Old Lady Fat Stage

I'm at a stage in my life I did not anticipate ever entering.  I'm doing things I never expected myself to do.  In a month, I'm going to be participating in an event I never saw myself doing.  What brought on this unexpected activity that has consumed every waking hour for the past 6 weeks?  I've entered what we affectionately refer to in our house as the "old lady fat stage."

My daughter was talking to me about someone being really creative, and she said something that I heard as "She's in her old lady fat stage."  I told her that didn't sound very nice.  After being really puzzled, she repeated what she said.  Old lady CRAFT stage.  That made more sense, but "old lady fat stage" stuck, so now we just joke that I'm in my Old Lady Fat Stage.

In our house, Old Lady Fat Stage means that I have been crafting from the time I wake up until the time I go to bed.  I bought a Cricut and spend hours making things, I paint, I design, and I let the creative juices flow.  It's been very therapeutic, and I am finding something to give me some joy and purpose for the first time in a long time.  This is definitely something that is outside of my comfort zone, and the cognitive load is sometimes exhausting, but it feels good to actually be DOING something.  This is something I can do while elevating my feet, while seated, while still meeting the needs of my physical limitations.  

In a month, my BFF and I are going to do the Arbor Day Craft Show together.  I have never done anything like this before.  I know the stimulation will be both mentally and physically exhausting, that my legs are going to be swollen, discolored, and painful by the end of the day, and my head will very likely be throbbing.  BUT, I know it will be so good to actually spend a few hours out of my house, to see people, to socialize.  Maybe I will see former students, former colleagues.  Maybe I will meet people who are in town for the festivities that further enrich my life.  If nothing else, it means hanging out with my BFF for 8 hours, and that is never a bad thing!

Being away from the teaching community for 2 years now has been the hardest thing I've had to face on this Long Covid journey.  I don't think there will ever be anything that will fulfill me the way teaching did.  However, it does feel good to be excited about things again, to learn new things, to do things that bring me joy, that allow me to be creative, and to put my energy into something that makes me happy.  Our living space has been taken over by crafting, from storage totes full of materials to craft carts filled with vinyl and tools, crafting equipment, and finished items waiting to be displayed next month.  The clutter my new hobby creates clashes with my intense need for my house to be neat and tidy at all times, but I saw a quote once that said something about true growth being uncomfortable.  So, I'll go with that theory while I dive even deeper into my "Old Lady Fat Stage"!

Simplifying My Life: My own personal year in review

As I reflect on the past year, I have come to the conclusion that there is a very real difference between giving back, paying it forward, being there for others, showing love, empathy, and compassion, and self-sacrifice for the sake of giving.  There is a line one can cross where physical, emotional, mental, and even financial health can be sabotaged for the sake of others.  It is time to rid myself of the clutter, both the physical and the mental clutter.  It is time to focus only on the things that feed my mind, my body, and my soul in healthy, positive, and enriching ways.  

It's time to simplify my life.

Old habits die hard, and I know it won't be easy.  But being uncomfortable never is...

This year has been one for the books, to say the least.  January was the typical long, gloomy month that felt like it had 87 days rather than 31. February is a month of birthdays in our family, with 5 people to celebrate, 4 of them within 6 days of each other!  Then came March, when I had to be taken by rescue squad, discovered I was in septic shock, was transferred to Lincoln, and had to process the fact that I almost died.  If we had waited even another 15 minutes to call for the ambulance, I would most likely not be here today to write this blog.  That is a fact I still think about often, something that has been really difficult to fully comprehend.  On the first day of April we were blessed with the most precious gift we could have ever imagined.  Our precious grandbaby was born, and she is everything we ever imagined, and more.  May is the month I checked off the number one item on my bucket list.  I finally saw the ocean.  I even put my toes in the water, sat on the beach and let the waves wash over me, collected dozens and dozens of shells, and basked in the South Carolina sun at Myrtle Beach.  It was the vacation of a lifetime! June was a month of rest and recovery, spending time with our new grandbaby and basking in our post-vacation glow.

The second half of the year had just as many significant events as the first half.  July was quiet, but then August rolled in, and life presented us with new challenges.  On August 15th, my husband was diagnosed with a motor neuron disease believed to be ALS.  Though he does not have the lab-confirmed markers of ALS, and some of his symptoms are atypical of ALS, neurologists seem to not know what else to call it, so that is his official diagnosis.  That same evening I began running a high fever, and my symptoms were very similar to the symptoms I'd had in March when I was septic.  I then began to have the most painful experience of my life.  I would have happily given birth every single day rather than experience the excruciating pain I endured for 4 full weeks.  It began in my right shoulder blade, traveled across to the center, into the left shoulder blade, and then back to the right again.  I was seen at 2 different hospitals in 2 different cities, and all testing came back inconclusive.  To this day, we do not know what caused this horrific pain, but I hope and pray I never experience anything like that ever again.  

September was a huge milestone in my life as I celebrated my 50th birthday.  It's so odd to turn 50, yet feel like I can't possibly be a day over 30.  How does time go so fast?  I threw myself a party, and I was blessed with friends and family in attendance to celebrate with me.  In October, my husband and I celebrated the 26th anniversary of our first date.  It's so weird to realize I have spent over half of my life with this man, and even more difficult to believe our daughter is the same age I was when we first met and became friends!  

I received a book from my best friend for my birthday.  It shows 5000 places to visit across all 50 states.  We used suggestions from the book to plan a road trip in November.  We were in a total of 6 states (Nebraska, Iowa, South Dakota, North Dakota, Minnesota, and Montana), all within a 48-hour time frame.  Along with crossing off another bucket list item, we spent 4 days road-tripping through the Badlands, the Black Hills, 2 national parks, and the sand hills.  It was a fast-paced vacation to literally see as much as we could see and add as many states to our list of visited places as we possibly could.  It was not the relaxing southern vacation we took in May, but we saw a lot of beautiful terrain and made more memories together.  

When we hit December, it just didn't really feel like Christmas.  We decorated our house, put up our lights, and I wrapped the dozens upon dozens of gifts I had spent September and October purchasing so that I would be ready for the holidays without feeling too rushed and overwhelmed.  However, once the gifts had been given, the Christmas goodies eaten, and the thank you cards written, I was left to reflect over the next week.  What I realized was that I was left with an empty, hollow feeling in my chest.  

I realized as I reflected over the year that I felt very overwhelmed by so much.  I felt the immediate need to purge.  I decided to get rid of kitchen items I hadn't used in at least 2 years.  I donated or threw away shoes I no longer wore, clothes I hadn't touched in years, dog toys that filled a 30-gallon garbage bag to overflowing.  I checked the expiration dates on all the products in my pantry and cabinets and threw out things that had expired.  I bought new dressers, nightstands, and lamps to both update and save some space our old furniture had taken up in our cramped bedroom.   

While purging and organizing the physical aspects of my home, I had a lot of time to reflect on the year as well.  I thought about the hardships we'd faced as well as the exciting things we'd experienced.  I thought about those who reached out to us to check in, to offer a helping hand, to ask how we were feeling, and to check on our emotional well-being as well as our physical health.  I thought about those who were excited to see us cross things off our bucket list, who were excited to see us have good things happen to us, who are always in our corner, always rooting for us, always supporting us in both the good and bad times.  

Those are our people.  

Those who make me feel defensive rather than at ease, who do not openly show their support for us, who are not rooting for us, I am no longer going to put forth the effort.  I have tried to live by "Be the Energy You Want to Attract," and I still will do that, to an extent.  But I am no longer going to put forth energy that is not given back.  I will no longer be the one to always reach out first, to offer unsolicited updates on our lives, to check in with people who never check in with us.  

I have now, as of December 2024, hit the 3-year mark of living with Long Covid.  My husband has been living with chronic pain and neuropathy in his right arm for almost 2 1/2 years, which has been accompanied by shooting pain in his right hip for almost a year now.  With the unknowns of his lower motor neuron disease diagnosis and the unknowns of the long-term effects of Long Covid, along with my close call with sepsis, we have been giving glaring reminders that life is too short not to do what we can when we can.  Life is also too short to give precious time and energy to anything that is not deserving of it.  

With this realization came the conclusion that 2025 is going to be about removing the clutter and simplifying my life.   

Catastrophizing, Anticipatory Anxiety, or just a Worry Wart?

I've been a worrier my whole life.  My grandma was a worrier too, so I'm sure that's where I got it.  (Yes, I mean WORRIER, not warrior).  I'd see her worry, so then I'd also worry.  I say a prayer every time we pull onto the highway.  I say a prayer when I know one of my kids, my husband, or another loved one is on the road, heading somewhere, because I'm so scared of them having an accident.  I feel anxious, stressed, and have this feeling of impending doom every time one of my loved ones leaves the house to go any further than across town to get groceries or some other local task.  

According to the American Psychological Association (APA) Dictionary of Psychology, Anticipatory Anxiety is worry or apprehension about an upcoming event or situation because of the possibility of a negative outcome, such as danger, misfortune, or adverse judgment by others. The worry or apprehension is often accompanied by somatic symptoms of tension. The APA describes people who always think that the worst possible outcome will occur from a particular action or in a particular situation as catastrophizing.  Dictionary.com defines worry warts as people who tend to worry habitually and often needlessly.  

I feel like I fit all of these definitions if I am being honest.  Every scenario in my life consists of me imagining the absolute worst thing that could happen.  I think it's because my luck always seems to be bad luck.  If something is going to happen, it's going to happen to us.  We are going to choose the box that is missing parts, get the random defective car battery, the box of nuggets with one nugget missing. No risk factors for an ectopic pregnancy, yet I had one.  No obvious signs of any type of infection, yet I went into septic shock.  So, when we began to plan our first "across-the-country vacation" nine months in advance, of course, I'm going to be concerned that things are going to go wrong.  

Every time we leave the house, I worry something is going to happen to cause it not to happen.  And of course, it's always horrible, gruesome thoughts that I'm imagining; never just a minor inconvenience.  By the time it's ever time for our vacation to actually happen, I might be too stressed and anxious to even enjoy it!  Because then of course, I'm going to worry about the freak things that could happen to us on our way there or while at our destination.

Will one of us get attacked by a shark, stung by a jellyfish, or die from the poison of some freakishly-shaped sea urchin disguised as a piece of seaweed?  Will I somehow fall to my death off our 20th-story balcony, or will a car from our sky wheel ride fall into the ocean?  And that's only if the pier the restaurant we are eating at sits on doesn't collapse into the sea first!  And all of that is if we even MAKE IT to our destination in one piece.  And before we can leave for our destination, we have to have survived ALL NINE of the months leading up to it.  

Maybe it's hard for me to accept that good things are going to happen because they seem too good to be true.  I hear about other people doing all these exciting things, but it doesn't seem real that we could be doing them too.  Checking things off my bucket list has never felt attainable to me; I always thought of a bucket list as a list of the things you wish you could do, but never actually will get to do in your lifetime.  I think now, if I really do make it TO, THROUGH, AND HOME FROM this first bucket list trip, maybe I will see it differently.  Maybe I will actually look at life differently.  Maybe things I never thought were possible really can come true. 

Speaking of Bucket Lists, I'd love to read some of yours!  Please feel free to comment below, and don't forget your name so I know whose bucket lists I'm reading!  Here are the top five things on mine!

 

People Suck and Other Revelations...

I began this blog (and wrote the title of this blog) October 30th, and now, today, December 10th, I am just now coming back to it.  My therapist has been waiting patiently for me to finish and post this blog, and I have tried several times, but just couldn't figure out exactly what I needed to say.  It was all in my head, but getting it out into words is something I've been struggling with...But, as I sit here at 4:30 A.M., still dark outside, my cats roaming around trying to figure out why I'm up to interrupt their shenanigans, and my dog still sleeping soundly in our room (along with my husband), I'm attempting this blog again...

Last night as I scrolled through Facebook, I came across an ad for Madonna Rehabilitation Long Covid Clinic.  I liked and shared it because I not only attended the Madonna Long Covid Clinic for 3 months, but still utilize their services as well.  After sharing the ad, I noticed several laughing emoji reactions on the original post (not mine), and I saw that 19 people had reacted in that way.  I then began reading the comments people were posting on the Madonna Long Covid Clinic page and became instantly emotional.  Words like "psychosomatic symptoms" and  "placebo effect" and "another fibromyalgia" along with conspiracy theories about the harmful lasting effects of vaccinations flooded the comments.  

I know I need to learn to ignore these types of things, but it's just hard sometimes.  When something has completely taken your previous way of life from you, how do you just let things like that slide off your back?  What I also wish I could ask each of those people mocking Long Covid is how they explain how the estimated 9 million people in the U.S. alone, and an estimated 65 million people around the world who have been diagnosed with symptoms of Long Covid if it's just something made up in our heads.  I would ask them to explain how we all just happened to have gone from perfectly healthy, active people living our best lives to being suddenly so debilitatingly ill that our careers, family life, social life, and physical well-being have been completely destroyed.  How do we all just KNOW what symptoms to describe that replicate the symptoms of others who are also experiencing them?  There's no other explanation for it.  Long Covid is real and it's an ugly, cruel illness that even the most renowned medical experts are still struggling to figure out.  Though many people do not have any abnormal test results, others of us do, and these clearly cannot be "faked" or "made up". 

Though many people with Long Covid will go through a battery of tests with no definitive answers to their symptoms, I personally have had an MRI that showed some areas of white matter on specific areas of my brain that are advanced for my age.  This would explain the split of over 40 points on my psychological evaluation between my attention/concentration/working memory and other areas of my cognitive brain function. For those who do not know exactly what those types of scores mean, when there is a large "gap" or split between scores, it means different functions of the brain are basically working at different paces or capacities which can make some aspects of my cognitive world really difficult.  

A fact I don't think most people outside of the Long Covid world realize is that those who have cognitive and psychological issues associated with Long Covid present very similarly to people who have suffered a traumatic brain injury (TBI), therefore, behavioral cognitive therapy is used in much the same way for Long Covid patients and TBI patients.  There are physical brain symptoms (such as advanced white matter, micro clots, etc.) that can contribute to these similarities, but there is also the psychological trauma that also plays a large part in those similarities.  Having an illness, whether mild in nature or so severe hospitalization was necessary, which results in major life changes, causes a lot of psychological trauma leading to anxiety, depression, and cognitive function deficiencies.  Many symptoms may also present closely with post-traumatic stress disorder (PTSD).  A sudden medical event that impacts every aspect of your life is traumatic, and dealing with the sudden and unexpected repercussions of that can be devastating...traumatic. 

Something I have really noticed regarding memory is that I can name off almost every student I had from the start of my career in 2001 to the end of the 20/21 school year.  However, I have a very difficult time coming up with the names of the students I had during my final year of teaching, (the 21/22 school year) which was the year I got Covid and began having Long Covid symptoms.  I recognize their faces, but I cannot come up with their names.  It's horribly frustrating and makes me feel so guilty too. 

Another thing that has been really difficult for me is word-finding.  I know it appears that I have no problem with that when reading my blogs, texts, etc.  However, the part no one outside of my immediate family sees is the amount of time I use googling "words that mean_______" or "synonyms of_______" because I just cannot find the exact word I'm looking for.  I can tell you what it is similar to, what its definition is, and how I want to use it in my sentence, but the word itself is just GONE.  I also have begun having another odd issue come up.  When writing/typing, I will often use the wrong form of a word, even when I'm picturing the word in my head correctly.  (And yes, since dealing with these cognitive changes, I have discovered that when I am writing/typing, I visualize the words as I'm typing/writing them, which I did not realize I had done until all of these new changes came about.). For example, I may mean "their", I'm picturing "t-h-e-i-r", but I type "t-h-e-r-e" and have to delete and retype it.  Or, I am trying to say "meet" and I type "meat".  The examples go on and on.  I do it with most homophones on a daily basis. It's as though my brain and my hands aren't communicating correctly.  I hate it too, because, as an English teacher and proud "wordsmith" by my own recognition, making those types of errors, and KNOWING the correct use of these words, is incredibly frustrating, especially when I don't catch the errors until after I've hit "send". 

Though this blog ended up going in a different direction than I'd intended when I started it 6 weeks ago, I finally finished it.  There is just so much I wish people understood, so much I wish even I understood about the changes that have occurred over these past 2 years.  But, maybe someone reading this will be able to relate, maybe they will realize they aren't quite so alone, and maybe it will help them to feel a little less isolated in their own battle.  If that is the case, then I've done what I have hoped and intended to do with my blog.

If any of you have a true interest in understanding Long Covid, want to learn more, or would like to find support for your own symptoms or show support for a loved one with Long Covid, I encourage you to join a Facebook Long Covid group.  A good, legit group I would recommend is: https://www.facebook.com/groups/COVID19survivorcorps/

'Til next time...

New Blog, Old Issue: Bias in Healthcare

I wrote a blog a few months back called "Overweight and Out of Shape".  After writing that blog I began doing some research on bias in healthcare, and the information I found was pretty astounding.  Bias against patients who are overweight is clearly an issue, but there is bias against women, against men, against people of color.  These biases are real issues in our healthcare system, and it's something we all need to speak out about.  We need to advocate for not only ourselves, but our fellow patients who also need to have fair, unbiased treatment.  

I recently developed a serious infection in my leg, one that could have quickly turned into a life-threatening situation had I not gone to the ER when I did.  I have severe edema in my legs, edema that has developed into lymphedema over the course of the past 2 years.  With this comes complications; one being severe skin rashes that can break open and weep lymphatic fluid.  These open wounds are ideal breeding grounds for bacteria.  Despite my best efforts, I developed cellulitis in my left leg because of this weeping wound.  

The frustrating part of this ordeal is that I contacted my cardiac P.A. a week prior to my ER visit.  I explained that my edema was at its worst, that despite taking my prescribed diuretics in the variety of combinations and dosing options we'd tried, I was more swollen than ever, that the weeping wounds on my leg were getting worse instead of better.  Her response was to make an appointment with one of two cardiologists within her practice who I'd seen previously, or to see the nutritionist.  

And there began my "bias in healthcare" dilemma.  

Cardiologist #1 had spoken to me like I was an idiot.  He was convinced I was diabetic and that my edema was because I was in active heart failure.  (Blood tests proved otherwise an hour later, but I got no apology or even acknowledgment of his errors in his assumptions.)  The next day, while consulting with me after my double heart catheterization, when I told him we had been able to get me down to "x amount" pounds of fluid off 4 months previously with heavy dose diuretics, but it all came right back, he accused me of being delusional, insisting I was claiming to have 90 pounds of fluid, which was absolutely ridiculous.  I told him no, it was only 40 pounds of excess fluid.  He vehemently insisted I weighed 50 pounds more than I did.  After my insistence, he pulled out his phone, pulled up my chart, saw that the weight I told him was correct, and ended the conversation by just leaving my hospital room.

Cardiologist #2 was very dismissive.  When I expressed concern over my edema not going down despite diuretics, his response was that everyone is made of 75% water.  Yes, but not everyone is carrying it around in their legs and abdomen to the point of having serious mobility issues...

Next, I saw a nutritionist.  She set me up with a program to log everything I ate, to track calories, fat, carbs, sodium, protein, specific vitamins, etc.  These were all things I'd been doing for the past 14 years using another popular free calorie-counting app, but I was compliant, did exactly what she'd asked of me.  The booklet she provided said, "Log without judgment" so that's what I did.  I logged absolutely every bite I took.  If I had a day of emotional eating and indulged in 4 Swiss cake rolls, I logged it because I knew there was no use in being dishonest.  That wasn't going to help HER help ME.  When I went to my next appointment, we went over my food logs, I told her I was brutally honest about everything, even on days I didn't want to be.  She commended me for that.  However, when I got home and read her notes from the visit on my online chart, she wrote that I was consuming anywhere from 4,000 to 6,000 calories a day on days that I gave in to emotional eating.  This was absolutely untrue.  My highest day ever had been 3996, and I was completely honest with her about that day, what I ate, and what events had caused me to turn to emotional eating that day.  I felt as though she didn't believe me, and was putting her presumptions in my notes even though I'd been completely honest with her despite my hesitation.  I felt a complete lack of trust in her and in the program, so I canceled my next appointment, and have not scheduled any upcoming appointments either. 

When looking further into bias in healthcare, I came across so many posts, blogs, and articles about a variety of biases people encounter every day.  I found stories about women of color being told they were predisposed to certain health conditions without actually investigating the specific symptoms they were there to address.  Others were dismissed as being menopausal rather than testing for other possible causes of symptoms.  Stress was also blamed for many patient complaints, rather than looking into other reasons patients had specific symptoms.  Many articles and personal anecdotes discussed that their stress and anxiety were caused BECAUSE OF their symptoms and lack of support from their providers rather than their symptoms being a result of stress and anxiety.  And then, of course, there was the weight bias.  Rather than acknowledging that patients of average weight often have the same health issues or ailments that overweight patients have, if a patient is overweight, the common response from providers is to suggest weight loss as a remedy to their symptoms.  

Research on the impact of obesity bias in healthcare shows an elevated risk of psychological reactions such as eating disorders, unhealthy behaviors, anxiety, and depression which can negatively affect major vital signs.  This bias also leads to resistance in seeking medical care and a lack of trust in healthcare providers, resulting in insufficient treatment for patient health and well-being.

As I stated in my original blog on this topic, I can't deny being overweight, and I'm certainly no athlete.  But you know what else?  I was "overweight and out of shape" when I graduated high school in 1992, when I took a 10-mile walking tour of D.C. in 2009, and the summer of 2021 when I was living my best life.  I was "overweight and out of shape" when I was feeling ill in November 2021, and in December 2021, and still in February 2022, when I was officially diagnosed with Long Covid.  

But, is that what's "wrong" with me?  No.  Is this "overweight and out of shape" identity something I've only taken on since being home with Covid for those 3 weeks almost 2 years ago?  Nope, not accurate either.  Should ALL healthcare providers diagnose patients equally rather than conclusively basing treatment plans on physical appearance?  Absolutely, because last I checked, just being "overweight and out of shape" never stopped me from living my best life. 

But Long Covid, and all of the many physical, emotional, and neurological symptoms that go with it definitely have.

Those are the things that a conservative estimate of 65 million people around the world with Long Covid are begging to be given; providers who look at them as individual people with very real symptoms that are tied to a horrible disease none of us want to be living with, a disease that has nothing to do with race, gender, age, weight, or socioeconomic class.

Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21. 133-146 (2023). https://doi.org/10.1038/s4159-022-00846-2