I did it. I set up a second opinion appointment following my multiple sclerosis diagnosis about a month ago.
I was so happy, proud to hear my family wanted to go with me, gather around me to hear this “final verdict” (as I’ll refer to it). Because my parents were unable to make the appointment where I was diagnosed, they really wanted to stand by me this second time and learn more about the disease.
So the second opinion date has come and passed… kind of. My dad, mom, James and I all arrived at the neurological office… ready for what lay ahead. I was a little nervous. Okay, very nervous… but also relieved. Now that I’ve been able to do some research, I felt more prepared, able to ask questions that needed answers. I would tell the doctor I think I have some form of insomnia because I can only sleep about four hours during week nights and some weekends. This is where I would ask how insomnia could affect my health and if MS could be caused from not sleeping? My next plan was to find out what other disease are similar to MS or have MS symptoms — Ehlers-Danlos Syndrome (which can turn into MS), Lyme Disease, Acute Disseminated Encephalomyelitis (ADEM for short), Nerve Conduction Velocity (NCV) which deals with peripheral nerve damage, Vitamin B deficiency, Progressive Multifocal Leukoencephalopath which are several long words to say a virus which attacks when you have a weak immune system — There’s a huge list; this just names a few. Also why — what exactly — leads them to be sure I have MS? And if I definitely do, let’s go over treatment options again. How much does it cost? And is it covered by insurance? I’m hearing now it is impossible to get life and health insurance once you have this disease.
Questions, questions. I just want answers. That’s all I ever wanted.
So we went into the office. I signed in. We waiting a few minutes. I got called up. I figured it was to fill out the ‘new patient’ paperwork… but I was wrong.
“Laura?” The secretary questioned me.
“Yes?” I waited for the clipboard, paperwork, and pen I’ve become so accustomed to receiving.
“You had an appointment today?”
“Yes…” I answered, furrowing my eyebrows.
I waited. I have this thing where I hate answering questions when the question-asker already knows the answer. After my pause, she replied, “We don’t have you scheduled for today. Are you sure it wasn’t next Tuesday?”
I hesitated. Next Tuesday? Next Tuesday? “Yes. I’m sure. The woman I talked to specifically said, ‘See you next week,’ and I made this appointment last week. She even confirmed the date… and I wrote it down.'”
The secretary shook her head, silently saying I was wrong. I was positive though. …Then again — Was I? I began to doubt myself.
“I mean, maybe I heard her wrong… or maybe she told me something else… meaning something else… but I could have sworn she said today.”
“Well. You are not scheduled today. I’m seeing your appointment is next Tuesday. Can you come back then?”
I told her I could… but that I really wanted the answers today. I had been preparing for this. I was finally ready. I was basing my treatment, my future off this one appointment. She told me she’d check with my doctor’s nurse to see if they could “squeeze me in.” Squeezing someone in, I knew, never seems to work. And I was right. It didn’t work.
The nurse came out and explained my new doctor had a “full day” and could not squeeze me in. I would have to come back “when my appointment was originally scheduled.”
I left feeling confused, frustrated, hurt, and unimportant. Did I mess up? I didn’t know. I felt lost. My family hugged me, reassured me it was just a few days wait… That it was okay. But it wasn’t. Multiple sclerosis is serious. I’m not saying I was more serious than any of the other patients in that waiting room or ones set to arrive, but all I wanted was a ‘yes’ or ‘no.’ ‘Yes, you have MS’ or ‘No, you don’t.’ A few seconds of this doctor’s time. And I knew she had that answer because she had to look over my files before approving the appointment. Yet she denied me that ability to plan. I could come back next week and ask those prepared questions. But most importantly, I could have left knowing — for sure — in my heart what to believe.
Fast-forward a couple of hours later, I get a call from the neurological office I had left. It was the same secretary who set up my appointment — which PS-I’m not going to name her because the truth is I love her. If it weren’t for her consistent efforts to get my files and constant pushing for her doctors to look at it, I wouldn’t have even been accepted there as a new patient.
“I’m so sorry. I think I messed up. I’m so sorry. It was not your fault at all.”
I told her just what I told y’all — It was okay. She helped more than I can say, and if she ‘messed up,’ I was not mad or bothered because I appreciated all of her help.
“Well, we have another problem though…,” she admitted.
Great. You’d think I’d be prepared for “problems” now. Strangely, I feel less ready.
“I don’t know why the secretary here told you your appointment was next Tuesday. It clearly says — and has said — your doctor would not be available and is out of the office that day. That day is entirely blacked out.”
This aggravates me still. I feel lied to, cheated. I was convinced I truly had an appointment the day I went, and for some reason, there was a mess up — which is fine; things happen. But to look me in the face and tell me I have an appointment — on a date that secretary can clearly see I do not — is unjustifiable. Mainly when it’s not an appointment that can easily be put off. That secretary works in the health business. She works in a business of lives. How dare she cheat my life.
After talking more to the nice secretary on the phone, I learned the next available appointment was a week later. There are no doctors that could see me sooner, but I was placed on the “if anyone cancels” list… as a consolation.
Since then I’ve been waiting. It feels that’s all I do… and here I am again, again, again, and again waiting. I keep telling myself to live life as I did before. Don’t let this stop me from doing things. Nothing is different. So don’t wait. But that’s hard. I’m not saying I’ve altered my life because of waiting. I haven’t… physically. Mentally I have. It’s all I think about. I sleep less (if that’s possible) because of the stress of simply not knowing. And apparently when you stress, MS symptoms worsen… which makes me remind myself to calm down… but that pressure stresses me more. It’s like a ticking clock that will stop soon. I just don’t know how much time was set.
But what luck, right?
James is convinced 2013 will hold very amazing — good — surprises for us. He looks me in the eyes and with the most feeling says, “This year will be great. I really, truly believe that.” Being honest with you on here, I disagree. I don’t tell him that, but I do. Being more honest, I am trying to trick my heart into believing he’s right. I do want to believe him. I do.