Over the past year I have seen some pretty amazing docs. Docs that specialize in their field, and can answer the tough questions I have. And yet, even with these answers I am left with more questions. I look down the road ahead and I wonder how my illnesses will change our lives. How will we ever afford the treatment I need to even lead a semi normal life? How will my kids participate in life like typical kids with a mom who is always ill? How do I remember to schedule everything for myself and my kids? How do I keep fighting with the electric company to be gracious and let the power stay on? Where do I find the strength to just drag myself out of bed in the morning when the pain brings tears to my eyes?
Most likely most of these questions will not ever be answered in the literal sense. But I have learned that simple little things help to make each day a little easier. A prayer sent in an email by a friend lifts my spirits and reminds me I am loved. A friend who struggles as I do giving a little something just to make me smile. A set of parents who never give up on me, and carry me through another day. A sweet friend who leaves little gifts for our fam on the table when she stops by. Encouraging words by others to push onward even in the toughest moments. And so each day I do just that...push onward.
My trip to Cincy was fast but seemed so long. It completely drained me and took 2 days to recuperate. Aidan and I saw our geneticist at Cincy Children's. I leave appointments wishing for more time to listen longer. To learn more about this disease, EDS, that is slowly crippling me. Thankfully he and a few other docs in the nation have taken interest in EDS. They are fighting for us zebras and trying to find ways to make our life more bearable. Still hearing him say we needed to find ways to keep me from a wheelchair for a few more years was sobering. I know most days I want to ask for one...wanting to not put pressure on my joints. But it is hard for me to even admit to him that my body is failing in this way. I was a dancer! I was fit,healthy, and loved to be active. Now it is hard to even walk. My body is changing and I am not even able to exercise to make myself feel better. What is the answer here?
I did learn some interesting things. He told me I need to be in PT. But he wants me to do the first few sessions in Cincy. The Pt place there is actually trained in working with EDS patients. Sadly I am not sure how we would even afford this. He recommended me to see a cardiologist that specializes in POTS and Mast Cell. This doc has at least a year long waiting list. He was glad I had an appointment with Dr Henderson in September. I did not tell him my fear of not being able to pay for the visit. He wants me to see a Behavior Modification Specialist. Although it will get tougher to treat my pain, a BMS may be able to help me learn techniques to manage some of the pain through different techniques. Have no idea if insurance will even allow me to see one of these specialist. He also referred me to a headache doc in Cincy. This doc specializes in EDS type headaches. He did feel like some of my headaches are pressure related to Chiari. But he said the one's that move around may be related to EDS. They have found where these extremely painful headaches are caused by shifting in the skull due to loose joints which cause nerve compression. Sadly there is no way to treat this. Just a really painful headache which must me endured until the nerve is released. Answers which lead to many more questions. But I remain hopeful! These docs are amazing...and they keep fighting to find new answers.
Aidan had a great appointment. Although his EDS causes pain, mostly in shoulder, hip and hands, the doc was hopeful. He felt with some strength training we could build Aidan's muscle tone which would relieve pressure on joints. He suggested swimming and cross country. He did recommend several things to avoid- football, sprinting, soccer, and even basketball. But he did say a fun league for b-ball is ok. He told Aidan to ditch the flip flops. Poor Aidan is struggling with this one. :) The rolling of his ankles is turning his knee which makes his hip sit funny. This causes him pain. Doc wants Aidan to be in PT and OT too. The good news is many boys grow out of EDS in the teen years. So we are hopeful!
All of this is just a piece of the many things I am praying about. This doc mainly focused on my EDS. I still need to work with my Chiari, POTS and Mast Cell. Which are different docs, and more trips. When I think about the traveling, I hold my breath. Just leaning down to pick up a toy is difficult these days. How will I travel? Even though my hubby works very hard, we can't pay our bills. Will we make it? Where do we go when we can't afford to live here anymore? I keep praying. I keep asking these questions, and listening for the answers.
My parents are taking a trip to Colorado to see my grandmother. She is 89! I wanted desperately to go. Just to be able to spend time with her...sit, chat, drink dr pepper, and eat pie. My kids love her, and so wanted to see her. We knew we could not afford the trip. But my parents generously offered to help us with seeing her. Then I had to get past my fear of a 2 1/2 day trip with 8 people in an 8 person van. Would my body even make it? Most likely it will not. I am sure I will need some recuperation days when we arrive. But I am determined to go. It may be the last time I can do something like this. One more time sitting on my grandma's deck, having breakfast....what a blessing! Although I have a broken body at 36, my heart is hopeful. My mind may constantly ask really tough questions, but my spirit is full of joy. If I choose to dwell in the unanswered, I can't enjoy my life in what He has already provided. I continue to trust and remember I am not Home Yet.