I'm propped up here in my bed with my favorite quilt bunched up around me and my sweet Twix burrowed so close to me. She doesn't want to leave my side today even though Dan and the girls are home. It is amazing how dogs are connected to their humans in such a way they know when that person needs extra attention and love. I had to get her to leave my chest so I could write, but she was laying on top of my heart and sniffing and kissing my head. I have known for awhile now she understands when my pain is unbearable. When my endo was growing so bad in my abdomen she would lay across the pain area and sniff. One of the hardest things about thinking of leaving to got to the hospital for surgeries is not having her with me.
I haven't been writing here because I made a pact with myself in the new year to try to step outside my health issues most days and really try to live. My word for the year is "PLAY". I look back at pictures of my former self and see the light in my eyes, the silliness and joy and excitement for living. It has been years now. I have been under a cloud of suffering for too long. It is as if this piece of me that could enjoy even basic pleasures was cut off for good.
I have been seeing a new counselor, and we have been talking about self care and playing. I come from a place of either thinking all this is punishment for sin or just looking ahead to a life beyond this one when I will finally be released from all this. I feel guilt wanting to have my hair done or my hideous feet, which I cannot reach without great pain, given a pedicure or caring for my body in other ways because so much has financially been spent on my health care. She has helped me to realize health care is very different from self care and self care is an important part of being an image bearer of God. This is not selfishness. This is recognizing who you are in God's eyes through Christ. I have never fully understood what I am worth in this light and never connected my physical body to spiritual wellness. Imagine such a disconnect continuing for so long especially when you are seeking healing so desperately.
She gave me a mission. To think of a warm place away from here and go. I planned a trip. It is two weeks from now. I planned to go to Arizona. My sister-in-law would come for a few days, and I would have a few days alone. I would be somewhere sunny. I would rest. I would breathe. I would walk. I would plan some self care. I would eat healthy food. I would pray. I would retreat. I would play. I would be outside. I would enjoy. Just the looking forward to this trip has given me a joyous expectation I forgot could exist.
This past Tuesday, after a day spent at the Canton Museum of Art pouring over the St. John's Illuminated Bible with my Janet, I came home with an awareness of my shunt I haven't had for a long time. There was a storm coming in, and I began to feel the buzzy pressure in my head that grew with each hour and a sharp pain at my shunt site. I could not sleep. School was cancelled the next day for the girls, and I could not get out of bed except to make them a meal and then crawling back to hold my head. Noise, light and movement make it much worse. Danica was affected by the storm too. Her neck was hurting and her other joints, and she spent all day in bed next to me. There is never a day I am bed bound I do not feel guilty about what my kids are missing. I wish they could be out romping in the snow or I could take them to a movie or be up and working a project. No amount of counseling will change this regret and sadness I have when my own health affects my children.
Thursday and Friday my girls were already planned off school. We spent Thursday much like Wednesday. The weather was still so dicey, and I held out hope my shunt was just not keeping up with the demands from the pressure changes. I did finally call my neurosurgeon's office on Thursday afternoon in tears. He was in surgery, but his nurse took notes and talked me through what might be happening. By Friday morning I had spoken to my neurosurgeon, and he suggested I get a scan of my shunt to make sure there were no structural issues. Dan had to leave work at lunch to come home and watch the girls and they drove me to the ER doors and let me out. Oh God, how many times have I been left at the doors of the hospital? I was there for eight hours. We got pictures that confirmed I do not have any disconnects in my shunt or broken pieces, so it is most likely a flow issue. Again, my angel Janet came to be with me. Much like my sister Rochelle, when she is with me I feel so protected and advocated for. She makes me laugh even in pain. She never makes the frustrating situation of an ER and all the waiting and nonsense about her. I never feel like she didn't want to be there. This is a blessing beyond measure because Dan is not good at this role. I am always trying to manage his stress and reaction as well as my own pain and response. We are both so grateful for the times others have stepped in and let him be here with the girls still knowing someone was with me.
Dr. H and his nurse and I talked about the next step. Get the scans. The scheduler would begin getting insurance clearance and by Monday morning I should be on the schedule. He would want to see me preop on in his office on Wednesday and would do a shunt revision surgery on Thursday at a surgery center in Silver Spring. He also wants a flexion/extension MRI while I am there to check on my fusion following my hardware removal. I have looked at flights and hotels. I have planned out in my head how the days might go. More than the pure exhaustion of heading back to do this again, despite knowing how problematic shunts can be and how blessed I am to have had relief these horrible winter months with my first one, I am so worried my trip to Arizona will be spent in some kind of flux instead of peace and rest and play. I didn't plan to be away from my family two weeks in a row. Dan is still not at his six year anniversary date to reload on vacation days. My mom and dad have several trips of their own planned in the coming weeks. My brain is cloudy. I have moments of just plain anger this is happening now followed by the exhaustion of what is before me.
I have been lying here praying for my symptoms to ease enough I could wait for this surgery until after my planned retreat. I have been begging for God to show me what is the best decision in moving forward. I am overwhelmed at thinking tomorrow morning I will have to finalize and then buy tickets and reserve a room and plan transportation and pack all while suffering this crushing pain.
Tomorrow is Dan and I's 13th anniversary. There will not be a candlelight dinner reminiscing about how far we've come. There will be no extra beauty effort on my part to show him I treasure my own body as his own. One flesh. Who would want to be part of this scarred and broken body? This week is Valentine's Day. Once again my girls will be the motherless children at their parties at school. They will get notes written by me left behind to remind them I love them, and I'm sorry I'm not there. Again.
There is no amount of psychology or self care or planning that will make this different or better. I'm asking you all to please pray for me. Pray I will have a sureness about moving forward with the trip to Maryland and revision if that is what I am to do. Pray I might be well enough to still have my retreat in Arizona the next week if only to heal. And would you most of all ask God to be with my husband. Would you ask God to show him how his faithfulness and sacrificial love are a bright light. Would you bring him some measure of joy or play or hope even when I cannot find my way to those things. And pray for my girls. As much as I show them my love however I can and spend time with them in the confines of my home and my bed, I am worried about what they miss. They are desperate for playdates and sledding and invitations to homes where people are laughing and moms are silly and there is planning for something other than another surgery. My Laney is hurting. I see it. We have been trying to go on a mother, daughter shopping date for weeks now, and I have not been able to go because of the weather or how badly I feel. Driving is one of the hardest things for me. I want this day with her. Danica is much like Twix in that she stays closer to me the worse I feel. Her heart understands my pain, and she doesn't make an mechanism to move away from me during these times. She missed her friend's birthday yesterday and has been begging for a playdate with another friend, and I cannot make these things happen. The strength I have to push through and feed them and bathe her and make sure their homework is done is what I can do. I cannot make social things happen. I could not get them to Sunday school this morning. I know they need things, but I can't make it to Target. Dads are awesome but girls want their mom. I need to be able to do this. I worry if they will blame me or love me when they look back at these years. Pray I will use every bit of what I can to love Dan and Delaney and Danica as best I can and God will work on the heart issues.
I must end by reminding each of you that read here how grateful we are for your love and support. Already this year we have seen God moving before us to make a way in the wilderness. Much like the Illuminations I saw for the St. John's Bible, there is always the gold thread of God's presence and loving plan running through even our hardest days. I believe this more than I ever have. I want the story to have some kind of restoration, celebration, land of milk and honey resolution here in this life. It may not come. But the changing of our hearts day by day and the healing of our eyes to really see Him and know Him is preparation for the eventual total healing of my body and our souls forever and ever. This is Grace. Our Hope is built on nothing less!
(Because so many of you have asked. This is what my shunt looks like. It is sewn in below my ribs on the right side of my body. I have a four inch scar where the incision was made to initially place it. I also have a scar on my right side where the tubing was wrapped around and another scar in my lumbar area where the tubing begins in my subarachnoid space. This is an explanation of a lumbar shunt.
The lumbar-peritoneal shunt is inserted between two of the vertebrae in the lumbar region of the spine into the subarachnoid cavity, also known as the subarachnoid space. The subarachnoid cavity is a spongy tissue-filled cavity that surrounds the brain and spinal cord, and this is where cerebrospinal fluid (CSF) is contained. The shunt is placed under the skin and continues around the oblique muscles on one side of the body, and terminates at the peritoneal cavity, a cavity in the abdomen area of the body. Once in place the lumbar-peritoneal shunt is used to drain the excess cerebrospinal fluid from the brain via the Subarachnoid cavity and transport it to the peritoneal cavity, where it is eventually absorbed by the organs and passed out of the body during urination.
The revision of a shunt means to replace or make adjustments to all or part of the shunt, this also means that the location of the shunt may be changed therefore changing the category or type of shunt a patient has. For some patients with shunts, a revision or multiple revisions to the shunt may be required. This can be something minor, such as adjusting the setting on a valve to change the flow level through the valve to replacing a substantial length of the shunt, or even replacing the entire shunt or relocating the shunt route to a different part of the body. For example, it may be required for a patient with a lumbar-peritoneal shunt, if multiple revisions are required or overdrainage is occurring, to have it replaced with a ventriculo-peritoneal shunt (VP shunt).
Shunt revisions are required due to the following complications:
Over drainage
Under drainage
Infection
Blockage or obstruction)
