Tag fall risk

Tying for gold at Lucky Strokes Mini Golf

Angel Ackerman Leave a comment

Earlier this week, I got a text message from Mr. Accordion.

Mr. Accordion and I were roommates during my tenure at a certain nonprofit that suffered from toxic management. It’s funny though how life leads a person on a meandering path, and we end up gaining things from experiences that hurt us at the time. I have current clients who connected with me because of that job. I ended up at Stitch Fix because of that job. And I published my novel as a distraction when I lost that job. So many of the circumstances that led to the success of Parisian Phoenix Publishing launched from a very stressful and agonizing work environment, where I shared an office with Mr. Accordion.

Mr. Accordion retired, and he has spent the last four years at various part-time jobs and spending time with his family. I have only known him about five years, but in that time he has always had a joke to share, leads on good food, and a genuine care for other people.

And the other day he invited Eva-the-no-longer-a-teenager and I for pizza and mini-golf. And who am I to say no to pizza and mini-golf? The venue in question was Lucky Strokes mini golf and driving range and Isabella’s Pizza.

They had a strange, vintage upholstered chair in the parking lot with a “free” sign and a school bus with a giant target painted on it in the back of the driving range, if I saw correctly at 175 yards.

The no-longer-a-teenager and I arrived and ordered a medium pizza with capicola and artichokes.

And after some conversation with Mr. Accordion, Eva and I hit the golf range. Now, I did set my Apple Watch to “golf” (and Omada gave me credit for “sports”). It took us 37 minutes to play all 18 holes. (In part because the people ahead of us where having some intense discussion about his marriage and how his wife wasn’t taking the couples counseling seriously. At least, that’s what Eva heard. How she heard that without her hearing aids, I don’t know.

It looked to me like the worst first date ever. She looked disinterested with her back turned, sipping her soda. He would not shut up about himself or his wife. And every time you looked at them, he was standing over to the side with his putter over his shoulder and his ball on the other side of the green.

Immediately, Eva noticed two things:

  1. I don’t even remotely line up the putter correctly.
  2. I was swarmed by small harmless bee creatures.

And then while following my little pink ball around I fell up an incline and ended up crawling around the artificial turf on my hands and knees. Speaking of my knees, my knees and legs refused enough to let me get the ball out of the hole at each green.

Instead of keeping traditional score, we kept score of who landed each hole first, and who won each hole. We ended up trying, 8 holes each with two ties. None of which would have been possible without Eva’s golfing lessons. And her tendency to sometimes hit the ball so hard I feared she might have landed it on the next green.

And I think I had a hole in one, but now I don’t remember.

On the way home we stopped at The Spot for ice cream. I haven’t been to The Spot since my Stitch Fix days.

I had a dusty road sundae.

Never a good idea to perform CPR on oneself

Angel Ackerman Leave a comment

I have been staring at this blank screen for two days– staring at nothing but a title. Yes, the one you see up there.

As many of you already know I am a perpetual fall risk.

I have been trying for about two years to study and track when I fall. I have monitored the effects of my blood pressure, my allergies and even sodium, and now upon looking at the fall data from my Apple Watch I suspect hormones and the full moon may have an impact. Like the ocean and the tides, I suppose.

Sunporch as a cat haven

It has been almost a year since I bought this Apple Watch and it has been a year, a week and a couple days since I was last discharged from the hospital– my first ever hospitalization for a fall.

On Sunday, I went out to my sunporch, and a cat had vomited on one of my new chairs so I went to clean it. And after scrubbing the cat vomit out of the chair, I went to throw it into the garbage can that we keep on the porch as part of our package opening station.

Now, this is where I understand but I don’t understand. I knew and saw that the metal supports for one of the dog’s place-stay platforms were in front of the garbage can. Somehow, I caught my foot on it (Can we blame cerebral palsy or could it have happened to anyone?) and I tripped. Unable to catch my balance, I fell.

Sunporch last Christmas

I landed with my hands in fists against my sternum, as if giving CPR to myself. I landed on a large block of stone that forms the step to my front door. The edge of the stone block hit underneath my breasts at the spot where a bra band should be, but I was in my pajamas.

I knocked my elbow pretty badly (it’s bruised and bumpy) and I cut my leg and bruised my foot. But that blow to my chest– my full body weight– knocked the wind out of me. I walked into the house slowly and somehow ended up on the floor curled up against the dishwasher crying in pain as I pulled up my pajamas to see if I had any visible damage.

I did not.

But it hurt. It left my nerves shaken as these falls often do and it was VERY uncomfortable to sleep that night. I woke up in the morning curled up on my side so I took that as a good sign. It hurt mildly to stretch my arms or cough or laugh, but all-in-all I felt okay.

Today, I woke up feeling worse. I put on a workout top that supports everything so the weight of my breasts doesn’t add more discomfort. But it definitely hurts worse. And walking is uncomfortable. Walking fast enough and long enough to increase my breathing often makes me stop and wait.

On top of all that, I got on a scale today. I’ve gained another 10 pounds. I wish I could say I didn’t know how that was possible. But I know. I can’t believe I’ve gained another 10 pounds in about three weeks.

So I went back to calorie counting today. And more importantly nutrient and macro “counting.”

Hopefully tomorrow will be less painful– because I have a job interview for a little something that might fit nicely into my life.

The Reunion Dilemma

Angel Ackerman Leave a comment

Tonight is my 30th High School Reunion, scheduled in the casual and amazing environment of Richmond Brewing. Our classmates own the establishment and have agreed to let us assemble and celebrate without a lot of formal to-do.

But I don’t know if I’m going to go.

I was on the reunion committee. I love the food and the beer at Richmond Brewing. It should be fun.

But I’m stressed and if I’m honest, I’m scared. And I think this is probably the first time I really wished my service dog was already here. Because having that dog would relieve some of the physical barriers to attending, which might help my emotional issues.

I’m already showered and dressed and ready to mingle. But I’m struggling with my own mobility today– which if you aren’t a regular reader I have diplegic spastic cerebral palsy which means I have issues controlling my legs. Last weekend I took a medium fall. I didn’t do any permanent damage, though I did damage my expensive glasses, probably delayed healing of my sprained right pinky, and got myself some nasty bruises and bumps on the head.

But today I fell again. This is is going to sound ridiculous (my trainer Andrew can probably vouch for me here, I think he’s seen it happen) but I can’t pick up my feet today. Primarily my right one. It’s dragging. It got caught in the cracks between the sidewalk and down I went. No damage, my Apple Watch didn’t even alert.

Which is probably a good thing as I’ve been enrolled in the Women’s Heart Health and Mobility Study at Brigham & Women’s Hospital in Massachusetts and when I fall and my watch registers it, they call to check on me. I talked with them for a half hour on Monday.

I fell on the way to the gym, and my workout went fine, although at the same time, I struggled with some muscle control.

I went over to the Christ United Methodist Church for their craft and vendor fair where Joe Swarctz, our fearless illustrator and the creator of Echo City Capers, was selling the latest in children’s books. I didn’t fall, but every bump on the sidewalk or imperfection in the floor challenged my balance.

The Teenager has to work tonight, so I’ll be on my own for the reunion tonight. And I’m scared. It’s about 30 minutes up there, and with my recent layoff gas money is tight, plus I won’t be able to have a beer. And it would have been my father’s 75th birthday today, if he were still with us, so that has me in a horrible, dejected mood.

If I had my service dog, I would feel safer. I would at least feel more secure about my ability to navigate walking. And I would know that I would have another living thing there that could help me if something did happen. I know that all of my classmates at the Reunion would be helpful, but there’s a certain comfort from those who already know what you need and how to help. Because it’s a dreadful feeling when you have an accident in public, and people want to help and no one quite knows what to do or they do too much or the wrong thing.

I’m not sure what to do, but I know the choice is stressing me out.

But if my balance is already significantly compromised, I don’t know if traipsing around an old barn is a good idea.

4 months and 1 day

Angel Ackerman 3 Comments

I want to keep this one short. I spent a couple hours on a Substack newsletter for Parisian Phoenix (read that here), handled some business, watched some TV, did some job applications and folded some wash. I’m starting a new project for an important client tomorrow and attending some classes on websites, Google and SEO practices.

Yesterday, I attended the Greater Lehigh Valley Writers Group meeting, then ran up to Stroudsburg to support William Prystauk’s horror novel release for The Hanging Girl. From there, the teenager and I stopped at Wawa for a snack before heading to The End: A Bookstore to meet up with Ralph and Joe of Echo City Capers fame.

Speaking of fame, Joe made an appearance on Channel 69 Weekend Edition of the Morning News.

But then, upon leaving The End, the Teenager hopped over a tiny pile of stones to avoid going the long way to the parking lot. I followed. And my good/stronger ankle went out on me, causing me to slip in my slightly healed walking boots, and somehow I bounced off Joe’s parked car, narrowly avoided a concrete parker marking with rebar sticking out of it and smashed my right hand, nose, glasses and face into the macadam.

It’s been four months and a day since my last fall.

My gait was perfect. My blood pressure has been trending higher, but remains in the neighborhood of 120/70 vs the former 110/65. My heartrate and EKG are fine. I just fell. Tired from overbooking, stress from losing my job, awkwardness because of the rain, or all of it who knows. Life with cerebral palsy. Heading home with a fat lip and a bloody nose.

I did take a chunk out of my expensive glasses. The metal frame of the bridge cut up my nose. And the hand I f*cked up when I dove down the steps March 1 at Stitch Fix, it’s set back a ways on recovery. It’s torn up again.

But sometimes you have to remind yourself to be grateful.

Speaking of grateful, if you follow my Instagram you may have seen this fabulous hot lunch of Maruchen Teriyaki noodles, peas, Lightlife tempeh and fresh spinach I made for The Teenager and I at a cost of about $2.50 per serving. And 30+ grams of protein.

I am also grateful that Giant has a store brand version of Bush’s Vegetarian Baked Beans as the family size can of Bush’s was on sale for $3.09 and the generic was $1.69. The Teenager says the generic tasted exactly the same. I can’t give it that much of a rave review, but I can report it was a successful substitution. What disappointed me though was the honey beans I bought on clearance at Grocery Outlet.

Friday food and health

Angel Ackerman Leave a comment

This will be a shorter blog entry to record my health update. And my food diary. I hope to follow it up with a real essay. On being prepared for the unexpected side of advocating for yourself when it comes to your needs and your disability.

I woke up even more lightheaded today and by 9 a.m. I felt like I might either fall over or faint, so I took my intermittent medical leave and clocked out at 9:14 a.m. When I got home, I took a one hour nap, after which I could at least hold my head up without swaying. My heart rate was experiencing some highs and lows– highs of 130, lows of 44, within a short range. My blood pressure was111/67.

Food “today”:

  • 7:30 p.m. yesterday: after not having dinner last night, I watched an old episode from season 2 of Rescue 9-1-1 and ate about 2.5 servings of Sahale Asian Sesame Edamame Bean & Nut Mix– with around 15% of your RDA in sodium and 6 grams of protein per serving.
  • 4:30 a.m. Don’t judge me, but this morning I had about 10 ounces of water and a Coke Zero for breakfast. Despite having almost 8 hours sleep, I could still barely get myself out the door.
  • 8:30 a.m. I was hoping food would help me feel better. I had grabbed the Brekki oats again as I ran out the door, but today they didn’t have my Greek yogurt in the breakroom so I grabbed a serving of JIF peanut butter to fatten up my dairy-free, gluten-free, vegan and goodness knows what other trend oats.
  • 12:30 p.m. After my nap, I reheated my leftover pasta with jarred red sauce, a tad of mozzarella, and some tiny pieces of meatloaf for meatballs. My water level for the day, besides the 10 ounces this morning, is an additional 24 ounces.
  • 1 p.m. peppermint coffee with half and half.

More good news: I passed my home visit

Angel Ackerman Leave a comment

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.

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.”

Smug little doctor man

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I might have to fire my cardiologist.

He’s personable and easy on the eyes, but he certainly had his decisions made without listening to what I had to say. And when I got home and read his notes… I don’t know if I can say I felt betrayed or even insulted. I knew what was happening while I was there. It was a gut reaction and I felt myself shutting down.

He said I was fine, my heart monitor was fine, and my EKG was fine, and then he asked if I had any more episodes. I asked for clarification on what he meant by episode and explained that as of last week my heart rate had calmed by about 20 beats per minute. And that I had two more unexplained episodes of lightheadedness that almost ended in falls.

I pointed out that I wrote everything down if he had any questions about my symptoms and also said that I bought an Apple Watch.

He didn’t seem interested in any of it, only in my episode of a-fib. And then he noticed that my primary care doctor had ordered a tilt table test. “That’s odd,” he said, looking at my record.

“He wants to rule out POTS,” I said.

He gave a little nose grunt of disapproval.

“Do you have any questions?” he asked.

Not that I was willing to ask. Based on how he seemed to be judging my primary care physician there was no way in hell I was asking questions of this man.

When I read his summary of our visit when I looked at my online chart, he blatantly called out my primary care physician for considering POTS and said my symptoms were not consistent with that, and blamed my falls on my poor balance.

I might have cerebral palsy, but I don’t have “poor” balance. It’s not “good” but it’s not “poor” and I have the physical therapy records to prove it. Actually, I was released from physical therapy today. When these episodes happen, I can feel that the problem is not my legs. So my heart looks fine, and I’m very happy about that, but I’m angry that he just attributed the whole stint in the hospital as caused by my poor balance. The night of the accident I had been showing off to my trainer Andrew how well I could stand on one leg.

When I read his notes I got even more upset, because he’s blaming my orthostatic hypotension on dehydration and makes it sound as if I don’t drink water. I said symptoms are worse on the weekend, probably because I don’t drink as much water. I drink about 60 ounces at work alone, which means on a typical weekday I drink about 80 hours of water, maybe 8 ounces of another beverage and 12 ounces of coffee. Subtract about 60 ounces water off that on Saturday and Sunday.

And he also says I drink more now, especially when my blood pressure is low, and what I said was that I keep an electrolyte powder by my bed and mix a portion of that to drink in the morning if my blood pressure drops, as suggested by my primary care physician.

So I looked at my ekg– my heart shows a normal sinus rhythm and arrhythmia.

I emailed my primary care doctor and said the cardiologist is not a match and after I get the next couple weeks of appointments done, I want to follow up with him (my PCP) to talk about my medications. And I’m also thinking of asking about a registered dietician and some nutritional resources.

Today my heart rate is up. My blood pressure is low. I have headaches and everything in my body hurts.