Tuesday, November 27, 2012
A bold prayer for tonight. Mercy. Grace. Please.
Most of you would be more entertained to read the MANY drafts I've written I don't post here. I'm finding increasingly what I type doesn't make the cut. Some I'm saving for the day I'm brave enough to speak ALL the truth and the rest is my reality slanted by the amount of pain I'm in so it doesn't come across as speaking "life." I know people tire of lament. Some entries just paint me in a horrible light like the one I wrote about our Christmas decorating fiasco on Saturday. Yes, I ended up SCREAMING and threatening to throw the tree out in the front yard. Dan and the girls didn't flinch. Nothing about it was peace or joy or goodwill, but we will laugh about it for years I'm sure. I quit reading most blogs months and months ago because I felt like the influx of "diarrhea of thought" was too much for me to sort through. I've tried not to ever make this a place for my "waste". Many of you who read here also know I use facebook frequently. It is my way of communicating with not only my "real" friends and family but also my extended Chiari and EDS family. I am alone and in bed much of each day, and this little piece of technology helps me feel connected. I am not generally a phone talker. It exhausts me and makes a ringing in my ears. I feel the need to be "okay" for people when I'm not really. This is a double edged sword that cuts deep. I haven't even had my cell phone on for days. I love hand written letters but find the response to them is increasingly rare. Lengthy individual emails seem to be the exception lately as well. The need to let large groups of people who are praying for us and supporting us know important health updates has slowly become the sole purpose of "Team Danica." I like this for now. Telling our story is still important, and it will come in time with some perspective. Until then, I hope you will not interpret my intermittent notes here as a sign I am completely slipping away but rather resting and refocusing.
I am not well. Living in our new home has given me much relief from particularly the environmental reactions I was having in the basement. I do breathe easier here. The laminate floors are probably the biggest help. Without the dust and mold in the carpet I have had not just less pulmonary issues but also less skin mast cell issues. Delaney was asked how I am different since we moved, and her first answer was I'm not always saying "What's that smell?????" Being more in control of my environment helps although I continue to be very sensitive. When the heat comes on I still smell the basement here. Dan cleaned our bathroom Sunday, and the residual smell and exposure to chemicals bothered me for hours. Any outing to the store or someone else's home will also make me sicker. Saturday I walked passed the cinnamon pine cones outside a store and seriously reacted. I am not even sure where a block of time went while inside the store alone. This is frightening for my family and I. I am also having neurological symptoms again. I am twitching. I am twitching a lot. The pressure in my head is the worst it has been since before my decompression and fusion. I have lost bladder control. I feel like something is pushing on my spinal cord. My hands have been going numb. I am in so much all over pain. Oh, and my heart hurts and is racing even mre than it was. The worst part is I truly don't want to move to fix any of it. This is not to say I'm giving up. It's more to say, I'm too tired right now. It hurts too much. I don't know how to help myself anymore.
I was to see Dr. Garcia, the pectus surgeon in Cincinnati, on Thursday and the new geneticist in Cincinnati, Dr. Neilsen, on Friday of this week. I have cancelled both appointments. After the Cleveland Clinic doctor's complete reservations about the Nuss procedure on someone my age with EDS and referral to another surgeon there and confirming Dr. Tinkle will finally begin seeing patients in Chicago in the next few months, I could not justify the unpaid time off for Dan, the cost of the trip or the precious energy it would take. Instead Dan and I will leave Sunday for a Tuesday morning appointment in Maryland with a hematologist I was referred to by my neurosurgeon. This seems like the most important next step since I could not have any new surgery without exploring bleeding issues since my emergency hematoma surgery. I can only make the next step. Because our out of network deductible is so high I need to do this in 2012. I really need to see Dr. Henderson while we are there. As of now I don't have an appointment. I know from my private facebook boards he is swamped with surgeries and patients from all over like usual. These people have waited for so long to see "the wizard." Please could you pray if I am have a little time with him next week God will work it out and if not I would be able to physically move through my symptoms until I can be scanned and have him evaluate. If it is not until next year then that is what will need to happen.
Tonight I looked at Dan through tears and asked him if quitting was an option. Stop the meds. Stop the appointments. Stop the paperwork. Just see what happens. On days like today I feel like none of it is helping anyways. He reminded me I am alive because of my surgeries. He reminded me I cannot sleep without those drugs. I am better than I was. I have to endure. I have to end back up at Hope.
I don't have to raise awareness. I don't have to write a blog. I don't have to defend my disability. I don't have to be hurting myself to prove I'm alive. What if we didn't have one another? What if we didn't have a safe place to say how much this really sucks? What if this really was the end? How do people not believe there is more?
I'm asking you to pray for me tonight. Don't pray for my long future of pain or even for my tomorrow. I'm begging for prayer to get through tonight. I need the comfort of Christ. I need peace. I need rest. I need mercy. I need Grace. My family needs all this too. Just a reprieve. Please God.
Posted by Monica Kaye at 9:09 PM