Have you ever had brain surgery before?

Today I received a paycheck. I haven’t had one of those in two months. I have been keeping my house afloat on $900 in disability payments (and denied the last $450 I was entitled to because the absence management company keeps losing the fax), savings and credit cards.

In two hours I will be leaving to drive over to my hand specialist/orthopedic surgeon about my sprained pinky. Despite the therapy, despite the time that has elapsed, it’s still tender, doesn’t bend all the way and has a rather distorted knuckle. Monday is my first appointment with my cardiologist.

My heart rate has been normal most of this week. But yesterday was a little rough– heart rate variations and fatigue throughout the day. I had a lot of muscular pain in my right hip, which extended into my back and quad, and worked overtime at the Bizzy Hizzy. So, I ate a lot of snacks, took ibuprofen, drank a lot of water, and ate my sorrow in the form of about 2,000 calories of burger, onion rings and blizzard at Dairy Queen.

My boss asked me if anything had changed to cause my discomfort. And as usual, Angel hadn’t changed one thing but several. I had worked hard the day before and perhaps I overdid it, because I had been behind in my numbers. Then, I went to the chiropractor, and when she touched me, it felt different. She often has to do things to my legs I don’t understand, but that right hip often feels like my pelvic bone is at the wrong angle. And when she touched it, the way she does every week, it burned instead of ached.

After the chiropractor, I went to the gym. And Andrew subjected me to leg-and-core day. Because he loves me.

I had a nice dinner after that of kale, potatoes and chicken. And I was in bed by 8 p.m. (Don’t judge me! I wake at 4 a.m.) At a minute or two before 9, I had to use the bathroom. And these days, I can’t take my chances. For some reason, I can’t always hold it. I have some retrolisthesis, and there is some theorizing that it might press on a nerve occasionally that interrupts that signal.

I stumbled from my bed, entered the bathroom, and next thing I knew I was kissing my ceramic tile and my Apple Watch was having a tantrum on my wrist. The Teenager ran up the stairs.

“Mom, are you okay?”

The shower shelf had started to fall off the wall earlier in the day. I had decided to be proactive and I removed it. I set it against the bathroom wall to rehang. In my evening stupor, I did not have my glasses on. The pale silver shelf blended in with the beige tile and I stepped right on the damn thing.

“Mom?” the Teenager said. “Why is your watch freaking out?”

Apple Fall Detection has received some mixed reviews. But this time it nailed it. My watch progressively buzzed until I looked at the screen and responded to it.

“It looks like you have taken a hard fall.”

And there were two options. “I’m okay.” And a big red emergency button. I hit “I’m okay.”

That’s how I went from 50 days without a fall to one. Sigh.

In the last of the medical update, I’ve been receiving a lot of repeated phone calls that never leave messages. So, I answered one yesterday that looked like an important phone number. And it was 11:22, so close enough to work lunch that I could step off the floor if I needed to,

It was the neurosurgeon. My neurologist had told me she was going to refer me to neurovascular to have my aneurysm checked. Apparently, they call you and ask your symptoms so the doctor can decide if your head is going to explode and if he needs to see you tomorrow versus in a couple months. So, I answered her questions.

“Have you ever had brain surgery before?”

Oh, I don’t intend to have brain surgery at all, I think. “No.”

“Do you have any allergies to the dye used in MRIs or CTs?”

“No,” I said. “I just had my first CT with contrast and tolerated the dye well. But I have a tooth implant, so an MRI might be out of the question.”

(Which is a shame as I would love to see my brain via an fMRI.)

Questions about my symptoms. Headaches? Yes. Vision trouble? Not really. Weak arms? No. But I have a tingling pinky no one can explain. Lightheadedness or dizziness? Yes, but we attributed that to low blood pressure and side effects of the beta blocker. Slurring words? Not slurring, but completely losing. But I have a history of anemia. Incontinence? Lately, yes.

“Do you have difficulty walking?”

I chuckled. “That’s loaded question. I have cerebral palsy.”

“Oh, let me write that down for the doctor.”

“Spastic diplegia if you want to be specific,” I told her.

“When did your symptoms start?”

“Well…”

I told her they found the aneurysm after a CT scan meant to check if blood wasn’t getting to my brain properly after my second fall in March landed me in the hospital. And here we are.

I need this weekend. Badly. And I’ll be taking Nan, my blind friend the space nerd, to Lehigh Valley Space Fest on Sunday.

Physical Therapy Gone Wicked

Today was my third visit to St. Luke’s Physical Therapy at Anderson Campus.

I love them. I love the impact of physical therapy.

I am probably the perfect candidate to be in physical therapy for the rest of my life.

Today, though, my physical therapist introduced some strength building exercises that I would classify as difficult and a little wicked, in the best way possible.

My homework is to keep stretching my back opposite the direction of my retrolisthesis, especially by doing yoga— cobra pose 50 times a day.

Something is definitely working, so we’ll credit PT.

But my session today started on a treadmill which is always a challenge for me. It requires concentration for me. I have to think about each step and try to walk evenly and correctly.

After an eight minute warm-up, we did some Cobra pose/press-ups, some lifts (the kind where my belly is on the table and I bend my knee at a 90 degree angle and lift my leg from the table using the hip area) and today he slapped on ankle weights, some bridges, some one legged bridges, and a bridge where I hold and lift each leg up (one at a time of course) while keeping my hips up, and some hip stretches moving my leg while standing on the cushion.

It was an intense 30 minutes. So I treated myself to a free holiday blend coffee at Dunkin.

Now, I had a chiropractor appointment with Nicole Jensen of Back in Line Chiropractic and Wellness Center next. But I had enough time to run home and use the bathroom.

And feeling spry I hopped to the curb, fell, scraped up my hands and a knee, and apparently flung my phone half way across the neighbor’s yard.

But I arrived at the chiropractor on time and learned that not only is Nicole liking my progress, but she also is on chapter three of my book, Manipulations.

All in all, a good start to the middle of my weekend.

The Physical Therapy Phone Calls

If you’re a regular in my portion of the universe, you probably know I’m struggling with some issues that might be described as middle-age or might be complications of a life with cerebral palsy.

I have been talking about this journey more in recent days but certainly rather frequently in the last six months or so.

Today, I finished talking to the last member of my medical team about my plan for my health and my future. That person was my psychologist. And it sounds like he approved of my plan.

So having spoken with everyone— checking their professional opinions against my fear of an emotional response to my disability— I sent an email to my physician outlining my questions and my plan.

I had an email back within the hour from my physician saying I could set up physical therapy and that I should come into the office for a follow up this Thursday.

My doctor’s office had no preference or guidance regarding where to go for physical therapy so I called the generic phone line. They assured me that I could go wherever I wanted.

I asked for a nearby hospital as that is where my blind friend Nan has physical therapy and I hoped maybe we could car pool. Don’t worry— I wouldn’t let Nan drive.

But when they transferred me the person that answered asked me why I needed physical therapy. I said that the x-ray showed retrolisthesis and arthritis my spine that could be a complication from my cerebral palsy.

As soon as she heard “cerebral palsy,” she transferred me to the neurological physical therapy office. But when they looked up my chart, it said “back pain.” And they don’t do that.

By the very very cheery person on the phone and I had a chat— and I asked her— are we treating my back or the cerebral palsy that probably causes the back issues. We both agreed it’s a good question.

She put me on hold twice to confer with the actual physical therapists and they decided to keep me.

I go see them Thursday morning.

Another step on the journey: a discussion of what is happening in my spine thanks to cerebral palsy

Learning about your own body, exploring treatment options and trying to survive while doing it is exhausting.

I shared my plan to advocate for myself with my life coach from Ginger. And we also discussed some of my fears of where this could go.

And today I asked Dr. Nicole Jensen of Back in Line Wellness Center her thoughts.

She was kind enough to get out her spine and explain things to me. And she said I moved beautifully today, which could be a sign that the short shifts I’ve had this week are taking stress off my body.

She had never seen retrolisthesis in a group like this — and reported that the pedicles appearing in tact was great news. But basically that slight shift in the discs from the retrolisthesis would put pressure on the nerves.

And that the disc space narrowing was arthritis.

So to continue my work with my trainer— and she is impressed by his attentiveness and ability to adjust workouts to medical needs, pursue physical therapy, and try an inversion table. It might stretch out those irregular curves of the lumbar spine. Core exercises will be super important, and I wonder if my commitment to my core throughout my adult life has contributed to this good report.

Dr. Jensen asked for business cards from Dan at Apex Training. Because based on what she’s heard from me she would recommend him to her clients.

I’m noting these discussions and plan to email my doctor Monday.