Tag disability

Matrix made me cry

Angel Ackerman Leave a comment

Not The Matrix. As in the movies. The absence management company.

I have an intermittent FMLA leave that I use when my body can’t tolerate my job. I thought, after having two different doctors fill it out at least three times (yes, I lost count) that I was approved for 40 hours a month of leave. Now, not understanding that is probably my fault.

But the curt paper pusher that told me I had 15 days to submit new paperwork could have been more patient. Apparently, my leave only entitles me to ONE episode per month of UP TO 40 hours. I called out sick in mid July and left work ninety minutes early today– so that 9.5 hours is not allowed because it’s in two episodes not one.

This is the type of bullshit one has to deal with when you try to advocate for yourself in an able-bodied world.

My hip has been inflamed– at least that’s what my darling chiropractor says, I say it feels crooked and like I’m dragging around a tree trunk– for several days now and getting progressively worse. So when my numbers slipped down to 97% today I tapped out, in part because of discomfort but also because the discomfort was causing me to fall behind and if I fall behind I will be penalized.

And the concern becomes: if I end up “not fully performing” in my end days, will I lose my severance?

But these are all my thoughts at the end of the day. At the beginning of the day I had to release my cat Fog from a crate and package a fecal sample for the vet. He has worms. I know it. I see it. As a cat rescue worker, I had the first medicine of defense, Pyrantel, but that didn’t work so he might have a tapeworm (that comes from ingesting a flea) and that requires Drontal which I don’t have. I think Touch of Grey (one of the two remaining fosters) might have worms, too.

Southern Candy didn’t come to work today for her own health reasons which had a friend and I ready to send out search and rescue dogs.

And Gayle, my friend and the art director, had eye surgery today which was pretty serious stuff but she texted that she can see so all is well so far.

Meanwhile, my neurologist responded to a message I had sent during her vacation and now she wants me to go for a urine test– but no one seems to know where I can go. And I don’t have time to go. So, if I have to go for a urine test, I thought I’d check with my doctor and see if I need other tests before my upcoming physical. They ended up ordering a urine test because the neurologist didn’t yet. But they missed the part about the other tests.

Now we’re all confused.

My neurologist is afraid I have some sort of UTI, which I think I’ve only had one of those in my entire almost-fifty-year life and I remember pain being part of that equation. Why they think I might have a UTI contributing to my issues I don’t know.

But there’s just too many things I need to figure out and organize. And I’m mentally and physically exhausted by it all.

The questions become:

  1. Why must organizing care be so complicated?
  2. Why do employers make health-related issues such a hoop-jumping process?

I’m very done with it all.

Today’s choices

Angel Ackerman Leave a comment

It is 4:38 a.m. and I’m drinking dark roast coffee, double caffeinated, and thinking. I gave myself permission this week– despite being behind on publisher-related business– to work on my own novel, the fourth volume of the Fashion and Fiends series, Road Trip. I’m about one-quarter through the second draft, which is where the bones of a story usually beefs up and becomes what the reader might recognize as a full-fledged book.

Every day, despite whatever struggles have me in their grasp, I look for beauty in the moment and the world rarely disappoints me. But ever since learning my day job, Stitch Fix, is closing our warehouse and my end date is September 15, the blend of anxiety, stress and hope is taking a toll on my medical and physical health.

The dietician is right. I need more sleep and I need more salt. I had been on the path for some weight loss but the crushing heat and… everything?… has led to a tendency toward snacking again. First with almonds, then an evening cocktail. Sunday night I didn’t have the strength to eat a proper dinner so I had some nuts and some peanut butter pretzels in measured portions, and then a single serve bag of potato chips because I still felt weak and my sodium levels for the day were still garbage. And at that point I finished off the brownies. And last night, I skipped the gym because my joints were screaming and my trainer picked up a cold at work. So, I started with a nice decent, 100-calorie portion of Ritter Sport chocolate stuffed with raspberry rose filling and ate the whole damn bar.

I am pressed for the time to care for myself properly. I lack the financial stability to work less or even to pursue treatments that might help. I’m not “disabled enough” for government support and it’s hard to be in this vague middle zone.

And that doesn’t just apply to people with health issues. It’s hard to be older in our society. It’s hard to be a working parent, and perhaps harder to be a stay-at-home one because so many people either resent you for being able to do that (or don’t think about the sacrifices you make to do it) or look down at you for gaps in your professional resume.

It’s hard to balance your dreams with your job, because despite respect for the enterprising spirit, succeeding in business– especially a small one without capital or experienced backers– is hard. It’s hard to be young. It’s hard to be poor. It’s hard to be uneducated.

That’s one good thing about a mass facility shut down like the Stitch Fix Bizzy Hizzy. We can also talk about how hard it is, how sad we are, and how so much of this whole situation just sucks.

So, I hope today is a good day. Or at least better than yesterday. Because yesterday was so hard I almost cried at my station, table 18 in women’s QC. The humidity in the warehouse was stifling. I couldn’t keep up– in part because my support team did not meet my accommodation’s 100%. There were four people on the support team. One did he best but didn’t normally do that work and it took him half the shift to remember my accommodations. Then, due to his physical conditions, he didn’t always get all the items for me. I know he didn’t see them.

Another person just didn’t do them. This person tends to skip them, yet does them reliably for another person who has asked for the same accommodations as mine for a temporary situation. I worked next to this person the last time she was in this situation, and she managed to do all her work with an hour to spare and now she spends a lot of time in the bathroom and wandering around talking to people. She’s even made comments about my work performance.

Which makes me ask, to no one of course because who wants to be that jerk, if the point of reasonable accommodations is to allow a worker with a disability to perform at the same level as an employee with no such limitations, why are others given the same accommodations as me but yet have time to spend playing on their phone (I have seen so much TikTok), having long conversations not even at their stations, and slipping into the breakroom for extra rest?

I was told I could do what I needed to do as long as I met my numbers. Many of these other people are high performers who are very good at their job. I am also good at my job, but my body just cannot bend and move with expediency. So, I have to spend my “bad days” working as hard as I can and pushing until my joints scream to maintain numbers, because I cannot use my medical leave unless my numbers are firmly at 100% or I will be penalized, a.k.a written up and put on a probation of sorts. I worked so hard yesterday… my numbers hovered at 98% most of the day, so I couldn’t even use my approved medical leave.

That hurt mentally and physically.

When I first received my accommodations, I was placed at table 18 at the back of the line so the support team could leave me all the boxes coming out of the refix department (work that needed to be done over for one reason or another) and then share that work with anyone else who might have similar needs.

That stopped. I was told at first it was because there wasn’t enough work. Then it was because they were afraid I couldn’t finish it all. But I’m really thinking it’s because the other workers complained. And I wouldn’t care– but I’m struggling. And it’d be really nice to be able to go to work without wondering what I will endure and how much it will hurt.

And for the record– I usually do between 105% and 110% when my accommodations are met.

And I only got accommodations after the company switched from a weekly performance average to a daily accounting. I typically meet 100% per week, but usually once a week or so, I can only hit 95%. So after two years and several shift changes, my employer changed how I had to do my job. I used to be able to do it without accommodation.

Let’s get the holiday weekend started

Angel Ackerman Leave a comment

Last night, after the representative from Susquehanna Service Dogs left, The Teenager and I went to Taco Bell because it was late and I was famished. Despite eating my meal and half of the teenagers– somehow I woke this morning extremely lightheaded and with a blood pressure of 110/60. The issue did not resolve until 5 hours later.

When we settled into the house last night, I noticed a wrapper on the floor.

“Hey, when did you get Nutter Butters?” I asked the Teenager.

Apparently, the dog had stolen them and eaten most of the pack. The dog just looked at us guiltily and wagged her tail.

And we had bought her a cheesy roll at Taco Bell.

I told some leads and supervisors about my service dog approval at work today and then when those closest to me had heard the news from me, I sent an official email.

It’s not my most eloquent work, because I’m utterly exhausted. It says, “I have been placed on the list for a service dog. It’s about a three year wait because they raise a puppy with my input for me. I don’t know what the next three years will bring— but regardless of whether I still work here or move on, I would like to initiate a conversation about whether a service dog would be considered a reasonable accommodation. Legally, it is considered reasonable if it helps me with my disability while at work, does not put any person or company interest in danger, and if the dog would be safe and not exposed to danger for its own welfare. The dog could help prevent falls and help me get clothes and other items out of the cart and off the floor.

We have a couple years to pursue this conversation and I have 2-3 years to raise the $5,000 to pay for the dog. So to have that investment pay off, I want to bring the dog to work.Also I am working with Susquehanna Service Dogs which is a very reputable and supportive program.”

One of the other people at work asked me what I would name the dog. I pointed out that I think financial donors get to name the puppies and so once I met my puppy and learned its name I would probably develop a nickname for it. He wants to know the potential nicknames.

I haven’t named a dog since the late 1970s. Preschooler me named our Old English sheep dog mutt “Cheezie” because she liked cheese.

And a local professional offered me a discount on his services so that I could use the extra funds to put aside for my service dog. That was super kind, and just goes to show that when you walk in the world with kindness and try to support those who support your community, that the karma comes back.

I came home from work and The Teenager had planted my flower from Southern Candy, exactly as I envisioned it.

I did some work for the publishing company, drank a cup of coffee and headed to the gym since I missed Wednesday having fallen asleep at 6 p.m. Andrew promised to go easy on me, because lately my blood pressure is high, my heart rate is low, and my blood oxygen keeps dipping to 94%.

I had a great workout, and even made it home without a fall or incident.

I shared my basic granola formula with Andrew, made salmon and couscous for dinner, and finished the gummy bears with The Teenager.

Being that it’s Friday night, I’m up a little late as The Teenager and I were talking about service dog gear, Gunnar kennels, and ADA service dog rule cards.

Then I came up to take my shower and Opie shot out of my room and Louise followed him. Louise is the tripod foster from Feline Urban Rescue and Rehab scheduled for adoption June 10. She hasn’t voluntarily left my room since I worked second shift. When the house was quiet at 1 a.m. she would normally follow me to the bathroom.

More good news: I passed my home visit

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Although I have not received the official email, the representative of Susquehanna Service Dogs who came to tour my home today gave me the verbal confirmation that I will soon be on the waiting list for a mobility and balance dog. I’m just about one year in to the four year process, and the representative confirmed that it will be 2-3 more years until I receive a dog.

But that’s good as I have to pay off some debt and save the $5,000 to pay for the dog.

From what I understand of the process, I will spend some more time working with dogs so that the organization can evaluate exactly what I need from a working dog companion. I will meet puppies when my name gets further up the list, and eventually one puppy will bond with me and they’ll send that puppy to a puppy raiser for basic training and then it will complete its specialized training with Susquehanna Service Dogs.

When that dog turns two, a vet will evaluate him/her to make sure its joints and health are adequate for mobility work.

Then I’ll spend several weeks training with the dog before bringing him/her home.

I think by the end of the visit with us, the representative of Susquehanna Service Dogs might have been afraid we were going to pull even more animals out of some random places.

The teenager did a great job explaining all of her animal training techniques and procedures. Even if she did babble a little due to CVS running out of her ADHD meds and her forgetting her hearing aids… but the representative of Susquehanna Service Dogs was polite, loves cats, couldn’t believe how nice our neighbor was to let us use her fenced in yard, and seemed genuinely appreciative of The Teenager’s creative ingenuity regarding household problems.

So, yeah, a new adventure awaits.

Good news. The aneurysm is nothing to worry about.

Angel Ackerman Leave a comment

I have no doctor appointments, nor tests, for the next month. It’s been three months and a lot of professionals later… with no official diagnosis but many clues. And I’m okay with clues. The tilt table study, as I thought, came back normal so I don’t have POTS and that is good news. My symptoms share some similarities with POTS, but I’ve never fainted so there’s that. Smug little doctor man was right, but he could have been less dismissive about it.

The lovely hatch pattern on my shoulder from my fall Monday is healing nicely and I don’t seem to have any more permanent damage from it. So that’s more good news.

I’ve been keeping up with my metrics at work, but my body has felt very awkward about it.

Today I am scheduled for a home visit from Susquehanna Service Dogs, and the teenager has been working hard not only on decluttering the house but also cleaning. I intended to help more, but I came home from the neurovascular appointment yesterday, canceled the gym, took a shower and went to bed without dinner.

I slept more than nine hours. And I noticed at the doctor’s office my temperature was 98.3, which is actually high for me as I am usually around 97-point-something. I checked my watch and sure enough my temperature has been steadily creeping upward, but so has the sunshine and heat outside.

Regardless, I wasted last night by spending it cuddled with Louise instead of accomplishing anything. I knew I should have stopped for coffee on the way home.

The neurologist I visited yesterday was located in the Doctor’s Pavilion at the hospital, recommended by my neurologist/physiatrist, to consult with me about my aneurysm. It was a tiny office on the sixth floor of the building with a list of doctors and physicians assistants that had to be thirty people long. The waiting room was also small, and like a good patient, I arrived at 1:50 p.m. as they asked me to be there by 2 p.m. for my 2:15 p.m. appointment. And by some strange coincidence, I found a very convenient parking space.

I had also completed all my paperwork, confirmation and check-in online. They had me in the waiting room by 1:52 p.m. And despite the fact that I had a very compelling brand new ebook on my phone, The 8-Ball Magic of Suzie Q by Jody J. Sperling, I was way too exhausted and a tad too lightheaded to read it.

Instead, I people watched. As the small waiting room grew more and more crowded. A woman in a wheelchair that didn’t fit in the actual seating area. Her caretaker. A thin woman with bronze skin who didn’t look up and had a cane. A woman with bold tattoos who argued in Spanish with a burly man who spoke on his red iPhone once she left for her appointment. (She appeared to be the only one close to my age.) A large African American man whose accent revealed he may have had cognitive issues either from a congenital disability or a stroke– I was in a neurologist’s office waiting for a neurovascular assessment. And several more who arrived as my name was called. It was very claustrophobic.

My medical assistant introduced herself as Franky, while her nametag revealed her full name was Francesca. She said she loved my name and said it was her brother’s name. My name harkens back to my birth story, so I always experience a pang of weird sensation when someone mentions it. It’s a mix of gratefulness to be alive and also a split second decision of what do I keep to myself and what do I share.

I usually keep to myself.

Franky warned me that my providers were running behind and that they probably would not arrived until 2:40 p.m. and if they arrived later than that, she would check on me. I spent the next half hour staring out the window, and studying the models of spines. Without touching of course.

By physician’s assistant arrived at 3 p.m. and used a lot of big words, showed me an image of my aneurysm (which is on the vessel between my left eye and my nose) and explained our plan of monitoring this tiny balloon of blood in my brain. (My phrase, not hers. I don’t know her big words.)

As long as the right side of my body doesn’t suddenly experience numbness or other hemiplegia (that’s my word– I know that one from cerebral palsy lingo) or as long as I don’t start experience the worst headaches I’ve ever experienced in my life, I’m good. With a less than 1% chance per year of something happening. But should either of those things happen, I am to visit the ER immediately.

After a thorough neurological exam, I headed home, leaving the hospital around 3:30 p.m. I don’t normally drive the highways at that time, and since the Lehigh Valley has so many medical professionals it seems the 3 p.m. time has a ridiculous amount of traffic. And I still can’t believe the number of people who cannot merge. You can tell from their driving that they are terrified.

Here’s hoping I can stay awake past 6:30 p.m. tonight.

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.

Bride of Frankenstein: My tilt table test and one heckuva week

Angel Ackerman 1 Comment

It’s been an on-again, off-again week of how I’m feeling. Same old, same old of issues with my hip, my legs locking up, and sometimes having the clearheaded nature to function like a normal person. Some days my blood pressure is high, other days it’s pretty damn perfect. Some mornings I wake up so lightheaded I stumble like a drunk, and… say it with me now… some days I don’t.

But yesterday had one bright spot– my “partner” at Susquehanna Service Dogs who will handle the final phase of my mobility dog application emailed and asked of she could do my home visit this coming Saturday. Why, I said in reply, that’s my birthday but I can tweak my plans to accommodate a visit. And the idea of this got me very happy.

And so we set the plans.

Today, I went for my tilt table test. If I had a Dr. Frankenstein fetish, it would have been quite the event. If I had teased my hair to flow upward, I could have been a Bride of Frankenstein’s Monster, since I was strapped to a table with large straps and covered with wires and tubes.

To make it more fun, my dehydrated veins (I was not allowed to eat or drink for four hours prior to the test) would not cooperate with the poor older man who had probably done 1,000 IVs in his life. The first attempt was in the inner arm of my right side, as the left completely refused to offer up any juicy conduits.

But seriously, they hooked me up to the ekg and monitored my blood pressure every 10 minutes. They strapped me to a bed that stands 70 degrees upright, and after 10 minutes at rest, they stood me up for 45 minutes to see if anything happened. Nothing did. So perhaps smug little doctor man was right. My symptoms aren’t consistent with POTS.

You know, the man administering the study said, your beta blocker can do that. (Meaning the symptoms I described.) But, I thought to myself, I had these falls that caused injury and required medical attention before I started taking a beta blocker.

Before I laid down to start the test, my heart rate was more than 100 bpm because of some inherent stressors in my morning. In comparison, when I first wake my heart rate is usually between 52 and 65 bpm. At work, my heart rate is typically between 75 and 95. My resting heart rate average for today, according to my Apple Watch series 8, is 64. And my walking average is 130 today, which, again seems a little high.

When the bed rose, it make me feel like I was drinking alcohol. Not all out dizzy but the world swirled. But it cleared up. The scary part was when my whole right hand fell asleep– because if you have read my previous blogs you may know that my left pinky is often falling a sleep and I feel like it’s a warning sign of an impending episode.

The pressure on my head and chest when they lowered the bed made me feel like I was being crushed, and the strain of standing completely still for 45 minutes made my right toes feel like they were getting frost bite.

It looks like my ekg and other results of the study were normal. Even my blood pressure behaved.

So, with a headache from barely eating, I visited Gayle for a quick meeting (I never quite realized she lives probably 500 steps from the hospital) and then grabbed some wings and fries from Wing Stop. And now I’m completely spent.

What if after all this… maybe the only thing wrong with me is that I’m overweight and out of shape?

Then, I got an email from the service dog people rescheduling my visit to 5/25. And when I got home, I had a birthday card from my mom. And since we got in another ugly disagreement on Mothers’ Day, she sent a bunch of old letters I sent her in my birthday card. No personalized note. No mention of celebrating. Just old mail. It’s a habit she’s had lately. Her own special passive aggressive way of saying “you used to love me.”

My daughter has another way of interpreting her paper trail of past communications.

Whatever it is, it’s exhausting. Ever since my dad passed away, my mom has been even more dramatic. She’s experienced a lot of loss in the last two years, as many of us have. I’m at my wits end. I haven’t had a connection to my father’s family for about six months now, and with all my recent health problems, the lack of familial support weighs heavily on me. It’s terrifying to have a known congenital disability and have something else going on that doesn’t make sense.

And it makes one’s heart hurt when you can turn to your teenaged daughter, your soon-to-be ex-husband, your in-laws and your work friends, but your own mother can’t even give you a courtesy phone call when you are in the hospital. Or, say, maybe she sends some keepsake letters in a birthday card, so even on your birthday, you can be reminded what a disappointment you are and how rather than celebrate you, your mother would rather make your birthday about her.

I just want a mom. I just want a mom who can see who I am without constantly criticizing me, or emotionally blackmailing me, or making snide comments about how I might be living my life. When I was a kid, I idolized my mom. And there’s that little girl inside of me who still wants to.

She grew beautiful flowers. Has a beautiful smile. But I look back on my childhood, and I’ve survived so much and forgiven so much, and laughed off so many things… and to constantly have her blame me for everything that’s wrong with our relationship is just not fair.

Because in my experience as a mother, I want to be there, I want to help, and I would probably spam text my daughter if she ever fell out of contact.

But we’re all different people I guess.

Flirting with control

Angel Ackerman Leave a comment

I have no idea what this blog post will say. I’m only writing it because I came home from work, took my blood pressure, swallowed my medication and made a cup of coffee… and wasn’t sure what I wanted to do this evening. But I knew I wanted to write. So here I am.

I titled it “flirting with control,” because I’m looking at my house and my list of phone calls I need to make (check with physical therapist, reschedule Ob/Gyn, schedule annual service and car inspection, see if I can get a rental car from the insurance company of the person who hit my car in February.) Thinking of the chores I need to do. And everything I want to achieve for the business…

And I realize, everyday I am merely flirting with the idea of having control of my own life.

My blood pressure was 115/73, which is excellently consistent. I have to say I had a few times today where I felt off– so I used the EKG function on my Apple Watch and hit the heart rate button periodically. It’s been two weeks since I had my last “high heart rate scare” and today I saw my heart rate jump from 90 (which was already on the high side for standing at my table at work) to 165 in one movement. Not gradual, just BAM, and back again. It did this at least twice. But the watch registered a 176 also around this time that I didn’t notice.

To be on the safe side, I took the voluntary time off offered for tomorrow.

I don’t feel bad. In fact, I feel 90-95% of myself. But I get tired easily, and I often get a weird sensation that I describe as lightheaded, but it’s more like my body internally swaying. And my ears have been ringing for months and my headaches are getting more frequent.

After hearing about my unfortunate experience at the cardiologist, I have been collecting opinions from people. Some requested, some not.

And among the solicited type of advice came this gem: “You might want to get a second opinion from a FEMALE cardiologist. Its known, researched, and documented that female patients have a greater chance of being untreated for cardiac concerns. Just consider.” That person even recommended a doctor, though by the time I got the name, I had already booked a doctor from my own research.

I don’t know if the average person realizes this, but with the modern computerized booking systems, most hospital networks will allow you to schedule appointments online, even with specialists you haven’t seen, because most physicians have an open scheduling block even if it is only a few appointments once a month.

So I researched female cardiologists affiliated with the hospital with which I routinely deal. I scanned their reviews and quickly discovered that the hospital has a women’s heart center and encourages, at least according to the web site, any woman with concerned to schedule an appointment.

And that’s what I did. I won’t see her until August, but by then all the other specialists will have run their tests and hopefully we will have more answers. And regardless, I want to sit with someone and review what has happened to me, what’s normal, what’s not and what of that is concerning. My current cardiologist doesn’t want to see me again for six months, and his schedule hasn’t been released that far out, so I may not even go back.

I told all of this to someone at work, and he reminded me of something he has said to me in the past. The Lehigh Valley sometimes lacks medical talent. And then he added, “and I suppose I can tell you that I always seek out female physicians.” And proceeded to explain that women have a different attention toward symptoms and how they fit together.

In the meantime, I also have a list of other professionals I want to see as I hash out my own plan for how to care for myself. I know I already mentioned a hospital-affiliated dietician, but I also want to talk to the clinical pharmacist at my doctor’s office because I don’t think I should be or need to be on some of these medications together.

Oh and I got a survey for the smug little doctor man. I gave him a 5/10. I wish I would have recorded my comments which went something like this: “I didn’t ask questions because I couldn’t put my finger on it but he seemed dismissive. I went home and read his notes and realized he had come to conclusions about my symptoms that he did not discuss with me and were based on assumptions made because of my congenital disability which contradicted the concerns of my entire care team. That was a shame as he was a charming man and his office is close to my home.”

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.