I had an appointment with my pc today. I have to say I do love my doc! But I still have this fear when going to the doc they will give me an all access pass to the loony bin. I hear myself talking, and I want to yell at myself "stop stop stop!!!" Thankfully when I look up at my current pc she does not have the eyes bulged/glazed look on her face. She is actually listening and trying to figure it out. She is researching on her laptop right there in her office. She never dismisses me or makes me feel crazy.
Still though I have very few answers. I am going to try some new meds. My "walking on a cloud" moments are gone. I am back to the same symptoms I had before surgery plus some. Yes certain things are better, but many are worse. The steroids I was on last week did give me some relief with my eye pain. This leads her to believe it may be inter cranial pressure. But there is really no good way to test for this. I am waiting to hear back from Brooke's neurosurgeon, and my pc is going to talk with another nsg. I am going to try and sleep in my collar again. Hoping this holds my head completely still so I can sleep. As it is I can't sleep for more than an hour at a time. With my fusion it is impossible to sleep on my tummy(and I am a tummy sleeper). But laying on my back proves to be difficult since the slightest motion one way or the other is painful. And laying on my side is impossible since my shoulder pops out of socket from laying on it. Crazy right? I mean sleeping should not involve this much effort.
I know weather systems definitely cause more problems. Hey don't laugh, I feel the storm in my bones, well ok my joints and head. And I normally know when I step out of bed what kind of day I can expect. Crazy right? So I continue to wait. Hoping I hear something this week from the neurosurgeon. If he finds nothing then it is probably related to my EDS. I will then need to make appointments.
I know I try to make this sound funny, but it is very real. Most days it is hard to even explain where I am at. I hate sounding like I am complaining. I am not. This is where I am at in my life and I accept it. I express myself here to help others who may feel "crazy" to feel a little more "sane". For years I kept quiet because I was so tired of hearing docs say, "I just don't know." Now I am blessed to have docs who may not know but find out. Or docs who specialize in diseases that others do not know much about. I pray as time goes on less people feel crazy and find the answers they need.