the night before. Still, they wanted play dates so badly. We never have people over. They are not invited to others homes much either. I am just not active at school or church. I don't know many of the moms of their friends. I can't offer to pick up and drive days in advance because I have no idea if I will be able. Delaney and Danica are loving and understanding. Our family of four is our special Sanctuary. Not a day goes by one of us doesn't just exclaim how thankful we are for this house and the privilege of living here together. Still, they are both at the age when forming community is important. Dan and I don't really remember how to do this. Yesterday, I really wanted to try. I drove to my doctor for a prescription and to have them copy reports from other doctors. I took Danica to her friend's house for a play date. Delaney and I drove across town to pick up her friend to come here and hang out. Plans changed and Delaney's friend ended up staying here until much later because they were having such fun just hanging out. I got Danica tucked in and Dan was urging me to pack up and head to the hospital. By the time Delaney's friend's mom came to get her I was barely able to form sentences. I think I acted pretty weird at the front door. I hadn't taken any meds yet. I don't treat my pain if I'm with my girls, I have to drive or if other people are here. If you haven't noticed I have a real issue with treating my pain. Ever. I knew I had smiled and acted fine, but I don't think my awkward sentences were real conversation. There is no way to explain to people you have just met how completely broken you are. I watch these ladies work and volunteer and make cupcakes and take each child to their sports activities and attend games and drop off and pick up and have girls night out and Bible studies with their friends, and I did one afternoon of just a taste of that, and I could barely stand.
It's Lent. A season of specific heart searching and surrender to my Savior. I go through the discipline of my devotions and know my heart is lukewarm. I can't circle back in this post to some grand statement of faith or declaration of hope. I want to run. I want to make myself cry not from pain but from my heart and offer my soul ache in lament and nothing comes. Perhaps I need to be quiet a little while longer.
Posted by Monica Kaye at 12:42 PM