Monthly Archives: April 2016

Doctor’s Shadows

My Botox doctor had shadows for the first time in a while this last time around. I prefer to have shadows. The lectures and their questions give me something to focus on other then my fear of needles and how much the injections hurt. We had two. When they came in the take my medical history I could tell that the female was further along in her training then our cutie. She introduced them both and began drilling me. I started to feel judged. So I started to have fun and misbehaved.Which I have not done since I was kicked out of my second neurologists office.

“Do you keep a journal”  Me: “No. They are depressing data sets that are hard to keep track of. I have decided they are bad for my mental health.” Her: “So you relay on your memory?” Me: “No, I relay on my dysfunctional brain that hurts me daily.”

“What medications do you take?” Me: “Botox and my epilepsy meds.”Her: “Botox is why you are here today.” I thought: Thank you captain obvious. I didn’t know. Her: “So you don’t take anything, no narcotics, rescue drugs, over the counter pain killers?” Me: “Just what the doctor gives me. I don’t like narcotics, my body dislikes them.” Her: “Not even Tylenol?” Me: “No, it would be like taking candy.” Her “What do you do for the pain?” Me: “Normal stuff… Dark room, cry, music, relaxation. The stuff people do when they are resistant to medication.”

 

It was fun and frustrating. Yes I should have been more understanding that she is a student.

The cutie was a lot more interesting and fun. He seemed like he was there to truly learn and not just from the doctor.My personal experience was important. So I was nice. He would interpret her with questions about my pain, coping, and things that are important to me. Questions I didn’t mind answering at all. Questions that could make him a better doctor. I knew he was really listening. Every once in a while his eyes would widen or his jaw slackened. And then he asked the doctor about the medical side and statics related to my answers. It was weird.Something that in my four years of shadows never happened before.

Explaining a migraine to him was weird. It makes me wonder if they knew who they were going to be shadowing.

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My 3 Month Hiatus

Lately I have herd the phrase “grief makes you do weird things” often. I even caught myself saying it to my sister. Our grandma died. My sister was her caretaker. Since the funeral I have been living in my grandma’s house with my sister and niece.

I stopped. Everything I did for my pain management, I stopped. My grandma’s house uses natural light, all the curtains are sheer. I didn’t even have a dark room to go to. I did chores and sat in the sunlit living room everyday waiting for visitors and then for my sister and niece to get home. It hurt tons and I didn’t do a thing to try to manage it for weeks. I only focused on what needed to be done: cleaning, laundry, homework, going through grandma’s things, and listening. If I wasn’t busy I was asleep.

My grandma didn’t approve of the new me. She didn’t understand why I could allow a little bit of pain to affect me. She didn’t believe me when I told her how severe my pain was. She was always upset when a new treatment didn’t work to her standards. But she was the only one allowed to have such opinions. If anyone else voiced anything negative about how I am dealing with my illness she would give them the what for and tell them how it is. My step-grandmother will say very harsh things to me, worse then my grandma ever did. When my step-grandmother said anything in front of grandma there was an old lady cat fight. It was a weird double standard. Under my grandma’s roof I was not allowed to not feel well unless I was physically incapacitated. I could need a nap or some alone time. My grandma told me that I was ok, meaning that I had my pain under control and I was doing tolerably well. So I had to look that way. Even without her there I still feel like I need to look that way. I needed to be fully dressed and doing as much as I could.

The last thing my grandma told me was “I think I understand a little better now, it is okay now for you to be sick.” We were on our way out of the door. I was due to see her in two months. She called me aside to tell me this. I said thank you. I didn’t know what to say. I officially had permission to be ill. I had been fighting so hard and I had improved so much. She didn’t see any of it. Only that ten years had passed and I am still ill. Grandma died three days before I was due for my visit back. I wanted to show her how much I had improved since starting the Botox and my other routines. Since I was going to be there without the rest of the family I thought she would notice that I could sit with her longer and that I don’t fall as often. And that I’ve learned how to pay more attention to what my body is telling me so I can be safer. It is not as bad as ten years ago. But she will never know.

Grief does weird things to people. I learned that grief makes me through everything to the wind and debate the point of diligent pain management routines. It puts me back to square one. I am okay if I look okay. And that is wrong. The entire time I knew it. My grandpa was telling me you look great you must be okay. I knew I wasn’t. When I realized I wasn’t I told him I wasn’t. He responded but you look good.

Denial is shared, encouraged, and contagious. The denial and acceptance curve of our loved ones have a huge impact on our ability to stick to our pain management needs. Empirically knowing I need this to function better is different then being able to do it. Part of being able to do something is having the support of our loved ones and for our loved ones to notice our progress and regressions. But we also don’t need them to exaggerate our progress. I slowed down and started to do some of my crafty things again because my sister made me. She noticed I wasn’t dealing as well as I should have been and slowly pushed me back into my pain management stuff. She started telling me I did not look that great and got me back on my sleep schedule instead of hers.

That was my hiatus. A bit of denial and regression in my pain management skills. But I am getting back on track.

 

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