Yesterday, I got the scares when I noticed an indication of possible infection in my post-operative surgical wound. When I described the symptom on the phone to my medical team, the scares got worse when they told me to come back to the hospital as soon as possible.
I felt many scares during the ride back to the hospital and as I waited to be seen. These scares reminded me of the countless scares I’ve experienced as I’ve lived my life with an unusual heart condition. These scares have probably helped keep me alive, but they’ve also left some scars.
Somehow, when I get the scares, I usually think it’s my fault — that I’ve done something wrong to cause the problem. For example, I kept telling the medical people yesterday that I’d been following all the directions I’d been given for postoperative care. When they questioned me about that (“Did you get the wound wet?”) I got the scares again.
When it turned out that the scary symptom was a false alarm, the scares receded, temporarily. But, because I’m not perfect, I know scares will return.
How do I deal with these scares? Well, I express them (as I’m doing now). And I remember something somebody said in my Coping and Healing group last week:
“Fearless” doesn’t mean that you never fear. I just means that you fear less.
Do you see scares in my images for today?
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On Do Something Nice Day, I’m going to do something nice for me by telling myself “It’s not your fault.” That should help me deal with scares.
Here’s what I find when I search for “scares” on YouTube:
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Thanks to all who help me deal with scares, especially YOU!
It’s debatable whether yesterday’s VP debate will make a difference in the upcoming USA election.
It is NOT debatable how important an election this is.
Do you see anything debatable in my images for today?
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Despite what the Daily Bitch is saying there, it’s debatable what yawning means during social discourse. When people apologize after yawning, I tell them I believe yawning is a compliment — they are actually trying to become more alert by taking in more oxygen. If you think that’s a debatable response, consider this: do you yawn when you are bored and tired or when you are trying to wake up and be more present?
When I search for “debatable” on YouTube I find this …
Apparently, it’s debatable whether men should be allowed to vote.
It’s debatable how my INR got so high the day before my scheduled pacemaker replacement surgery, when the doctor wanted it to be below 3.1 and I did my best to maintain the perfect 3.0 I had a week ago today. However, numbers and facts are not debatable.
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I hope that proceeding with the surgery tomorrow is non-debatable.
Non-debatable thanks to all who are here for this debatable post, including YOU.
I had a terrible, horrible, no good, very bad day yesterday, as I had a bad night’s sleep worrying that I wouldn’t be able to start my car to bring it very early in the morning to the local dealership, found out before I left that I couldn’t connect my computer to the hospital’s Epic system, finally got my car to start, discovered at the dealership that the problem was a known flaw in the starter button that had been covered by a special warrantee until last month, paid a ridiculous amount of money for the repair, got home and realized the car wasn’t actually fixed when it wouldn’t shut off properly, spent an important meeting talking on the phone with Information Systems trying to connect my home computer to Epic, scrambled to talk to all my patients anyway, found out I couldn’t connect because of another friggin’ form I had missed filling out, managed to get through to the car dealership and was told that the mechanic had mistakenly installed the wrong starter button in my car, got horribly triggered by all this because so many machines weren’t working and I depend on a machine (cardiac pacemaker that needs to be replaced next week) to live, brought the car back in, was told the repair would take hours, got home (without my car) just in time to facilitate my two online therapy groups, and then witnessed other people courageously dealing with terrible, horrible, no good, very bad days.
In group, people talked about this book …
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and then when I had retrieved my car after 8 PM and had a very non-terrible, non-horrible, very good meal prepared by my husband Michael,
While I’m waiting for my photos and images to upload from my phone onto this blog, I’m also waiting to come up with a good enough opening for this post.
The waiting for that is over!
Because of my keen sense of mortality and belief that every day may be my last, I’m not a big fan of waiting. One might say that I’m waiting to become more patient and accepting of waiting.
Along with many other people I know, I’ve been waiting for the weekend and the end of the current heat wave.
I gave up waiting for the Halifax Fringe to respond to my proposal to do my “Group Therapy with Ann” show there this year, so I booked a trip with my son Aaron through the Canadian Rockies. Now I’m waiting to see Vancouver and many other beautiful sites in Canada for the first time. If I do get accepted to the Halifax Fringe, we’ll all be waiting for me to do my show there another year.
Do you see waiting in my images for today?
Rather than waiting for the heat of the day, I took a very early walk yesterday near the company that makes my mechanical heart valve and my pacemaker/defibrillator.Because today is all we have, I’m not waiting for tomorrow to live my best life. This group email, which I received yesterday after many months of waiting, seems to imply that I might have been given a show at the 2024 Halifax Fringe. Now I’m waiting for them to contact me personally so I can tell them I can’t do it this year. Michael’s creative dishes are always worth waiting for.
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Here’s what I find when I search for “waiting” on YouTube.
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If you would like to make a comment about this “waiting” post, what are you waiting for?
When I got home and after I finished my wonderful wonderful HK French toast from Rubato, I looked up “double vision” online.
“Phew! Phew!” I thought. “Looks like I don’t have to go to the emergency room (ER) because my double vision went away in 7 minutes and I didn’t have any of those other symptoms.” However, because I have complicated complicated heart issues, which resulted in my having a Transient Ischaemic Attack (T.I.A.) a year ago when I was on vacation in Georgia, I googled “double vision TIA” and found this:
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Oh no! Oh no! Double vision was on the short list of T.I.A symptoms.
The last last thing I wanted to do on a Saturday was call my hospital and ask about double vision, but I did. After talking to many many people on the phone including a nurse and (finally finally) a doctor, I was told to go to the Emergency Room immediately immediately because of my episode of double vision. As I was preparing to go go to the ER, my beloved beloved husband Michael said, “Do you want me to go with you?”
I had a vision of spending hours hours at the Emergency Room dealing with nurses nurses doctors doctors and tests tests, unsure whether to subject Michael again to the realities realities of being in an ER. After seconds seconds of deliberation, I said, “Yes. Yes. Thanks, Michael, thanks.”
When we got to the Emergency Room I was surprised surprised that there was no no waiting as doctors doctors descended and whisked me away to get a CAT scan (which unfortunately does not entail an actual cat).
A nice nice neurologist did many many tests on me including showing me pictures I had to identify, including two (two!) cactuses. When I called them “cacti” she said, “Now you’re just showing off.”
After the CAT scan, the cacti, and many many other neurological tests, there was waiting waiting as doctors doctors and nurses nurses gave us updates updates about my short short bout of double vision.
Good good news: The CAT scan showed no evidence of a TIA. Yay! Yay!
Strange strange news: My INR blood result was a totally unexpected and low 2.54. 2.54. I couldn’t believe it. That meant I now have to give myself two (two!) injections every day until I get two (two!) readings between 3.0 and 3.5.
2.54. 2.54. It didn’t make sense! 2.54 kept repeating in my brain as Michael and I waited waited, expecting that we could go home soon soon. We were told that a second neurologist would come by soon soon to clear me to leave, so we could feed our 2 (2!) cats and get some dinner.
We waited waited. No no neurologist showed up. I did something I have never never done before: I told a doctor I was thinking of leaving AMA (Against Medical Advice) because no no neurologist was showing up and I was hungry hungry and confused confused about why we were still in the Emergency Room after hours hours hours hours and no no evidence of a T.I.A.
The doctor explained that one of the two (two!) radiologists who had looked at the CAT scan saw an abnormality (abnormality?) and they were waiting waiting for a neurologist to say that the abnormality was within normal normal range.
Another hour hour went by. No no neurologist. Why why? we were asking. A neurologist is looking at the CAT scan, we were told. Waiting waiting. The neurologist is consulting with a neurosurgeon. Waiting waiting. What were they seeing on that damn damn CAT scan?
The doctor came in with some info and a question: “The abnormality is near the nasal cavity. Do you have nosebleeds?” That’s when I realized that the CAT scan did involve an actual cat. I told the doctor that two (two!) years ago our cat Joan scratched me inside my nose which resulted in nosebleeds nosebleeds which were very very impressive and had landed me in the same same Emergency Room. Hoping hoping that info would result in our going home soon soon, we waited waited.
No no neurologist. Why can’t we leave? Why can’t we leave? we asked each other and the doctor. The doctor told us that the concern was that Joan’s scratch may have caused an AVM (an AVM!) in my brain that would need to be treated.
I asked, why why didn’t this cat-related problem show up on the CAT scan I got in Georgia when I had my first TIA a year ago? The doctor said that the reading was subtle subtle and that was why one radiologist was concerned and another one wasn’t. So they still needed clearance from a neurologist to let me go go home.
Michael distracted distracted himself by taking walks outside and encountering resistance resistance from the security guard in the ER whenever he tried to get back in. (“Who are you?” “Who are you here with?” “Who are you?” Who are you here with?”) I distracted distracted myself by asking about favorite flowers on Twitter (Twitter!).
Finally finally, after hours hours of more waiting waiting, we told a nurse we’re sorry sorry but if no neurologist shows up by 11 o’clock, we’re leaving leaving. She said, “I totally understand and I’ll tell the doctor.”
After minutes minutes of more waiting waiting, the doctor walked in and said, “We heard from the neurosurgeon. He said you are okay and good to go.”
Everybody said they were happy happy and sorry sorry about the waiting waiting as we finally finally left the Emergency Room after hours hours hours hours hours hours of waiting waiting to go go home.
No no dinner for us but two (two!) happy cats when we got home and fed them. If Joan had complained complained I might have told her the part she played in everyone waiting waiting for us to to get home.
After all this waiting waiting, here are the rest of my images for this double vision post.
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Here’s the song I keep hearing in my normal (normal!) brain:
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Thanks thanks to Michael, Rubato, the kind kind medical people we encountered yesterday, Foreigner, everyone who loves flowers, and all those who help me with my vision vision every day, including YOU!
Because my mind speeds from one thought to the next, from problems to more problems to possible solutions, from memories of the past to projections into the future, it helps me to slow down.
When I slow down, I can let go of that panicky feeling that I have to act RIGHT NOW to head off negative consequences.
With my extremely rare heart condition (which makes my heart slow down to dangerous levels if I don’t have an implanted cardiac device), I have to slow down on hills and stairs, and I don’t like that. Also, it’s difficult for me to slow down because I’ve always believed I have limited time on this earth. Indeed, earlier this week I started writing a song called “Assuming I’m Going to Die Soon” (which might slow down the sales of my album).
Assuming I’m going to die soon Makes me want to finish this tune. It makes me want to do everything I ever wanted to do, And not waste time Because it’s a crime If you die leaving things That you still want to do.
I need to slow down and think about more lyrics for that song.
Because the overload of pictures and words on my phone caused a slow down and a stop of my photos loading for yesterday’s blog post, I have twice as many images to share with you today, so I hope you can slow down and enjoy them.
For the last few weeks, I’ve been writing a song — “I Don’t Wanna Be Late (Don’t Wanna Be Early Either)” — which is about maintaining happy mediums.
As I’ve realized how many happy mediums we struggle to maintain, I’ve added verse after verse, until the song is now over 13 minutes long.
I assume that people don’t wanna listen to a song that’s too long (or too short), but this morning I’ve written a new verse about my needing to maintain a different happy medium. I won’t record this verse but I will share it with you:
As all my doctors know, to survive I have to be neither.
What’s so bad if my INR’s too low?
Strokes and a clogged mechanical heart valve, Bro.
What’s so bad if the INR’s high?
Over-bleeding, I might be needing to say goodbye.
A year ago, my INR was too low and I had a mini-stroke. Since then, I’ve been working hard to maintain happy mediums for my INR (above 2.7) until this unexpected reading on Sunday:
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No one was happy about this and to regain a happy medium, I’ve injected myself with something called Lovenox, stopped eating greens, and upped my dosage of Coumadin. But we don’t want me to go too high, either, so I’ll be retesting myself this morning.
In the meantime, do you see happy mediums in the rest of my images for today?
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I need to get ready to retest my INR, hoping that nobody has to take me to a doctor today. If the INR is not a happy medium, I’ll be talking like a pirate (“Arrrrggghhhh!”)
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Arrrgghh! Now it’s too high. (It’s suppose to be below 3.5). As some of us suspected, Sunday’s too-low reading was false one. (That’s the first time I’ve experienced that with my home monitor.) I’m happy that I challenged my doctor’s initial plan for me to inject myself twice a day and wait to retest until Friday. And happy that I’m well on my way to restoring my happy medium.
Here’s what I find on YouTube when I search for “happy mediums.”
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Thanks to all who do their best to maintain happy mediums, including YOU!
Today’s Daily Bitch Calendar reminds me of sayings about knowledge like “a little knowledge is a dangerous thing” and “ignorance is bliss.”
I do know what I’m talking about when it comes to living your whole life with a rare heart condition, and it hasn’t always been easy. Yesterday, when I went for an echocardiogram, I was uneasy with the knowledge that the September echo I had in Georgia (when I had a T.I.A. or a “mini-stroke) had indicated there was “severe regurgitation” from my mechanical valve. My long-time cardiologist, Dr. Deeb Salem (who has lots of knowledge), told me that might mean the valve needed to be replaced or that a clot, since dissolved, might have caused temporary regurgitation.
Yesterday I made sure the echocardiogram sonographer had the knowledge about that earlier echo. Based on my experience in medical systems, I had the knowledge that she couldn’t really tell me the results yesterday. I knew I wouldn’t receive the official knowledge of whether or not I needed a new valve and another open heart surgery until later, after somebody with more knowledge had interpreted and documented the results. However, I really wanted reassuring knowledge yesterday after holding this scary knowledge for a while, so while watching and listening to her perform the echo and not having the knowledge to interpret the results as they were happening, I carefully said this: “What would it look like if there were severe regurgitation around a mechanical valve?” and I got the knowledge I wanted when she replied, “Not like what we’re seeing here.”
That knowledge made me very, very happy.
What knowledge is there in my other images for today?
I’m definitely going to celebrate today (with popcorn) my latest good news and the knowledge that I’ve really beaten the odds of life expectancy for my heart condition. When I see Dr. Salem next month, I’m going to ask him what it was like to be my doctor, starting when I was 27, having knowledge like this (which I just found when I googled my heart condition):
Dr. Salem, in all our years of working together, never conveyed that knowledge to me and here I am, about to turn 70! Also, I have the knowledge that some people with CCTGA have made it into their 90s and why shouldn’t I be one of those?
Here’s what I find when I look for “knowledge” on YouTube.
Thanks to all who help me share knowledge through these daily posts, including YOU!
I’ve been spending many hours thinking about how to remodel our upstairs shower, because I want that to be a hideaway.
I don’t want to hide away why that’s so important to me: When I was a child spending too much time alone in the hospital, the private bathroom with a tub, at the end of the long hallway, was really my only hideaway. The rest of the time, I was under the eyes of doctors and nurses, hooked up to a cardiac monitor that beeped out my unusual heartbeat, day and night.
Years ago in therapy, I gave myself the healing assignment of drawing a floor plan of that Children’s Hospital cardiac unit, and the room with the tub stood out as a precious and safe hideaway.
