I have been thinking about writing for awhile but have not been sure how to put into words where we are as a family. I mean I probably could but it would be a novel and it would be listed under horror stories. Ok had to throw in my flare for the dramatic. Honestly most days it is just too hard to type. I fill my moments with schooling the kids, feeding the fam, and getting kids to their activities. This is it! I know...nuts. I barely get dishes or laundry done, and a shower, well I try. By the time Tim gets home I am ready for bed. If the kids do not have an activity, bed is where you will find me.
I am desperate to have some sort of life back. I want to have the energy to comb my hair after I get dressed. Or be able to find a shoe that will go on my very swollen feet. I would love to fix a real dinner for my fam, or have a family game night. We are trying to find some kind of normal in this yucky state. I look forward to laying with Aidan and reading together. I love to watch design shows with Brooke, and cooking shows with Aidan. Snuggling up with Chan and listening to him play on PBS Kids is comforting. Hearing my hubby do the dishes or feeding the kiddos makes me happy I chose him.
Right now there is not much that can be done for the pain I am in. I have a few things going on and nothing is an easy fix. We believe my Ehlers Danlos is acting up. All of my joints and surrounding areas have a horrible burning pain. The only thing I can relate it to is when your leg falls asleep and not the numb part but the burning part right before it wakes up. This is how my joints feel all the time. And my feet and hands are swollen and tight. It makes using them difficult. PT would probably help but right now we just can't afford it. My pain med helps a little. I also am dealing with a very weird headache. I am having an MRI next week to see what is going on. I have a terrible stabbing pain in the back of my neck that sometimes radiates up behind my ear. It is truly maddening to walk around with this pain all the time. You begin to forget things, and just the very job of holding your head up becomes too much. There is a pain med that I can get 10 times per month. Again the extra money is just not there, and I have to drive to the doc to get it. I know this might sound silly, but getting out of PJ's and driving across town would take a ton of extra energy. Beyond that the shot only helps for 12-24 hours.
I am going to see a pain specialist at the Cleveland Clinic after the new year. I also have an appointment with a Doc in Virginia in March. The Doc in NY is still advising for the brain surgery. I just am not sure if I should go this route. I worry the outcome when the outcome from my last surgery was not the greatest. Right now, little steps. It is hard when your body constantly fights against everything you are trying to do. It is also hard to find a balance when you are not sure if you should stay in your home. Our home is also fighting against me with endless stairs, mold, and never knowing what will need patched up next.
It is true you can find the up to every down. You can push through the storms and make it to the sunshine. I have learned though each storm makes our family a little more tired. It takes a few more pep talks to set us straight. And we need to hold to each other a little tighter. We are so blessed by friends who drop off dinner, friends who clean for us, friends who love on our kiddos, friends who keep our heat on, friends who help fill the cupboards, friends who buy us a special lunch, friends who let me take a nap, and friends who pray continually for us. When these blessings happen I am reminded that the next storm will come, and we are not alone as we push through it.