I shall rise....

I'm not sure what to write.

As of a couple hours ago, I knew at least the direction I wanted to write.

But then, I discovered I'd received a voice mail. It was from my General Practitioner's office letting me know that I have an appointment at 8:00 AM in the morning with a rheumatology/immunology specialist at the local university hospital.

I was stunned. I had no idea it would be that quick.

I returned the phone call to my GP's office. Typically I get a voice mail and have to leave a message, but not this time. Crystal answered.

"I got your message. I can't go tomorrow morning. I had no idea I'd get in so fast."

"Carol, you have to go. You are meant to have this appointment. Otherwise you are looking at 3 months. They had a cancellation. This appointment is meant for you."

"How about the neurologist? Is there an appointment yet?"

"Right now we are looking at July."

"July?!?"

"Yes, July. But, I am putting together a 60-page fax and sending it to the triage nurse with neurology at Wake to hopefully get you in quicker."

My stomach had butterflies. I was in a state of shock. One would think I'd be thrilled by the news that I could get in as quickly as I could with the one doctor.

"That's why you have to be there tomorrow morning. It is meant to be. It really is like miracle. This never happens."

"Okay, I'll make it work."

I hung up and started dialing Son's number to line up a schedule change so he could cover my early AM business appointment for me. As I was getting ready to dial, he texted me. "Do I still have Hilde in the AM?"

I called Son and got his voice mail. I hung up without leaving a message, our typical phone communication. He'd see on his phone roster that I had called and eventually call back.

I began composing a text in response to Son: "No, not Hilde. But I need your help with something else. Can you..."
My phone rang before I got the text finished. It was Son. Yes, he can cover my morning business appointment.

Yesterday, Wednesday, was a day from emotional hell. It began at 9:30 at a neurologist office for more tests.
All I could do from the time I awoke and through the appointment was cry.

I felt so embarrassed.
I felt desperate.

We finished the test.

"Well, your nerve connectivity tests are normal for the most part. And all you blood work is normal."

I started balling.

"I can't go on like this. I need relief."

I went into my whole reasoning as to why I need to go up on prednisone and then taper down again...just so I can get relief. So I can sleep. So I can move and get some exercise to start building up muscle again. So I don't arise with dread and then dread the night time when I will be awoken with pain. So I can turn a key without it feeling like I have just performed an incredible feat. So I don't have 24/7 pain. I needed a respite and the only thing I knew that could help was prednisone.

"I can't help with that," he replied. "I'm not the prescribing physician for that prescription for you."

Between sniffs and rolling tears, I thanked him.
He released me.
I called my GP's office tears flooding down my cheeks.
She was working Wednesday, but had no openings.

"I have to be worked in today. I cannot continue this way. Is there anyway I can get in?"

"Hold on."

Someone else picked up the phone.

"Can you be here at 1:45?"

"Yes."

We hung up and I called Hubby.

"Do you need me to come with you?" he asked.

"You can do that?"

"Yes," he replied.

I went home to wait for Hubby and count how much prednisone I had.

I started on prednisone in July or August, 2011, after the diagnosis of an idiosyncratic serum-sickness-like response to oral terbinafine. I know prednisone risks well; pred and I are well acquainted and have a love-hate relationship. But, I've been a low dose since August, 2011. Side effects are supposedly less at a low dose. Since December, 2012, I'd been on 2.5 mg per day. But it wasn't doing the trick. At 5 mg or 7 mg, I could function reasonably well. But not at 2.5.

I knew my GP would say no to me going up to 15 mg and tapering down. But maybe she'd agree...just so I could get a break until we knew what to do next. Even if she didn't, maybe I had enough to get me through a month.

While at home I roughly counted how many prednisone pills I had.
Enough to start at 15 mg on Wednesday and then work down to 5 mg or less over the next month.

My appointment an hourish later with my GP was exasperating. At one point I got up angrily with tears streaming down my face to walk out. I could not understand the logic of the risk of steroids for respite compared to what I had been going through: lack of sleep, depression, pain 24/7, inability to function, hopelessness, no clear diagnosis for anyone to treat, inflammation and tenderness in all my limbs and hands and feet.

She had to understand that I could not, in any way shape or form, continue. I had to have a respite from this suffering. Damn it!!!

She acknowledged my pain. She has been all along.

I apologized for my emotional eruptions.

Somewhere in the midst of our discussion or maybe it'd be better described as argument, she brought up tertiary care which we had discussed as a possible plan of action if nothing panned out with a local neurologist, which it hadn't.

She had spoken with the local neurologist from my morning visit. He had suggested acupuncture, which of course I am willing to try. My GP stated I could start the acupuncture. In the meantime, she would get me in with two university doctors, either at Duke or Wake. One appointment with a rheumatologist and another appointment with a neurologist. They could consult with their thoughts and results. It'd probably be a few days before Crystal would be back with me regarding an appointment. They would do their best to get me in ASAP.

I had already made an appointment earlier that day with an integrative doctor. She agreed with my decision on that. The integrative doctor has an opening mid-May.

And now, here I sit staring down a rabbit hole I never, ever, ever, ever wanted to go down again. A Carousel of Physicians.
Since May 2011 with the onset of serum sickness: General Practitioner. Rheumatologist. Neurologist. Hand surgeon. Chiropractor.
On the agenda now: Research rheumatologist. Acupuncturist. Research neurologist. Integrative MD.

Carol, maybe it won't be a rabbit hole or a carousel. Maybe you won't have to get on the merry-go-round. Calm your heart. Address and clarify your fears. Let the doctor know your fears. You have more wisdom now, about maneuvering the medical politics, about your body, about your say. Remember that, Carol. Stay calm.

I started the 15 mg on Wednesday.

Placebo effect or not, I'm already feeling relief.

I looked up information on the web about the research doctor I see tomorrow.
He looks nice.
His reputation is good.
His knowledge appears impressive and open to new ideas.
He's got a few decades of research and healing.
He better be a good listener.

Still, I cry.

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