The Rocket Ship Construction Zone

I had an MRI this morning.

It was my first MRI, to monitor an aneurysm in my brain discovered last year during my random heart issues. Last year they did a CT scan with contrast as I did not know if tooth implants would count as metal. (It does not. They are non-ferrous. I learned this as a more-or-less universal fact from the radiology tech. And to think I made my poor dentist research the screw in my mouth.)

When I called to schedule a few weeks ago, they asked where I wanted to receive an MRI and I chose the hospital that is 600 steps away from my front door. They offered me an appointment at 7:15 a.m. on a Sunday. I agreed.

Roll out of bed, wander to the hospital, get an MRI, and be home while it’s still early for a cup of coffee.

And that is indeed how it played out, and I had my coffee in my hand before 8 a.m.

On the walk over, I noticed this Subura station wagon from Vermont with roses on the hood. Now, between the apartment building across the street and the hospital itself, one finds a lot of out-of-state cars and doctors-in-training. And while I did not linger long enough to read what was written on the windshield, it said something like “you and me forever” and someone had laid a wrapped bouquet of roses on the hood. A marriage proposal? A stalker? A farewell from a lover returning to a place far away as a promise to come back?

I surely hope they aren’t roses, because leaving roses on the hood of a car in the middle of the city in the rain, especially if it’s a marriage proposal is certainly both romantic and stupid.

I arrived at the hospital around 6:50, in part because I know they ask you to register at the front desk and then meander through the facility to reach the waiting room of your particular appointment where you start the registering process again. There are usually insurance card checks, and headshots taken to prevent fraud.

I walk in the front doors and there’s one person, in a hospital t-shirt, sitting right inside. Before I even have a chance to pause or plot a course, she greets me with, “Are you hear for an MRI?”

I say yes, and then she follows with, “Is your name Angel?”

I again say yes.

Now, I know this particular hospital doesn’t do much hospital-ing. They literally only have one floor of inpatient services, and I experienced that last year. I must say the renovations are looking gorgeous, again, nothing like the room I stayed in last year straight out of mid-twentieth-century Americana. At this early hour on Sunday morning, there is no one in the hospital but me and this employee, Rose. No one.

“As soon as I clock in, I’ll take you back,” Rose says. “But we have a few minutes. So have a seat.”

I sit behind Rose in the waiting area in front of the not-even-staffed-yet registration desk.

“That’s fine,” I say. “I’ll read my book.”

I have a lovely conversation about Rose, her retirement from one of the larger hospitals in the network, and how she has really enjoyed reading again since her retirement. She clocks in and escorts me upstairs and down the hall to the MRI suite where I sit in another waiting room and Rose greets the staff who are arriving with us for their shift.

I sit and read my book, and the techs come for me. For the first time ever, I am given hospital pants. I peel off my civilian layers and tie on my gown and pants.

Much to my relief they have a metal detector as the final phase of the pre-MRI adventure. I am pleased to report I am not magnetic.

So many of these tests come with so much hype, and I have to say, I think I prefer the MRI to the CT with contrast, because an MRI doesn’t make me feel like I’m about to or in the middle of urinating in my pants.

And they tell you to stay as still as you can– which always makes me super aware of every twitch in my body.

They warn you that the machine is loud and they give you ear protection. If I had to describe the experience I would say space rocket meets construction site. And so many different types of squealing, clanging and banging.

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.

Scary words

I almost didn’t write this one. It’s been a long day, and I’m tired, and achy, and cranky. This morning started off-kilter when I couldn’t find my car keys (they were in my pants pocket in the dirty laundry basket), had left my sweatshirt in the car and it was cold, and I should have had more breakfast.

My Apple Watch is doing its job– and it does seem to track significant leaps in heart beat when I rise, 30-35 beats per minute, but I don’t know how long that has to last to qualify as POTS. (And I have a note to call and schedule the tilt table test Tuesday afternoon.) Right now, I am just collecting data. And those numbers tell me when to give my body a minute to right itself. Regardless of what my diagnosis is.

When I got to work, a colleague told me she called the cat rescue and the person she spoke with didn’t know anyone with my name. That was certainly odd.

I started out strong, as I often do in the morning, preparing 8-9 fixes every half hour. But by first break my hip started acting up, which made the day harder and I fell behind. By ONE fix. But of course break is 10 minutes, so then it was four fixes. But by lunch I was only half a fix behind.

I didn’t have many calories with lunch. The portion of hearty vegan barley soup I had left was smaller than I expected. But by second break I was officially at the company numbers, which meant I’d be a little behind when I returned. But I had work that was easier for me, so I was confident that despite my inability to bend, I’d get the job done.

But then I saw a notification from my medical portal. My CT results were in.

Normal. Normal. Normal. That’s what I saw as I skimmed the report. Normal. Normal. Then… “suspected 2 mm laterally directed left paraophthalmic ICA aneurysm. Recommended follow-up with neurovascular service.”I freaked out internally. Started shaking a bit. I was prepared for a lot of things but an aneurysm never entered my mind. Pun intended. Note: I was reading this at work, and I only get ten minute breaks so I wasn’t reading for comprehension. Over the course of the afternoon, I realized this was small. And I calmed down fairly quickly. So this was about surprise. And I told my friends, “Well, now we wait. The faster I get a phone call from the doctor, the worse the news is, right?”

The nerves gave me the energy to finish at my target number to make my employer happy.

I then headed to physical therapy, where I was honest with my physical therapist about everything. And before we got started he fixed my back and hip. Those people are incredible. I noticed while doing my exercises– the clamshells were much harder and the stability exercises… I was falling backwards instead of forward. When I stand on one leg I normally fall forward. I almost fell right off the machine, and backward, which would have been terrible as the physical therapist was with another patient and no one had a gait belt on me.

But remember what I said about lunch? I was starving. And I seemed to be recreating the same scenario as some of my other falls– busy day, discomfort, hunger… if I went home and ate a big meal (which diverts blood into digestion), would I fall?

I went home and The Teenager promised me a big dinner of chicken parm, cheesy garlic bread and brussel sprouts. I warned her that large meals might be part of the fall formula, so she followed me to my room after we ate. She stated that she didn’t like the way I was wobbling.

Good news is I haven’t had any low blood pressure since I ate that entire Little Caesars pizza Saturday night. Bad news is, the binge made me regain the five pounds I lost.

But at least in my dreams last night I had a good time– as I was apparently dating a man with dark hair and a Tesla. I very much enjoyed his company, and he appeared to enjoy mine. This wasn’t our first date, but it was definitely a new relationship.

I fell down the stairs at the hospital

It’s 7:53 a.m.

A little less than an hour ago I left home to walk to the hospital for my head CT.

It was raining, with flurries mixed in, and I didn’t think to bring a hat, a hood or an umbrella. I don’t mind getting damp, and the moisture helps tame my curls.

The walk to the hospital was uneventful. I was confused where to find the radiology department so I looked up the address: 250 S. 21st Street.

Now, I always get 21st Street and 22nd Street mixed up in my head. So to be sure imaging wasn’t in a separate building, I walked down to 21st Street.

That was mistake number one.

Imaging and radiology is in the main hospital. The main hospital was built over 21st Street, so to get to the entrance I had to backtrack, and go up to hills will black ice, to 19th Street.

I walked in, waited in line, and was politely told I needed to go outside, to the left and to the left again.

In other words, imaging was next to the Emergency Room which was where I started backtracking.

Bit extra steps are good. Let’s stay positive.

I leave, go down the concrete stairs between the hospital and the parking garage, trying to confirm where I need to go. I suspected radiology was next to the ER but I had just been told “left and left again” and I get my left and right mixed up, especially when I’m nervous.

And now I’m nervous and hurrying. In winter weather.

I forgot the stairs by the hospital are built like speed bumps… one step… walk more than a side walk square… a staircase of about five steps… more single steps. All painters with yellow stripes.

I missed one. I did a lovely corkscrew spin and bounced along the sidewalk.

I got up, kept walking, fighting tears and trying not to hyperventilate.

Because physically I am not in my best shape today. (More detail here.)

I walk into radiology and I tell the admissions clerk, “I have a CT at 7:30 and I just fell down the stairs coming from the main registration desk, I’m fine but I’m a little shaken.”

She, of course, wanted to know if I needed to be examined. I said no.

Then she assumed it was icy. I said, “no, I have cerebral palsy and I just missed the step and once I go down I can’t stop it.”

Her next thought was, “why didn’t they have someone bring you through the hospital. Why did they make you go outside?”

I replied, “I just did what they told me.”

The next fun part of the journey was once again I was told that Medicaid denied my procedure. I told them I qualified for Medicaid for one month in 2020 and they have not paid for anything since that month.

“But you qualify,” they insisted. “Or it wouldn’t be there.”

Just let me have my CT scan, especially now that I’ve hurt myself.

They take me back, and I thought maybe I should go to the restroom and wash my scraped hands but the tech assures me it will be five minutes. So I figure it can wait.

The scan was very cool. I have never had a CT scan or an MRI. They stuck me in the tube and I noticed the sleek black ring inside the tube that had a bright ball in it, like a star. I was told to be still so I closed my eyes.

The machine roared like my clothing dryer, the table shifted, and I was done.

I then once again thought about the restroom but it was 7:30 and my teenager needed to be at work at 8, and I thought maybe I could catch her.

But the sidewalks were slick and now the snow was coming down. It was coating everything. So I didn’t get home in time to see her.

But, between the cold, my nerves, and the fall, I suddenly realized I needed to urinate. And as the greatest insult to my pride today, I started to pee myself five feet from the toilet.

When I removed my pants, and realized the “accident” wasn’t as bad as it felt, I saw my knee was now bleeding. I have a sore spot on my left thigh up by the hip, two scraped knees, two scraped off palms, a couple scraped knuckles and a sore spot on my left forearm.

My trainer and I agreed that maybe the gym isn’t a good idea today.

And I cracked the screen protector on my phone.

I really, really hope that when the neurologist calls to talk about my CT scan that she can needle the physiatrist about seeing me, because I need help.

I’m scared. And I need to understand what this body can do and what it can’t.

Neurology Update

So, I just received a phone call at work from my neurologist’s office. They want me to come in at 8 a.m. Wednesday, because “my” insurance company denied my CT scan.

I use the quotation marks because this letter comes from the insurance company that provided my Medicaid. I received Medicaid four months into my unemployment in November 2020, and I accepted my position at Stitch Fix one week later.

Stitch Fix provides medical insurance as of day one of employment.

To the best of my knowledge, I used Medicaid for one visit to my primary care physician that happened to be scheduled during that week.

I filled out the required paperwork to alert the county assistance office that I had a job, and insurance. I received some paperwork that implied my Medicaid would expire at the end of the year.

But as of January 1, 2021, it still seemed to be hanging around as a secondary insurance policy. Even though I never saw them pay for anything, and my primary insurance was a high deductible plan.

In Spring of 2021, I received a notice that I need to reapply for my medical assistance or it would be canceled as of 8/31/2021. I threw the paperwork away— because I don’t need Medicaid.

But the hospital and the network of doctors associated with it still insisted I had it.

So I thought maybe it would disappear December 31, 2021.

And December 28, 2021 they write the letter denying my CT scan that I photographed and posted above. I receive it around January 5, 2022.

To refresh anyone’s memory or for new readers— I have cerebral palsy but I didn’t really receive medical treatments or interventions as a child, which leaves me now trying to understand my body as it ages. I am approaching my 47th birthday.

My neurologist appointment was December 23 — you can read about that here (and more here) as it was my first ever. I now have an official diagnosis on file with my doctors.

The neurologist’s office scheduled me for a CT scan of my brain on Dec. 30. I was really excited for several reasons: I have never had any CT scan; I am very curious to see what brain damage will be revealed; and my deductible was paid for 2021.

But the office canceled it two hours before the procedure because the insurance company neither approved nor denied the claim.

I find out today that Cigna has approved the scan but Medicaid did not and the neurologist’s office didn’t want me getting a surprise bill.

They canceled a procedure that would have cost me a 10% copay, and now I will pay for it out-of-pocket as my deductible is $1,750. And my HSA will be empty as the teenager is getting hearing aids Friday.

In other physical related items:

  • Yesterday I experienced a lot of steady pain at work. By the end of the day, I couldn’t even reduce my symptoms and sleep was uncomfortable. I blame the fact that they changed our break schedule and we had our last break at 1:50 — leaving us to work three hours without a break, the last three hours of our ten hour shift.
  • I finished yesterday at about 80% of the daily metric.
  • Today, I had a high point at 3 pm of about 95% — and finished the day at 90%.
  • My back today felt better, pain at let’s say 4 instead of 8. But my toes on my right foot burn about 10 minutes out of every 90.
  • Interesting side note, I think the intense back pain involves some nerve activity as when my pain increases I can’t feel my need to urinate. Not at all. So that’s fun.
  • And the Mirena is doing it’s job. But for the first two months, I spotted most of the time. I think I had two days each month where I wasn’t spotting or bleeding. I think that has finally ended. My body seems to act like my body.
  • But today, for some reason, my right breast aches. Kind of like milk let down.
One of my orders today was 8 pounds of jeans

I had a good day

It’s been a while since I’ve had a good day. Sunday was okay, but then Monday was hard. I had to ask the question—

How can one day be so much harder than the day prior? Shouldn’t grief get incrementally easier?

I had either a mild cold or intense backlash from not taking my allergy medicine which really fatigued me. Combine that with my father’s death, no real Christmas to speak of and a formerly good friend reappearing Sunday night to gaslight me, again, hopefully for the last time.

I have been short-tempered, moody and a little meaner than usual. We all understand the reasons why, right? In addition to this very emotional stuff, I am still dealing with what is essentially premature aging in my spine and a new extended work day and a daily schedule that involves flipping my previous life upside down. I used to go to be at 2 a.m. and now my alarm wakes me at 5 a.m. That is, when cats don’t request a cuddle at 4:30 a.m.

The former friend in question here wished me a happy and safe holiday after ignoring me for the last three weeks— which unbeknownst to me was on purpose because I wouldn’t provide this person informative on a quasi-sorta date I went on. This person felt slighted and like they were not valued as a friend because I did not share something I felt was personal and none of their business (I told none of my friends) AND something that didn’t go anywhere worth reporting.

Apparently, this friend— who has a history of gaslighting— stopped looking at my social media, my blog, etc. Not once did this friend say anything to me.

This friend said nothing when my dad passed.

So, being at the end of my rope in every category, I lashed out.

I said mean things. The same mean things I have said to this person before and this person has responded not by addressing those issues but with points on how nasty I can be.

I’m wondering if I need to block this person. I don’t want to, because once upon a time this person was a good friend. But circumstances outside my control have changed my relationship with this person.

And I don’t have the emotional energy to placate people any more.

And in those same terms— I am so grateful for those friends who keep checking on me. You know, the ones that actually pay attention to what is happening in my life.

But anyway… my good day…

I am realizing more and more that stress makes my aches and pains flare. And I wonder if that contributes to the burning sensation in my quads and my instability.

At work, it quickly became apparent that I was hitting my metrics! I texted the teenager and asked if she wanted to have breakfast on my 15 minute break. She made a Dunkin run and brought the dog to see me.

I think I maintained 95% in QC all day.

Lunch was delicious — leftover chicken with vodka sauce and fresh broccoli, kale, and spinach.

And I got to style card, which I also got to do yesterday. It feels good to do something different and work in positions not everyone in the warehouse knows.

It just felt like a normal day, and I felt like me, and not a foggy me.

Exploring my Disability update and Podcast review: Disability After Dark

I am scheduled for a CT scan of my brain at 1:30 today. The neurologist’s office called at 9 a.m. and warned me that the insurance company has not authorized it yet.

Update: it is now 12:30 p.m. and the neurologist’s office has called and has canceled by CT scan.

I’m disappointed for two reasons: 1. I was excited to have to pay much less for my CT scan because my deductible was met (and do I dare to conspire that maybe the insurance company is dragging their feet so I have to pay for it?) and 2. I want to see my brain.

I would love to see a functional MRI of my brain but that will never happen as I have a dental implant and while that gives me a good structure for my missing tooth, the MRI would rip that metal out of my head.

Cerebral palsy is a condition that occurs when either at birth or after birth the brain doesn’t get enough oxygen and therefore, I am assuming here, dies.

But children are amazing creatures and brains rebuild and rewire as best they can.

In my case, I have hemiplegic cerebral palsy that causes symptoms in my lower body. Quadriplegic cerebral palsy effects both halves.

Cerebral palsy is a static condition, which means it doesn’t get worse or get better. Although, everyday wear and tear on the body can be exacerbated by awkward movements, which causes premature aging.

My neurologist assessed me and came up with some malfunctions, including these:

  • I have spasticity in my legs— specifically in my quads and calves. This means my muscles do not relax. Stretching the muscle groups forces them to move and is as close to relaxing as they get. Stillness often causes stiffness. So literally standing up from my bed and walking after a good nights sleep makes me feel like the Tin Man from The Wizard of Oz.
  • My feet naturally turn inward and I don’t have the range of motion I should have in my ankles. My left foot specifically likes to try and hang out under my right foot when I walk.
  • My feet don’t have the correct temperature sensitivity. This explains why I never feel my feet are cold until they are purple. And why once they are cold, it’s practically impossible to get them warm again.

I’ve been researching everything I can find on cerebral palsy and an interesting podcast is Andrew Gurza’s Disability After Dark. He originally started the podcast as a sex podcast for people with disabilities but, as a disability advocate, has interviewed a wide range of people and covered a wide range of topics. He’s also launching a sex toy line for people with disabilities.

Like any podcast, some episodes are stronger than others based on the guests, but I love his diversity in interviewing people with a broad range of experiences. And he is very honest about his life and brings that same level of truth out of those he features.