Silent Migraine.

Yesterday, I thought I saw a spot in my vision. My stomach went into migraine mode and there was a metallic taste in my throat. I thought for sure I would be seeing the aura any minute now. Especially since I had a migraine last week. Nothing happened. Then, I began to feel my head ache in the same way it aches after a migraine. I had every symptom, except the actual head pain. It was weird.

So weird that I couldn’t stop talking about it. It was almost as I didn’t believe it myself. I kept wondering if I was somehow causing the symptoms without recognizing it. I didn’t trust my own body feeling weird. I needed someone else to tell me that I wasn’t crazy. I felt as though I were trying to convince the mom in my head that this was real. My mom was one of those who didn’t believe me when I first began to be sick. She thought I was just a hypochondriac. In order to help her see how real it was, I brought her to a lupus support group. She never accused me of faking it again.

This is the legacy of alcoholism in my family – the distrust of my own experience and eyes, because of not being believed as a child. It doesn’t help that I was socialized not to pay attention to my own body but to focus on others. I wasn’t allowed to be angry and certainly wasn’t allowed to show it the way my parents did – by raging at others. I was expected to stuff it in. I did not perform well in this regard, which is why I think I came in for so much grief from my parents. They were trying to teach me to get along in the world and I had rejected such a world without really knowing or even knowing why.

So, now when I get ill or feel strange I still feel as though I need to be super-sick even to say anything. I once mentioned how tired I was while my sister-in-law was visiting. She had two kids at that time; one rambunctious and a newborn. My mom in response to my comment flicked her hand in my sister-in-law’s direction with a dismissive comment. Unless you are the worst of anything, you’re not allowed to mention it. That was my mom’s motto. It didn’t help that my mom was super healthy and hardly ever got sick. I don’t think she knew how lucky she was in that regard!

I’m writing this in hopes of dispelling my mom from my head. She doesn’t need to be in there anymore. I do not owe her free space in my head. I am not the person she thought I was or thinks I am now. I do not need to explain my actions to her or anyone. Okay, maybe my husband. But that’s it! Today, I’ll remember that I am a wonderful human being.

Sleep

Sleep has always been very important to me. I once brought my own pillow on a college field trip. I love to sleep. That’s a good thing because having a chronic illness makes sleep so much more important. I have required 10 hours sleep to feel good for longer than I care to remember. If I get less than eight, in addition to being a bad mood, I will feel the effects in my muscles and joints. It’s like having the flu.

You might have guessed that I didn’t sleep well last night. My husband and I began painting a hallway and it was in a sunny spot. I taped the drop cloth to the baseboard but couldn’t paint. Instead, I read to my husband from the shadows while he painted. I told him I could help finish, but it would have to be in the dark. Usually, when I’ve had too much sun, I sleep like a baby I’m so worn out. Yet, there are times when being in the sun too much keeps me from sleeping. This was the case yesterday. I just felt so hot all night – even though the temperature was in the high 60s.

I take a medication that helps with anxiety and sleep. It wasn’t enough last night. I finally resorted to Sominex. I still feel as though I was up all night… It sucks because it makes even easy things so much harder. My brain malfunctions, my body is sore. I just want to do nothing, which is not an option today. Sigh ...

Jury Duty

I received a jury summons several weeks ago. I cannot do jury duty. So, chalk up another plus for lupus patients, I guess. I would love to serve on a jury. I find trials fascinating. Unfortunately, I recognize, too, how corrupt our system is on many levels for Black people. So, maybe it wouldn’t be as interesting now as it would have many years ago. However, I can always be that stubborn person who won’t budge.

 

However, my body limits my ability to participate in this way. The fluorescent lighting might be fine for a day, but an entire week is too much. The county understands, but still wants a note from the doctor. When I lived in Flagstaff, I did not need this. I merely wrote a note describing the problem. My note was pro-jury so maybe that’s why they let it go.

I have been calling my doctor for at least two, maybe three, weeks. I don’t want to check as it might re-irritate me. I have been calling for the last three days and each person tells me the same thing – no response. I was very confused how they could be in the two-story building that houses my doctor’s office and not have more info. It was only today that someone thought to tell me I was talking to a call center somewhere. Ugh.

I was running out of time and was getting ready to just drive over there and talk with the intake people when my husband  demonstrated his genius. He asked, “Why not call and defer it for 90 days and then you’ll have more time.” This is why I married him. When I am all out of patience, he brings it for me. When he needs understanding, I try to do the same. I think I got the better half of this deal though.

But, this episode has got me thinking about doctors and chronically ill people. When I went for care at the U of Chicago as a seminary student, I had a run-in with one doctor that was epic. For me, anyway. During an appointment, I mentioned I hadn’t been to the eye doctor yet. I’m lazy about that. I admit it! It’s my eyesight, right? Her response was to start lecturing me about the dangers and dictating to me what I was going to do. You’re going to do this and you’re going to do that. I stared at her in wonder. I’d heard about these doctors but had been lucky enough to never have one.

The entire time all I could think was, "I’ve been sick way longer than you’ve been a doctor. Who do you think you are?" When she was done, I smiled and asked, “What are you going to do if I don’t?” By pointing out the obvious flaw in her lecture, I kept my cool. She didn’t like that. I don’t remember her response, but I hope she remembered mine. Patients are not just things you push around. We are not here for you, you are here for us. Ideally, we work together.

Today, though, I was the one to lose my cool. It was so frustrating. It felt as though my concerns just didn’t matter. I apologized to the person I was speaking with. I knew she was not at fault. 

Outsourcing services such as this puts an unnecessary layer of management in between the doctor and their patients. In addition, the call center employees are just as helpless as the patient. Now you have two people with no power to effect change. Chronically ill patients do not have the energy or the time to be chasing these things. Adding this extra layer of not-help is disrespectful to patients and their concerns.