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On writing, living and working (with a disability)

Angel Ackerman 1 Comment

I pride myself on being able to write just about anything at any time with no fear of writers block.

But lately, I haven’t been keeping this blog up-to-date. I think it’s because I’m doing so much that I don’t have enough stillness to think, reflect and write. I still have the thoughts, but I don’t have the time to germinate themes and record them and so I lose the moment.

Last night, I was a guest speaker at the Behind Our Eyes writing group for writers with disabilities. Nan has been a part of that group probably for most of its 19+ year existence, but I am a relative newcomer. I joined because I read Nan’s email and work so closely with her as a writer that I already knew most of the members in the creepy troll way.

Nan pointed out to the group that I was a gifted cook and bargain hunter, and that she hopes I commit more time to my disability memoir because I have some insights that the world needs to hear. And maybe they are things I also need to remember.

I overdid it last week. The last few weeks have been insane. I haven’t been eating right, or sleeping well, or giving myself any breathing room. I saw my cardiologist last week, and I mentioned to her that I don’t know if my blood pressure medications are the most efficient way to stabilize my heart rate.

The backstory

So, in March 2023, I had two bad falls down stairs in close proximity– 2 weeks apart. Neither were traditional mechanical falls of the type I am used to, those from lack of proper muscle control due to cerebral palsy. The first occurred as I was hurriedly leaving work to go to the chiropractor. I dove down the cement stairs and ended up severely spraining my pinky. Most dumb injury ever, and my pinky is still bent.

I didn’t know it at the time, but my eating habits had flooded my system with salt when I misbehaved, and then when I suddenly returned to my normal diet and drank the massive amounts of water I had always consumed, well, I washed all the sodium from my body, causing low blood pressure and dizziness (orthostatic hypotension).

With cerebral palsy impacting my gait, and allergies/congestion also challenging my balance, a sudden drop in blood pressure may have caused the fall. (I suggest this because I did almost pass out in the moments after the incident.)

Almost two weeks later, I was carrying a cup of tea upstairs when I had a nothing fall triggered by my head and not my legs. My daughter watched it happen. I plummeted out and down and into an air conditioner that was on the floor. I split open my chin directly under my lip. I definitely needed stitches so we headed to the emergency room.

I told the doctor that I knew mechanical falls and these weren’t from my legs, and he gave me some options:

  1. He could stitch me up and send me home in a matter of minutes.
  2. He could order every test and I’d be there all night.

I asked if there was an option in the middle, and he suggested starting with some bloodwork. But they also noticed my blood pressure hadn’t come down so they put me on a heart monitor and very quickly noticed that I was in Afib with OVR.

So it looked like I would be there all night anyway.

They eventually labeled the whole incident as idiopathic and put me on a low-dose beta blocker to make sure I stayed in rhythm. I invested in an AppleWatch to try and get information about what my heart was doing.

Fast forward to present-day

I have had no incidents of Afib since that initial one. But each fall, my blood pressure has risen in the autumn. Is it allergies causing stress on my body? Is it the stress of the end of the year and all the obligations of adulthood like taxes and paying for fuel oil? Is it just the looming presence of Christmas? Or is it the change in the seasons and the shorter days? Or a figment of my imagination?

In the autumn, I struggle more with anxiety. My primary care physician has talked with me several times about the impact of stress and anxiety on heart health. I have been in and out of psychotherapy for 15 years showing symptoms of depression and generalized anxiety disorder.

So I asked my primary care doctor, my cardiologist, and my psychologist if I might need an anti-anxiety med instead of the combination of other meds for high blood pressure. Because typically my diastolic pressure is typically good, and high in response to stress, but it’s not uncommon for my systolic pressure to stay high even when my heart is at rest, sometimes elevated for days even with a now higher dose of the beta blocker.

I take a muscle relaxer for spasticity several times a day and some anti-anxiety meds can also treat this, allowing me to reduce the amount of medications I am taking. A standard low-dose beta blocker and muscle relaxer for maintenance and on days that I am anxious, an anti-anxiety med instead. So now I’m on the hunt for a psychiatrist to get an evaluation.

Which brings me back to last week

Last week was brutal. I was booked every day from 8 a.m. to at least 10 p.m. And Saturday I attended Collingswood Book Festival as an author with Pennwriters Area 6. I met with clients everyday, taught my college class, went to WDIY to talk about advertising my business (and hopefully make some new friends)…

And I still worked part-time. I don’t talk much about the job I have in a local fast-food restaurant, a job I took last January because after a year of relying on Parisian Phoenix Publishing for my income, the realities of first quarter in the business world were making me nervous. And since royalties pay out three months after sales, I know how much money is coming and when.

And 90% of the time, the evening fast food job suits me perfectly and feeds me. The general manager was an English teacher until this year and understands my business and my frequent time off requests.

But last week I had two long shifts back to back where I was assigned jobs that were physically challenging for me. And I haven’t been in that much pain and discomfort in a long time.

And so even though I still have more work than time, and business can be as stressful as it is rewarding, I will try to go easier on myself. I only have two fast food shifts this week, and they are both on the longer side… but my days aren’t packed nearly as tight.

Fitness strike out

Angel Ackerman Leave a comment

I had my intake for the Thrive medical fitness program at St. Luke’s Hospital. I did not finish all of the required testing because my heart rate and blood pressure were too high.

But let’s back up. Perhaps things aren’t as “all or nothing” as I feel right now– I feel like in many areas of my life I am “failing” or “losing” and the reality is that life is more complex than that.

I was soooo excited to join the Thrive Medical Fitness program, and I still am. The staff seems pleasant and supportive.

And I wanted to do stuff.

No doing stuff yet.

I had a 5:30 appointment for the intake, and I was 100% honest on the form about my habits and my medical conditions. After all, it’s a hospital-sponsored program so they have access to at least my medical history anyway. So I told the staff member about my fall history, about my bout of afib, about my orthostatic hypotension, my anemia, and my increase in spasticity.

And I quickly learned that due to all of these conditions, I will not be allowed to workout independently at the facility. I will have to make an appointment and work out with one of their trainers for every workout.

Now, to start, I can see this being prudent, and I hope I will prove I am not a danger to myself and be allowed to drop by and workout. But, if not, my new home gym is almost ready.

So, I accept this. I even try to see the nice staff person’s small gestures to my elbow as I step on and off the fancy scale as kindness. She does not know me, so she has to be cautious. But it would be a delicious story if I fell off a scale. And hurt myself. At the hospital.

Which reminds me of the time I fell down the stairs at the hospital, but that’s another story. You can read that story here.

Then, they took my heart rate and my blood pressure. Both were really high and would not come down.

Part of that might have been because I did not know they were in the basement, and even when I made it to the basement, they were tucked in a corner that had me walking around the whole building for a while. Then I got myself worked up when my anxiety was already doing overtime– I’m thinking a lot about how I’m going to heat the house this winter, what my next strategy will be for maintaining the publishing company’s income, and facing the holidays, a time of year when I typically feel the absence of my family.

So today I started taking my beta blocker again as I initiated my Clever Fox fitness journal. I filled out all the spaces regarding measurements, goals and trackers. Maybe it will force me to be introspective and keep track of my own behavior.

And meanwhile, I have taken Bean Dog for several walks this week. Our first was on last week, and it lasted less than five minutes. We walked halfway up our block and back, just to see how she behaved for me and if she would walk with me and leave Eva behind. The second walk was straight down our street almost 1.5 blocks and straight back, for a total of nine minutes.

Yesterday we walked around the whole block, which took 12 minutes, but about 8 minutes in, Bean spotted our neighbor’s pitty jumping at the fence literally within view of our house and I was afraid to try to get her home. In trying to grab her heel-level handle, I scraped my knuckles on the asphalt and decided to just sit there and wait for Eva to rescue us or for the dog to calm herself.

Today we walked two full blocks (15 minutes) after Eva trained me to use a hands-free leash with a bungee-style lead to absorb some of the force. Eva hooked it to the traditional leash so if she started to react badly I could brace my body weight and use more of my power to balance the dog, and then regain my control by taking the traditional leash back.

We have not had to do that, but it’s good practice and good exercise for both of us.

PS– I return to the medical fitness center tomorrow to resume my intake testing.

The follow-up and the next fall

Angel Ackerman Leave a comment

Yesterday, I visited my primary care physician. He was thrilled because my blood pressure has stayed at 100-110/70 for the last six months. I am disappointed that my weight has not budged.

Around the last snow storm, I noticed my sinus troubles got so bad that only a day of Sudafed would stop my sneezing (see more here or via the publishing company’s Substack newsletter here) and that since then the mild lightheadness and congestion have not abated. And since I took a flying leap out the warehouse door March 1, 2023 and following that with stair acrobatics at home March 13, I had to ask my doctor– could my sinuses be contributing to my fall risk more than we realize?

So, he changed up my allergy medicine to move me from OTC remedies to prescription medication.

I also mentioned that my heart rate has been stable, even when I have no caffeine or overindulge in the stuff, and that salt has a strong effect on my heart and my weight. But I was no closer to keeping my heart rate under control first thing in the morning.

He asked me to tweak my beta blocker routine to take it before I get out of bed in the morning. And to be completely attentive to it at night. For a month, I am to take both half-pill doses as close to 7 o’clock as possible to see if that prevents my heart rate from jumping from 60 to 80 when I sit up, and then from having another jump from 80 to 100 when I stand. If that balances out my heart rate, he may move me to an extended release medication to maintain my heart rate. Especially since I have a small aneurysm in my brain.

The new allergy medicine he put me on– shifting me from Zyrtec and Flonase to prescription strength Claritin and Nasonex– was ready at my pharmacy by dinner time last night.

“It’s a preferred medication of your insurance,” my doctor said, “so it shouldn’t cost you too much.”

So, the teenager and I took the dog on a walk to CVS this morning where the generics of these two medications, for a one-month supply, cost $93. I know my Zyrtec and Flonase probably cost similar– but I never pay full-price. I use coupons and extra bucks and buy the generic, and on top of all that buy the twin pack and split it with my friend Nancy.

We walk home, and I don’t really complain about the price because I need to know if sinuses are increasing my fall risk and I want to know if I can reduce that risk so the investment is worth it.

On the way home, the dog was frolicking on a small hill, and she came trotting down to catch up with the teenager. She misjudged or maybe lost her footing and raced down the hill right at me, hit me in the legs and sent me flying. I landed on the sidewalk. My knee has a hearty scrape, my hands are sore, and my nervous system is done for the day.

Monday. Just Monday.

Angel Ackerman Leave a comment

Despite waking yesterday 15 minutes before my alarm and falling asleep face down in my pillow as I tried to lift my phone off my desk to start my day, yesterday started as a decent day. It was slow, and everything seemed to annoy me. My body hurt, my heart rate and blood pressure seemed off, but my work metrics were good. Too good.

I was very thirsty all day, and ended up stepping away from my station three times during the day to use the restroom– which is not me– but my current symptoms include not being able to tell how urgent the signal to urinate is so waiting too long or not responding immediately might result in an uncomfortable outcome.

I returned to eating “real food” after a weekend of salty and sweet treats for my birthday, which made my body feel generally bloated and sluggish but had stabilized some of my postural issues.

And my hand, the one where the medical professional had done an exploratory IV last week, turned multiple colors that didn’t exist there over the weekend.

The coffee shop I had selected to meet Natalie Lowell of Exquisite Page turned out to be closed on Monday, as was my second choice, so she suggested the old familiar Terra Cafe. I had a lovely London Fog and the discussion flowed easily.

I learned along the way to the cafe that the Meet-and-Greet scheduled for FURR Louise for June 10 was actually a sight-unseen adoption, which makes me nervous with special needs cats and this one has been in my bedroom for two years and sleeping in my arms at night for at least six months.

I ate a small snack. From there I went to the gym, where Andrew– despite our schedules keeping us apart for a week– put me through a brutal workout, which really wasn’t that brutal but it felt brutal, reinforcing the idea that maybe my recent health problems are just a ramification of being 25 pounds overweight and out-of-shape.

And then I had a good old-fashioned fall on the way home. The kind that scraped my hands and bruised my thigh and chewed up the flesh of my shoulder. After a conversation with my Apple Watch, (“Looks like you had a hard fall.” “I fell, but I’m okay.”) I headed home, my pride more battered than anything else.

The Teenager made an enjoyable dinner and I had a Hostess cupcake. I could have finished the strawberry cream puffs from Sheetz. Those were surprisingly amazing.

By the time I took my shower, my wounds stung and my left hand was trembling. My heart rate and heart rate variability were low, my blood oxygen was 97% and my blood pressure was high. I decided to write a small blog entry, but when I opened my computer I saw a message from Gayle.

The content led me to believe that I sent her the wrong edited file of Larry Sceurman’s Coffee in the Morning, and so I opted to go to bed. When I woke this morning, I had received the truest of all motivational messages from Gayle.

DO NOT SECOND GUESS YOURSELF

So when I get home from work today, I’ll have to check the file. When I have more wits about me.

While normally my self-confidence wavers, Gayle’s right. I do not second guess myself. I move forward often boldly in a direction without worrying about the consequences.

I’m not sure I feel better today. That remains to be seen. I had strange dreams last night. A toilet falling over while I was using it. Having unexpected and messy female troubles. And my favorite– sitting next to my father after dinner at the table as we always did. He would be smoking his cigarettes and perhaps having a cup of coffee. The Teenager and my stepmom were sharing cheesecake as if nothing were wrong, and not offering me any. And then I realized that my father is dead, and that The Teenager and my stepmom didn’t see him. He was there just for me.

And once I realized that, he was gone, and all I had left in me was to weep.

I had fallen alseep last night with tears in my eyes. And I woke with Louise in my arms and tears in my eyes again, but this time, with the strength to face a new day.

Have you ever had brain surgery before?

Angel Ackerman 1 Comment

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.

Barbells and heart rates

Angel Ackerman Leave a comment

It happened again yesterday. A work colleague reminded me that she was old and 50, at which point I had to say, “well so am I.”

After some back and forth, it was determined that I am a year younger than her, as my 48th birthday is in less that three weeks and her 49th is in June.

I have so much to say, and so much on my mind, that the words overwhelm me and don’t emerge as they should. But, here is my attempt.

Let me just say– so it looks less like I am whining– that yesterday was probably the first day since late January that I did not feel my heart pounding in my chest. Even at the gym. The Apple Watch reports that even as Andrew had me standing on balance trainers while swinging the heavy ropes, my heart rate stayed at around 150 beats per minute.

Yesterday I also felt strong and steady walking around all day. My back and hip pain never got over a three, and dissipated as soon as I got home from work. I didn’t feel like I was swaying standing there at my table.

Which, if you are curious, the Apple Watch counts folding clothes as steps, especially when it’s the aerobic clothes folding we do at Stitch Fix. So, I’m now routinely getting 15,000+ steps a day. I know they are not steps, per se, but it is activity. And about five minutes a day of folding clothes the watch registers as exercise.

My blood pressure has consistently been about 98/54 upon waking, 125/80 most of the working day, and 115/70 in the evening. I keep an electrolyte beverage at my bedside (electrolyte powder plus if you are curious) and chug about six ounces before getting out of bed. I’d have more, as the doctor suggested a full 16 ounces, but I have noticed that I have a tendency toward incontinence these days. If I feel I need to use the restroom, I have to go right away or I might pee myself on the way to the bathroom. It’s happened at home several times that once I registered the sensation, I just can’t hold it until I reach the toilet. Not fun.

And my pinky still tingles at work, during exercise and during postural changes– or so I think. I’m trying to figure it out.

The tilt table test to rule out Postural Orthostatic Tachycardia Syndrome (POTS) is May 17. And my neurologist will be referring me to neurovascular for the aneurysm they found in my head on my CT scan. But good news, she said, is that she doesn’t think the aneurysm has anything to do with my symptoms.

My short term disability provided by my employer only provided two weeks pay of my one month leave, and it was only 66% of my wage at that. I’m still bickering with them over the last week, because they claim my doctor hasn’t sent appropriate notes to justify my last week. I know my doctor’s office faxed the forms twice and I sent screen shots of the office notes. Now the absence management company has switched my examiner.

This remains extra frustrating because my initial fall, on Stitch Fix property, happened March 1. I filed a claim at that point, and missed some working time because of the incident but no full days. I don’t think. They canceled that claim, and when I ended up in the hospital the evening of March 13, I had worked a full day that day so that meant my waiting week started March 14. All this bickering over $450.

In the meantime, my car insurance had been due on the day I ended up in the hospital and I ended up paying it from my hospital bed by credit card. Because I hadn’t anticipated being out of work mostly unpaid for a month, I had business and other household expenses, primarily groceries, on that card, with The Teenager’s unexpected car repairs, and a balance from the ceiling repair we had last year. By the end of April, I had $5,000 on my American Express. And not a dime in my checkbook or savings account.

I used my rest time during the weekend to research a personal loan. And I closed on that with my bank of 20+ years yesterday. I’ve been paying $300+ a month on credit card debt. This allows me to pay them off, have a bit of a cushion, and repay at a rate of 6%. That’s the one good thing about having a high credit score in a bad economy, it’s cheap and easy to borrow money. It certainly makes me uncomfortable to have “more debt” but I have to remind myself it’s the same amount of debt, just more manageable.

It’s a lot. It’s a lot to think about when you balance it all with the fact that I have a disability, work full-time, have a side business where many people depend on me, and I’m a mom. The jury is still out on whether whatever happened to be in March was a “single” event or whether now on top of everything else, I have a chronic condition.

Whatever it is, I’ll keep coming.

Zio Heart Monitor: Day 1

Angel Ackerman Leave a comment

Are you sick of hearing about these nuisance trials and tribulations? I am a tad tired of living them, but sometimes health problems force us to pause, reflect, organize and refocus. That’s how I prefer to look at it, and since I can’t change the circumstance, what I can do is use every moment to my advantage.

Somewhere in Thursday afternoon, I realized that I would not be at work on Friday for the release of Thurston Gill’s book, The Phulasso Devotional. I had scheduled a Facebook event for the launch and planned on recording him opening the box of books at 6 a.m. and then posting it as part of the event.

But now, I was home sick, and my employer most certainly does not want me on site while I am even more of a fall risk than I normally am. I opened the box of books at home on Facebook live and while I was recording, my Zio heart monitor arrived. (if you want to see that, click here.)

The day prior, the company had contacted me that they were having problems with my insurance company, which turned out to be because they spelled my name wrong (memories of Valentine’s Day in Mrs. Sanders’ second grade class serviced, my earliest memories of “Angel” becoming “Angle”) and they were missing a digit from my member number for my insurance company.

The Teenager assisted me in applying said device, after shaving my chest, sandpapering it, and then wiping it down with alcohol. She’s nervous it’s not quite straight and left enough, and the device itself doesn’t give you much indication how or if it is working so I guess we wait and see. I figure if the placement had to be exact, they wouldn’t let you do it at home. I would assume that most medical professionals think most people are idiots who don’t follow directions. Because really– aren’t most people idiots who don’t follow directions?

Now, my friend who had the heart attack on February 15 had a heart monitor. Not this one, but similar of course. She had a thing she had to carry with her. All I have is what is on my chest. I remember my friend saying that she didn’t know if she should hit the button or not. Because the idea is, if you feel a symptom you hit the button and log the symptom in the provided booklet or in the app. But when symptoms are things like “heart racing” or “anxiety,” it’s hard to quantify that.

Compared to how I feel right this second, my heart was racing all day yesterday. But I also know my blood pressure when I got up today was 97/56. Once I got moving, it increased to 101/67. After strong coffee, black licorice, cantaloupe, a big glass of water and my beta blocker, it ended up 110/66.

In other news, my stitches have rotated a bit and don’t poke me in the lip anymore and I think the swelling has gone down. That makes life more comfortable. I’m not doing enough hand rehab, but I’ve been using and bending the fingers in ways that mimic the exercises without sitting down and making a formal effort to do them.

I return to the gym Monday, to do what I would refer to ask a gentle workout, to get back in the swing of things and see how it goes. By Wednesday I hope to do closer to a real workout, because the heart monitor has to get a good replication of my life.

Luckily, if such a thing can be lucky, one fall happened before the gym and the later one occurred after. Based on that, it looks like exertion in the gym has nothing to do with it. Unless of course, it turns out that exertion at work is equivalent to exertion at the gym, which we won’t know unless I manage to stand at a table and fold clothes for eight hours. Who has that many clothes?

I do have to clean my closet and weed out old clothes, but I don’t want to fold all my clothes.