Adventure in the Waiting Game

I saw my new doctor two weeks ago. It was devastating. She hardly said words to me, and when I asked for more information about my MRI results, she led me to check out. Never to be seen again. There is some, it’s not good news, I guess. There’s some news.

I received a call from the neurologist’s office. I was scheduled to see a general neurologist, but he looked at my MRI results and symptoms and recommended me to the Multiple Sclerosis specialist. I know that doesn’t mean that’s what it is, but it definitely means I’m heading toward some answers. Which is pretty encouraging. I feel good that I’m getting a real answer, or that I’m on my way to one. I’m scared that this is what the answer is going to be. But I’m hopeful to finally be in the direction of help. Unfortunately, I have to wait now until December 8, instead of November 18.

It’s a terrible feeling when your mind is betraying you. A mind I had, mostly, come to trust. I have, usually, an impeccable memory. But now I feel like I’m floundering to remember the simplest tasks and words. Last night, and this I guess is big news too, I sucked it up, put my fear aside, and went to a worship service at the Salvation Army. It had its set back, but I’m glad I went. Standing by a dear friend, with a dear friend behind me. It’s true about being protected on all sides. Because there was someone there that makes me feel unsafe, and I didn’t give it a second thought. I mean, I bolted out of there when it was over, but still. It’s a step. But my hands were shaking the entire service. My hands clutched the seat back in front of me. For balance and to steady my hands. But ultimately something deeper was revived.

What really scares me about all of this is the being alone. I know that I am surrounded by people who love and support me. The collection of cereal I’m still wading through is proof of that. The encouragement. The prayers. I know I’m not alone. But I am physically on my own most days. I like living alone. I prefer it, but some days I get scared. And not just because choking to death is an actual fear of mine. Long before I’d started watching 30 Rock.¬†

But now there are new factors. Like trying to get out of bed and having a migraine so crushing I collapse to the floor, where I stayed for a couple of hours. Like when I forget how to get somewhere, but know I have to get there in my car, which I may or may not remember that I’m driving. When I’m scared to death of how the future looks and don’t have any of my dearest friends right next to me or down the hall anymore.

I find myself trying to stay too busy. Because I don’t want to be alone to think about things. I’m scared to. But then I find myself playing a part. I feel so far from myself. No. That’s not true. I feel dishonest. I feel like part of me is hidden away. I assume a lot about what people are looking for or expecting of me. That I think I’m supposed to appear fine all of the time. That I think I’m supposed to have it all together. That I’m supposed to be bubbly and excited about every person I see. **Spoiler alert** I’m not. Sure, that’s part of me. But if I could be sincere about how I feel all of the time it would be simultaneous and constant screaming paired with sobbing, which I’ve found, people don’t love for you to do. Life feels tense everywhere. I have to be upbeat or super approachable or helpful or friendly, and I’m not saying I can’t be those things. I can. I have been. Part of me is. But I’m just so damn scared of fading away. Of being rendered useless. Of spending the rest of my life on my own, because if I feel like a burden now, it’s only going to get worse. And that truly terrifies me.

I didn’t realize just how proud I am of my mind until I started to watch it fade away. I don’t know how people survived this way without things to remind them. The notes I carry around in my person or pockets. The list of reminders set in my phone. The things I just keep repeating to myself. I’m still not doing great with locking my door. I can’t seem to get that one to click. (you’re welcome).


Adventure in Best Practices 

  A thing I have to do every night now is this. I have to take a picture of my door, so that I can remember that it’s locked. I have dozens of pictures of this locked door on my phone in my deleted folder. I delete it every morning, so I don’t trick myself. I could easily trick myself. I’m sure there’s a simple compulsive behavior tied to the night I know I locked it, and still woke to find it unlocked the next day. But mostly I do it because I simply can’t remember anymore. I was checking 5-10 times a night before bed, which I’m sure annoyed my downstairs neighbors every time I walked up and down the creaky stairs. And still I’d get up, restless at 2 in the morning completely unsure if I remembered to lock it. I simply can’t remember. And that terrifies me. 

My MRI is Monday the 12th. I found a new doctor, and I meet her the 15th. I couldn’t get in to see a neuropsychologist until November 18, but steps are being made. 

In the meantime, I photograph my door. I chant to myself where my keys are. And lately I’ve been using a tens unit and icing my back and shoulders just to be able to stand each day. Nearly every day at lunch and right before bed I cry for a solid half hour. 

Today I cried when I called Lutheran medical group to find a new doctor and the lady yelled at me when her phone made me sound muffled. It was fine when I heard the hold message. It was a mess by the time I got transferred to her rude ass. So I hung up and sobbed. I called back immediately and sat in my hallway holding and crying for 20 minutes before I gave up. My new doctor is associated with neither hospital network in town. This is good news to me. 

I’m starting to feel like Guy Pearce in Memento. “I guess I’ve already told you about my condition.”

Adventure in Where Is the Damn Cereal Aisle

Guess who doesn’t have Lyme Disease! Me. Duh. But no one really thought I did. But now it’s confirmed. 

Yesterday, I was getting the most groceries for the least dollars. I only grabbed a basket. It was a mistake. I needed milk and toilet paper. That was future Hayley’s problem. I had a list. I have to have a list now. I was at the end of the trip. I had my toilet paper. I had my milk. CEREAL. It wasn’t on my list. But I saw it on a sign and needed it. Then. I forgot where I saw the sign. I walked by every aisle. I didn’t see it. I turned. “Cereal.” It’s right there. On the sign. I adjusted my basket. I forgot where I saw the sign. I walked by every aisle. I read the signs. No cereal. Where is cereal? “Cereal.”  I walked toward the sign. I dropped the toilet paper. I picked up the toilet paper.  What was I going to get? Where’s the cereal? This happened maybe two more times. It lasted over three minutes. Finally, I walked into the soup aisle. Sat on the floor. And cried. For a while. I picked up my basket, milk, and toilet paper. I went to the register with tears all over my face and shirt. The blonde teenage boy tried not to stare. He rang me up. I paid. “ILIKEYOURHAIR!” He shouted as I walked away. “Thanks,” I said as I started to cry again. I got in the car and drove home. I dropped my groceries on the kitchen floor. I sprawled out on the kitchen floor and cried. Amidst the cereal-less groceries. 

Adventure in Actually Losing It

Let’s talk a minute about doctors, patience, trust, an accident, and an increasingly failing brain.

**Spoiler alert: it’s going to take more than a minute**

Let’s start where it feels like it started, though I’m learning maybe it’s been happening for a while. And, yeah, I could look back to see if I’ve told the whole tale before, but I’m not going to.

In May I was helping some good friends move into the house they’re renting. The house was left with a lot of things in it, deliberately. One of those things was a razor scooter. You remember being 10? Me too. Well, my friend dared me to go down his driveway faster than he did. Now here’s the key. I didn’t see him go down the driveway. I only saw him stop. I only learned later he didn’t go very far up the driveway in the first place. A very steep driveway. I told him, “No. I’ll break my face.” “I know,” he said, “but I dared you.” “You’re right.” I grabbed the scooter and goofy ran up to the top of the driveway. And then my greatest failing came. I pushed off. And immediately realized I’m heading for the moving truck. I don’t know how to stop. I should aim for the grass. How do you aim with this thing? HOW DO YOU STOP?! I tried to stop. Flash forward to me laughing getting up from the ground. One friend said, “Your shoulder is wrong.” The other “your elbow is not lookin’ good.” “Is my head bleeding?” I started to feel woozy. We went inside. I was handed some Cheez-its when it was learned I hadn’t eaten, and we were off to the hospital. Each curve of the roundabout budging my shoulder.

I didn’t cry. That’s important. I didn’t cry until the PA said “we don’t really do anything for collarbones.” That’s when I cried. Because my shoulder was next to my neck. They had to do something. I also remember this conversation. “Are you dizzy?” “Yeah. I mean, my shoulder is next to my face, so.” “Blurred vision.” “No.” But I thought “Who could tell? It’s blinding pain.” “Well, you’re not concussed.” Blood on my temple. X-ray after x-ray. Of my shoulder. From above. Behind. head on. Slightly angled. My elbow. Let’s move that around a bunch, especially if it’ll move that bone in my chest a bit more. That’ll be good. A sling. Out the door. My favorite sports bra ruined. The only one that I can wear to run. Coincidentally, the only bra I’ve ever owned that didn’t add any pressure to my collarbone.

A few days later they did do something about my collarbone. They knocked me clean out and cut into my muscle. Fastened metal to bone. Five screws across. 7 inch incision Dissolving sutures. Several weeks sleeping in a recliner. At my parents house. The cat and I in my old bedroom. A lot of Murder, She Wrote. A lot of wanting to grow up to be Jessica Fletcher. Angela Lansbury as a secondary life goal. But neither one ever with a broken collarbone. I’m already behind a step. Buzzing social lives at 60. Crying in my chair, hiding my tattoos from my grandparents. Left alone with my grandpa while he prays for me. Still crying. Quietly.

A month later, I’m getting eyeglasses on the cheap, because that blurry vision is finally here, and it’s not leaving. Worse at night. Worse when I’m driving. Motion makes everything worse.

Fast forward to last Monday driving down Parnell. Coming around a curve and realizing just in time that, “Oh yeah! I’m driving. That’s a utility pole. That’s a 9-year-old boy. And I’m in control of this car that needs to be further from the sidewalk.” I forgot. I forgot I was driving.

At work I’m stuttering on the phone. And forgetting sentences. Forgetting that I’ve just said things. We’ve all done it. But not with this increasing frequency. Stuttering for minutes at a time. Unable to shake it. Forgetting words. Forgetting what they are, but being completely unable to find a suitable replacement and just move on. Nope. I’m just stuck. Until I find the word. Not just in speaking. In writing. In thinking. In my very own insides. If I can’t find the word, I can’t move on. In some instances I can’t move. Because all of my processors are shooting and firing to find that one stupid word. Release. Release. Release. The word is release. Type it and go.

Thursday. The doctor. The quacktor. The most impatient woman on the planet. Let me say the nurse was concerned. I told her everything. She wrote it down. With her hand and a pen and paper. She didn’t use the computer. She looked me in the face. She left the room, and I cried some more. My friend waiting in the lobby. Patiently. Kindly. Undeservingly.

Enter the cruelest “care”giver. Each symptom met with eyeroll or sarcasm. Each symptom met with distraction. Never looking me in the eye. Never really looking at me at all. I knew this would happened. I’d stammered through it a dozen times the night before as I panicked. Every intention of walking out the damn door when she got this shitty to someone who’d taken time off work to pay her money for her to be a jerk. I must be lying. I’m a liar. All sexual assault victims are. That’s why the authorities never hear us. Why would a doctor about anything? This is a problem we all face. Never feeling heard or believed.

“Has anything happened to you in the last 6 months that could contribute?”
“Other than bashing my head on the cement when I fell?”
“When did that happen?”
“Five months ago. It’s on my chart.”
“I see you broke your clavicle.”
“And I hit my head. You don’t think a fall hard enough to sever a bone in two with a knock to the head is enough?”
“Your symptoms don’t make sense. It’s too long for you to still be concussed. And it says here you weren’t.”
“They never checked!”
“Says your neck was fine.”
“They never checked that either. I didn’t want to move it, because then my bone halves shifted.”
“It’s not a concussion. It’s not anything. At all.”
“So at 28 my brain is just failing?!”
“Then it’s something. AT ALL.”
silence. She’s not believing me. Alright, Hayj, it’s now or never. Get up. Leave. Find a new doctor now. Talk to that nurse again. Find someone. Scream. SOMEONE HEAR ME!
No. I just started crying.
With rolling eyes “Fine. I guess we could do a blood test to test your sugars. Not to be mean,” her lips purse. Her mouth looks like an anus as it doesn’t say, “But you have put on some weight so you’ve got diabetes.”
tears streaming
“We’ll try (SHE SAID TRY) to schedule you an MRI. And maybe you should see a neuropsychologist.”

I text my friend in the lobby. I text my friend in Chicago. New Jersey. The 07. I cry. I wait. I wait for 10 more minutes. A new nurse who has been told I’m dramatic and insane comes in. “You can get a blood test whenever you want. Your MRI is scheduled for the 12th at 7:30. Be there at 7:15. It’s all the way up north. Do you know where it is?” “Yes. This isn’t my first rodeo.” Tears. I’ve stopped the deep gasps for breath. “It takes 3-4 business days for the fax to be processed for the neuropsychologist. So you can’t call until after next Wednesday. But you should wait until after you get the MRI to schedule it. And PHP doesn’t usually cover either of these.” “Can I get the blood work now?” “Yeah.” She rolls her eyes. “Oh and here’s some information about concussions.” She snickers. They’re making fun of me. She wobbles out.

I wait for my blood test. I sit in a scary chair. The lab tech gives no warning as I watch a needle dig under my skin and into the only available vein.

My friend and I walk out. We get in the car. I explain myself. I call my mom. I cry. She tries not to. We curse the name of that stupid, horrible doctor. My friend and I sit in the parking lot of Pizza Hut. I sob into his lap. We go in. Tears all over my face. We’re seated. “The server thinks you did this to me.” “I know. That’s okay.” At least I’m not alone. He’s a good friend. 

I go home and feel sorry for myself. I go to a comedy show to be around my friends. I vaguely describe to my buddy what has happened. He offers a hug that I accept, and almost cry on him. He knows. He hugs me tighter.

I go to an office at work to ask if I can print some checks. Instead they ask how I’m doing. And I’m tired of being polite. I tell them everything. One coworker’s daughter had the same doctor. The doctor put her on Prozac for five years. For what ended up being Crohn’s Disease. Now I’m terrified. They recommend their doctor. They recommend I schedule the neuropsychologist appointment immediately. As soon as I can. Just schedule it for after the MRI. It’s a good suggestion. They offer to go with me to any and all appointments. My eyes get full. I spend the rest of the day excessively and falsely cheery.

It’s all I can think about.

It seems important to document now, because I don’t know how quickly it will get worse. How important it will be to come back with news for that terrible doctor to throw in her face. Because she needs to know how terrible she treats people.

I am crazy, but not about this.

Several people suggest the same condition. Over and over. It’s been my fear all along. I mention it to a few people. Fear and nodding. I never checked the symptoms. Even I thought I was being silly. Last night I checked. It’s a lot of the same ones. I’m not going to let myself self-diagnose and scare myself. But I’m going to bring it up at every appointment. Because the symptoms have been around longer than five months now that I’m really examining it. The shaking, a thing I’ve been doing for ten years. Sudden shaking, in my hands and arms. Fatigue. Chronic pain. Joint pain. Spots, lighted spots. Flashes in my vision. Depression. Bladder issues, sort of always peeing. Muscle spasms. Stuttering. Losing words. Failing memory retention. I won’t say it. I won’t make assumptions. So many things could be happening. Maybe it’s 30 different things. Maybe it’s one. Whatever it is, I’m going to track it. As long as I still can.