Three Month Check Up

This is going to be a sweet and simple post. Just drove to Maryland yesterday and home today. Feeling drained but hopeful! Dr Henderson is awesome! Just wanted to say that, although I really do not like talking politics with him. Would rather we could just stick to the medical stuff. He said my fusion looks great. And from the CT I would completely agree. My neck is so straight! He said it can take a year and half to completely see the full healing from surgery. He encouraged me to continue with PT and making my body stronger. He took one look at my neck and throat and said, "Mast Cell." I knew there was a high chance of the surgery triggering my mast cell again. So now back to getting it under control. The main way is diet. I need to focus on putting the right things into me so I can heal.
Dr Henderson said several times he did not want to see me back for surgery. He told me I will always have pain and my body will continue to "fall apart". The best way to prolong my health is diet, pt, and strengthening my body. Surgery will not be a fix. He feels many of my headaches are caused by my jaw. He showed us how my jaw is slipping all over the place. I knew it was going in and out of socket. It is also doing a type of circular motion. He said this pressure is most likely leading to pain. He wants me to see a specialist for my jaw. He also prescribed a new medication for headaches not caused by this.
He is super hopeful that with working on proper posture, keeping my neck and spine safe, and increasing my strength, my EDS should be managed. And really with EDS that is what one hopes for. Now to get the Mast Cell and POTS under control again. Hooray!!! I love when docs say food and exercise and not surgery! He was speaking my language today!! <3

Dreams

     This post has been a hard one for me to write. I have started and stopped it a hundred times in my mind. I know many pray for us, watch for updates, and want to know how all is going. In the beginning of our journey everything was new. We were learning along with you all. Now I feel like each day is more of the same. The day to day doesn't reveal many new "shockers" but it does become burdensome. I hate sharing burdens. They feel like they are my rocks to pick up and pile in my bag, swinging them onto my back. But burdens are a tricky thing. Too many of them will weigh you down and come out in other parts of your life. Your kids notice you are much more snappy. They in turn become more snappy. This leads to more quarrels...no fighting. And the burdens I wanted tucked away to deal with on my own, spill out into my life.
     I have wanted to update on my surgery. If you see me and ask, you will get my most common response. "It went well! I am recovering much better this time around. And I do not feel like I am carrying a bowling ball on my shoulders anymore!" All of this is true. No lies here, just hidden commentary. Here is what my brain is thinking, "My headaches are not better. In fact most days they are worse. I feel like now that my head is positioned better my lower spine is off. I have terrible cramps in my legs and sometimes they just twitch for no reason. The numbness in my arms and legs is still there, so I must get up at night to walk. It is hard to sleep anyway because my head hurts and no position makes my neck ok. I try to wear my collar to sleep but ever since surgery my throat has been swollen. The collar presses on my throat when I sleep and it is hard to breath. The throat has also led me to choke more on food. Several times the food has become lodged. I need to ask the doc if this is normal. The whooshing sound in my head/ears is more frequent now. It sounds like there is a waterfall in my head. It makes me feel dizzy and sick to my stomach. Sometimes it makes my eyes feel like they are huge and going to pop out of my head."
     None of the things I think feel right to say. When I am cozy in bed, sitting behind my computer I can be honest with myself and others. I have always been able to write how I feel. It is forming that into words that makes me crazy. I do not want it uttered out loud, except to my doc, mama, and possibly closest friend. I think in my brain...to speak it makes it more real. It means yes I am living with this every day and no it is not going away. It is here to stay. Then my mind starts saying, "NO! I will figure this out! I will get better and my life will be completely normal!" I start chasing myself down rabbit holes and right into the Hatter's tea party. I have a seat. I do. But no rabbit chase has helped. And Madness is never an option. So then I swing my mind right back to HOPE. I start planning real life things. Things I can make happen, or at least I think I can. I dream big.
     The problem with dreaming big is not all dreams can or should come true. Sometimes what we yearn for in our life is not what the ultimate plan is for our life. For a very long time now I have lived with this notion God was calling me to something bigger. He needed me to fulfill some crazy check list. And in my heart I felt I must adhere to this calling. If I did not, I was being unfaithful. In my chasing I have found the exact opposite. I have been so focused on what I believed he wanted for my life...I was not truly seeking what I needed...HIM. I realized I was being terribly unfaithful to God, my family, and myself. How was I doing this? I was coveting my neighbor's life. Not in the way you might think. I do not long for more money, a better house, the fun vacation, yes possibly less medical bills. I longed for the 4th, 5th, yes even 6th baby. I thought(dreamed) of kissing little toes and fingers at 2AM. I wanted just one more time to participate in the creation of a life. I thought(dreamed) of a house full of adopted/fostered children. I thought(dreamed) of a farm where we grew our food and loved on our animals. And I truly believed He wanted this all for me too. It was my destiny.
     Please hear my heart...all my friends who are experiencing wonderful lives like I mentioned...I am so very joyful for you!! I never dream with hurtful thoughts. Only thoughts of "WOW we could all be farmer mamas together!" It is not my destiny to follow these dreams. And that is ok. I wrote that and paused. I paused because my heart still longs for it all. I think that is the beautiful part...not tragic. Our minds were created to dream, just not every dream will see fruition. Some dreams will be a quiet memory when we are older. We will pause and think, "wow I had no idea back then the plans you had for me!" And that dream...pause...will make us smile.
     I do not know what the plan is. I am sure my mind will find a 100 new ideas before morning. I do know I will try to pause and listen before leaping. I will travel to Maryland tomorrow for my 3 month check up on Monday. I will be honest with the doc and share what is in my mind(only the logical things of course). I do not know if he will have any answers to offer. Either way I will come home and try very hard to be honest. I will try to put down my burdens and find a way to not carry them alone. This is a forever process. It will not go away and I will need to remind myself to seek out the Hope and not the burdens. To dream big but be thankful for my reality.