Can You Describe It To Me?

This week I’m getting ready to attend the 14th National Conference on Hydrocephalus (http://www.hydrocephalusconference.org/conference-information/conference-fees/) that is happening right here in Minneapolis. I’ve got my t-shirts ready. I’ve got my binder of medical history ready. I’ve got my boyfriend ready. I’ve got my transportation ready. I’ve got the hashtag for Twitter ready (#HACON2016). I’m getting mentally prepared to be upright for 9 or 10 hours for three days in a row (only about three hours for the fourth day because everyone is flying home Sunday). It’s going to be really, really tough, physically and emotionally. I just don’t know what to expect but I’m trying to prepare for every variable.

I’m starting the conference by meeting my attorney for the first time because he’s about five blocks away. He doesn’t know that if I detect laziness from him, or a “can’t do” attitude, I will kick him to the curb. At this point, I cannot be the only person fighting for me. I don’t know if actually seeing me and my physical challenges will change his attitude, but he has not been impressive over the phone so far. I keep getting flashes of Boss Hogg a la “Dukes of Hazzard,” all oily, fat fingers and labored breathing. (I realize I’m being very harsh and am one step closer to Hell. Maybe I’ll see you there?)

Then I’ve got to figure out how to be succinct. My t-shirts do half the battle for me. The weather we are having is both a blessing and a curse for me, because if anyone sees me outside, they will witness me at my worst – my face will be almost completely paralyzed, so that means my eyelids will be mostly closed. However, air conditioning helps with temperature, pressure and humidity, so it will take longer for the pressure to build when I’m inside. When it’s bad, I want to die. It’s not an exaggeration. I have trouble explaining it. It’s not a headache. I associate headaches with dull or shooting or throbbing pain; this is more like my brain is being suffocated and crushed by an elephant sitting on it while my head is submerged underwater. But how can I explain that without it sounding like an outrageous exaggeration? It’s not like I keep elephants in my back pockets to demonstrate to others on the spot what is happening with my body for times like these.

I’m also dealing with my left shoulder and right hip giving me loads of trouble. I babysat my nephews Sunday night while my sister and her husband attended a concert, and I had to block a body shot from my 7-year-old nephew, which made me nearly weep with the pain it stirred up in my shoulder. It hasn’t stopped since. I knew my physical therapist would ask for a number to rate it today. I struggle with the pain scale, because as I pointed out to a fellow blogger, my “7” is someone else’s “21.” My PCP thought I was dealing with an inflamed tendon, but since therapy has not been a steady upward improvement, I may in fact be dealing with tears in the tendons and/or ligaments in my shoulder for laying on it for the first three years of shunt surgeries being done on the center and right side of my body. I’ve got an appointment with an orthopedic doc who only specializes in shoulders a week from today.

But even my crying “10” isn’t my real “10.” I would say that my worst pain has been when the CSF has been overdraining – both after my very first surgery, and then for almost all of 2014 when I had a leak in my shunt but my doctor wouldn’t operate because he wanted to find out which parts I was allergic to. Almost every time I got up, I cried. It really did feel like I was being beaten. I know it’s because my brain was coming to rest on my cranial bones. What would be worse? Read my fellow blogger’s description of her “10.” http://www.thehurtblogger.com/post/15492551756/evaluating-the-1-10-pain-scale
Now if you’ll excuse me, I’ve got to try to track down a reduced-rate or free dental clinic that will do three crowns for me. I can’t chew on the left side of my face because I’ve been in so much pain that I’ve been clamping down with my jaw in my sleep and I cracked three teeth on my left side.

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