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.   

The Day I Almost Died

Three weeks ago I almost died.  Not figuratively.  Not metaphorically.  Literally.  I LITERALLY almost died 3 weeks ago...and I am still trying to figure out what to do with the emotions I've been experiencing ever since it happened...

Wow...where to even begin...I've been trying to write this blog for almost 3 weeks, but something very strange and unfamiliar has been happening to me each time I sit down and work on it...I'm at a loss for words.  This is not an experience that is even slightly familiar to me because I am NEVER at a loss for words.  Never. Ever.  

Most of us, unfortunately, know what it feels like to see someone we love become ill or pass away.  But, rarely does anyone ever have the experience of feeling their own impending death.  It's an experience I wish I hadn't had.  And I'm discovering that it has rocked me to my core.  I'm not really sure what to do with the feelings, emotions, fears, and thoughts I've had over these past 3 weeks...A lot of my memories of that night are blurry.  Parts are missing, I have lapses in time, and I've also discovered that many of my memories of that night are mirrored.  I have asked my family about the details of that night, and am learning of more and more things I thought were reality, but in fact, are not exactly as I recall them...

I woke up on Thursday, February 29th, and I felt a little blah, had a bit of a headache, but nothing horrible.  I thought it was just the post-exertional malaise (PEM) from a really fun, but busy previous week and weekend.  This is not something out of the ordinary for someone with Long Covid so I didn't think much of it.  However, I woke up at 5:40 A.M. Friday morning absolutely freezing.  I covered up with an extra blanket and burrowed under the covers.  When my husband woke up at 6:30, he took my temperature and it was high, 103.4. I had planned to go out of town with him for an appointment, but stayed home to try to sleep off my headache and fever instead.  

I finally drug myself out of bed around 12:30, took some ibuprofen, and settled into the recliner for the rest of the afternoon.  My headache and fever were both gone by 2:00, and I felt decent other than some body aches.  I was sure I must be coming down with the flu.  I took it easy the rest of the day, and even had a couple of hours where I felt relatively "fine".  Then, around midnight, when I was about to head to bed, I got a bit chilled.  I covered up with a blanket, asked my husband for another blanket and some ibuprofen, and decided to just wait it out before going to bed.  That's when things got ugly.

My husband went to hang up some laundry and my daughter headed off to bed.  I stayed in the living room, in my recliner, alone.  That's when I began shaking uncontrollably.  My teeth were clanging together, I was unable to sit still in my chair, and the shivering grew more and more intense.  I know now that what I was experiencing was rigors, which was an indication of worse things to come.  

My husband came out to see if I was ready for bed and found me in that state.    My breathing was becoming more difficult, and I was becoming more and more light-headed.

I began repeating, "Help me!" over and over as the rigors became more intense, but my husband couldn't hear and/or understand me.  My daughter came out of her room and asked if I was having a seizure.  She is the one who noticed the backs of my arms were blue.  My husband then saw this and noticed my face, especially around my nose and mouth also becoming a purplish gray.  They both told me I needed to go to the ER, and I told them I couldn't.  At that point, I knew I could not walk as far as the front door, let alone get into a vehicle and ride across town in that condition.  They then said they were going to have to call 911, and I said OK.  I had no idea what was wrong with me, but I knew that I needed help.  Immediate help.  

The next few hours are a blur for me.  I know when the EMTs arrived I was in very critical condition.  My blood pressure and oxygen were dangerously low.  My temperature and pulse were dangerously high.  I know they worked on me in the ambulance for 10 minutes before getting into place for the ride to the hospital.  I know I was given a breathing treatment.  I know I was put on 5 Liters of oxygen.  I learned that when they took my temperature at the hospital it was 105.3 degrees Fahrenheit.  I know my lactic acid was elevated.  I know my kidneys were in acute distress.  I was diagnosed with Septic Shock.   

When it was safe to transport me, once my vitals were in a safer range, I was taken to Lincoln where I spent the next two and a half days receiving IV antibiotics, Heparin shots in my stomach, and had labs run multiple times a day.  I was prescribed oral antibiotics to continue at home.  My bloodwork was inconclusive as to what caused my body to go into Septic Shock, so the doctors' theory is that I contracted a virus of some sort, unknown at this time, that caused the entire series of events to quickly unfold.

The unknown is scary.  The fact that I am now more susceptible to getting Sepsis is scary.  Having chunks of time I cannot remember and learning that. things I thought I did remember did not happen the way I picture them is scary.  But the scariest part of all of this are the after-effects that I had not expected to happen.  I had no idea...

Since being discharged from the hospital and being back at home, something is different with me.  Yes, there is the fact that I'm still not feeling well, haven't gotten back to my baseline yet.  But it's more than that.  Emotionally, that's where my struggle is, and I don't really know how to explain it...I am withdrawn, feel very hyper-sensitive and over-stimulated.  I startle more easily.  Some days I want to sleep 12 hours and some days I don't want to sleep at all.  I can feel myself getting annoyed quickly, agitated, less tolerant of others.  I feel very emotional, cry at the drop of a hat...I feel vulnerable, exposed, and very alone and unable to be understood by others because I don't know how to really put into words quite what these feelings are.   

I've been dealing with Long Covid, the loss of my career and life as I know it for 2 years now.  And it's so, so hard...but this is different.  This was fast and unexpected and unavoidable, and it almost took my life in a matter of minutes...and I don't know if these feelings I'm experiencing are common or "normal" for people who have come close to dying or if it's just me...but it's been a rough 3 weeks, to say the least...

New Perspectives, Christmas Eve, and Ugly Crying

I belong to a couple of Long Covid groups on Facebook; one is a group called Survivor Corp, which is a great public group to join for information and support if you or someone you know is suffering from the after-effects of Covid.  A woman whose husband has been dealing with Long Covid for almost 3 years recently posted something that really resonated with me.  She said that her husband had attended appointment after appointment with every type of specialist imaginable, and there just weren't any answers or resolutions for his symptoms.  (I know this scenario all too well myself.) She said when they went to see a cardiologist, they were given the best advice of all.  He told them that if her husband had not improved significantly after 4 months with Long Covid, the chance of recovery wasn't very likely to happen.  BUT, he told them that in 2 years her husband would be feeling much better.  He told them it wouldn't be because the symptoms had noticeably improved, but because they would have had time to grieve the loss of the life they'd had, time to grieve the changes and the illness, and would have learned their "new normal" though she said she hated that term.  (As do I at this point.)  She said it really was true; life was better now, after 2 years, than it had been because they'd learned how to accommodate for his limitations.  She said their children had learned that "Dad" couldn't do certain things with them (playing in the yard, going on amusement park rides, etc.).  She said her husband's friends no longer looked at him sympathetically when they saw him with his cane or riding his mobility scooter; that they'd adjusted to the changes and now talk and joke with him the way they had done before he had Long Covid.  That new perspective is something I need to work on for myself...

I have had Long Covid for 2 years now, and I haven't gotten past that grieving stage yet.  There are still days that are so hard I have fleeting thoughts that maybe it would have been better to have not survived Covid than to have had a relatively mild case, but then dealt with all of this for the past 2 years.  I would estimate that 3-4 days out of every 7 days of the week I have tears running down my cheeks while my husband helps me with my personal care and getting dressed because I'm so sad and angry and humiliated that I need someone to help me get dressed every day, someone to assist me with regular, routine tasks, with activities of daily living and even some executive functioning skills.  

My therapist and my disability lawyer have both basically given me the same advice: You can only control your own actions; don't worry about the things you can't control.  Well, I really took that to heart this year for Christmas.  I began my shopping back in early September.  I carefully chose everyone's gifts based on what I knew about them and their personal tastes.  I purchased multiple gift bags and gift boxes to make wrapping easier because I knew it would be exhausting.  I demanded that my husband get our living room remodel finished before Christmas Eve, which I was hosting.  I went all out.  I bought new matching paper plates, napkins, soup bowls, plastic cups, foam coffee cups, sparkly plastic spoons, the works.  I even bought a Christmas dress and "Merry Christmas" leggings.  I went all out in ways I never had before, and I have been hosting a "Soups and Snacks" Christmas gathering for the past 17 years!  I was controlling the things I could, and I wanted everything to be PERFECT.  And, honestly, it was. 

And then I paid for it.

On Christmas Day my head was pounding and I had dizzy spells throughout the day. I was completely exhausted.  The week between Christmas and New Year is a blur.  I honestly don't even remember those 7 days, and I didn't leave the house for 13 days following Christmas.  I was exhausted; mentally, emotionally, cognitively, physically, I was completely drained.  

This past week involved some ugly crying too...Thinking about school starting back up prompted me to think about what I would have done in class on that first day after break.  I started thinking about how I would give them Bell Work, with directions projected on the whiteboard.  

"Write one paragraph sharing your favorite part of Christmas break.  

Write one paragraph sharing your least favorite part of Christmas break.  

Write one paragraph sharing anything you'd like me to know, any topic you choose.  You do not have to share aloud in class, and no one will read them except me." 

I would then have used the rest of the class period to let students who DID want to talk and share things do so, using it as a speaking, listening, and asking appropriate questions lesson (which is a 6th-grade standard).  As I talked about it with my husband and daughter my longing to be teaching came back with a vengeance.  It's a physical ache in my chest, that longing to be in my classroom, to be with my kids again, to feel their energy and excitement.  I miss laughing every single day because of things my kids said or did.  I miss that feeling that I can't even describe in words when their faces light up because something "clicked" and they are learning and understanding and are developing the passion for reading and writing that I have.  There is nothing else in the world that feels the way it felt to teach and to see my kids LEARNING. 

And that's when the ugly crying happens...when I allow myself to feel the grief of no longer teaching...

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...

Poetry of Covid

This is my story

So many others relate

Yet some have no clue

So much escapes me

A black curtain in my brain

A wordsmith no more

Cruel neuropathy

Tingles throughout my body

A slave to its pain

Lost identity

Nothing is as it once was

What is my purpose

Darkness fills my days

Shadows where there was once sun

My light has gone out

Such anxiety

Who, what, where, when, why, and how

Constant in my head

Loneliness fills me

A shell of who I once was

When does this Hell end

Endless confusion 

Fog where once was clarity

Lost within my head

Swelling, heavy, pain

Angry red inflammation

Will it ever end

Headaches and neck aches

Joints, muscles, tendons, and nerves

Relentless attack

Where do I fit in

Who I once was is now gone

Emptiness engulfs

Exiting this world

Scary yet maybe relief

A burden no more

Lonely, lost

Once so happy

Nothing as it was before

Gone is the life I loved

Clarity is hard to find

Over and over my mind races

Visualizing the future is challenging

Images of the past flood my head

Dust in the wind, as the song goes...

Illness

painful, endless

fights, takes, strangles, stabs, stings

Attacking without compassion

Covid

It attacked me once, then came back for more

I never imagined such symptoms galore

Healthy

Happy, Active,

Teaching, Playing, Laughing

Fulfilled, Content, Sadness, Despair

Fighting, Struggling, Pleading

Cruel, Ruthless

Disease

There once was a girl who loved to teach

But then it became out of reach

She stomped on the floor

Because she could teach no more

And now she says life is a "beach"

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

A Birthday, A Death, A Covid Test, and A Party

Every year on my birthday, I think, "This is going to be MY year."...This year, that is the exact opposite of what I was thinking.  This year on my birthday my thoughts were more along the lines of, "Am I going to survive this year?"

It's a struggle writing this blog.  My left hand keeps spasming, so my fingers hit multiple letters at rapid-fire speed and I have to go back, delete, and attempt to retype.  That along with the struggles I already have with word-finding and needing to google similar words in order to figure out what I'm trying to say makes writing blogs a several-hour process.  My symptoms are exacerbated because I currently have Covid.  Again.  Yep, the nightmare that began October 10, 2021, is once again making its presence known.  

My birthday was Saturday.  I turned 49.  The last year of my 40's.  I didn't feel well.  We stayed home, laid low, did nothing to celebrate my day.  It was honestly a pretty depressing day.  As far as birthdays go, it was in the top 4 worst birthdays I've had (the other 3 being my 16th, 22nd, and 24th).   

To finish off the day, I received a message through social media from my ex-husband's ex-wife (who I didn't even know existed) informing me that my ex-husband had passed away.  I had no idea how that news might affect me.  I'm honestly still processing it.  On one hand, I married him, spent 3 years with him, and loved him.  He was a father figure to my son from the tiny age of 3 months through 3 years old.  He came into my life when I had hit an emotional rock bottom, and we had some really great times together.  And he was so good to my son, loved him like his own.  But on the other hand, he was abusive, both emotionally and physically.  He gave me my first black eye 2 days after our wedding.  He cracked my eye socket on my birthday.  He bruised a nerve in my back, threw a glass at me, pulled a knife on me, and refused to allow me to have contact with any of my friends, even most of my family.  He literally pulled the phone cord out of the wall when I attempted to call a friend while he was home.  It was often a scary and very isolating time in my life.  However, thinking that he just no longer exists somewhere in this world...that is a feeling I'm still trying to process.  

The next morning, I woke up feeling very stuffed up, congested, and had a "heaviness" in my head.  I took a Covid test, and it was instantly positive.  My husband and daughter also took tests, and theirs were positive as well.  All of us getting Covid was bad enough, me getting it again after still suffering from so many Long Covid complications 22 months after my first bout with Covid is pretty concerning.  I'm struggling.  I told my husband I feel like my brain is being attacked from the inside.  I don't know how else to describe it.  

My biggest disappointment of the weekend was not being able to attend a family gathering I had been looking forward to for weeks and weeks.  My aunt and uncle were celebrating their 50th anniversary, and I was sooo looking forward to seeing all my aunts, uncles, cousins, etc. whom I don't see on a regular basis.  I was absolutely devastated that I was no longer able to go because of our positive Covid tests. A lot of tears were shed as I watched the clock tick away, knowing what I was missing.  My cousin did Facetime me, which allowed me to see everyone, to watch my aunt and uncle open their gift from me, and to talk to people I hadn't seen in quite some time.  That did make me feel a little better about things, but it still, obviously, wasn't the same...

I've said it before, and I'm sure I'll say it again...Covid has RUINED my life...

I began taking a selfie on my birthday each year starting at age 46.  You can see that the two years before having Covid and the 2 years since having Covid are quite different...                             

                 

Endings, Triggers, Infections, Friendships, and Gratitude

The last couple of weeks have been rough.  Especially rough.  I knew school starting back up would be hard.  I didn't realize how hard though.  Last year I was on medical leave, so school starting was just the "official medical leave" start date.  I was still a school employee, it was still my job, my classroom, my life.  It was just on hold for a bit.  This year, everything is different.  I'm not a school employee anymore.  It's not still my job. It's not still my classroom.  That's no longer my life.  The impact of this reality has been more difficult than I ever realized or imagined. 

The things that have triggered me the most are things I had not even thought about being such severe triggers.  All the "First Day of School" pictures on social media felt like my heart was being ripped out of my chest.  Each one was another pull on my heartstrings because I should have been at school to see all those shining faces, nervous smiles, and sparkling white new shoes.  But I wasn't; I was at home trying not to think about what the date signified.  

Then, there was the unfortunate timing of my husband driving past the school, the school where I had taught for the past 14 years, on our way home from my doctor's appointment last week.  The students I'd had in my last year of teaching were outside at noon rec.  MY kids were outside at noon rec.  Even writing about it has my stomach in knots and my chest feeling tight because leaving that classroom behind still brings me physical pain each and every day.  

But this week, it was the silliest thing yet that really twisted the knife into my gut.  I began to see people sharing a promotion for a "Free Drink at Scooters" with the presentation of a school ID.  It hurt.  Plain and simple.  And yes, I know it's silly.  But that didn't change how much it hurt.  Then, yesterday, THE DAY, seeing all of the teacher friends I have or follow on social media sharing pics of their free drinks brought me to actual tears.  I had to just close my phone and not even look, not check my notifications, just remove the trigger completely.  It wasn't about the drink, it wasn't about getting something for free, and it's not like I couldn't and didn't get a yummy coffee drink today; it's that it was one more thing I'm no longer a part of because of Long Covid.  

It's that the identity I have had for the past 22 years is gone, and I don't know who I even am anymore...

A symptom I've been battling since 3-4 days before my actual positive Covid test, which we now realize was my very first symptom of Covid, is severe, pitting edema which has now developed into Lymphedema.  It has been uncontrollable despite lymphedema therapy, diuretics, compression, and all the things used to treat lymphedema.  A big part of lymphedema care is keeping the skin well-moistured because it gets stretched so tightly from the swelling.  If the skin breaks, lymphatic fluid weeps out, and this provides a beautifully fertile, absolutely ideal, breeding ground for infection.  

Unfortunately, despite my best efforts, I developed a rash that turned into blisters that turned into open wounds, and after not feeling well for a couple of days, and then having visible signs of infection along with significant pain, I went to the ER, and sure enough, I had an infection in my leg.  Treatment and healing are a long, uncomfortable process, and getting rid of the infection along with preventing it from returning while the wounds on my leg heal are the biggest and most challenging health priorities right now.  

It seems that's what my life has become; one challenge after another...but...

I recently read a quote that said:  Friends are like rainbows; they're always there to cheer you up after a storm.  

I have to say, that is absolutely true.

At the worst of times you really do learn who your truest friends are, and let me tell you, I was BLESSED WITH THE BEST.   From the friend who commented, "Once a teacher, always a teacher," on my post about Scooters to the ones who gifted us with an amazing surprise when we least expected it to those who go out of their way to ask my daughter how I'm doing when they see her at her job to those who started a GoFundMe for me when I spent 11 months battling with my Long-term Disability Insurance, to the ones who bring me coffee and stay for a visit, randomly text me just to check in, and show me dozens of little ways that I'm thought of and loved, there just aren't enough words or blog posts or poems or songs or flowers or hearts or hugs or thanks to show how much it means.  

To all of you, and you know who you are, I truly do know how lucky I am to have you in my life, and I hope every single one of you knows how humbled I am, how full of gratitude, and how truly thankful I am to be loved and cared for by you.  

This One is Real and Raw and Not for the Faint of Heart

I hesitated about sharing this blog post because it's painfully personal, humiliating, and vulnerable...But, the purpose of this blog is to share my life, to reflect, to relate to others who may be going through similar situations, to be my true self, and to show that through my writing.  So here it is...

It's Monday morning as I reflect back over the weekend.  It was a bad day Saturday, a REALLY bad day Saturday.

My husband's extended family had a family reunion at a nearby recreation area, and my daughter really wanted to go, to meet family she hadn't met, to see some of her aunts and uncles.  My stepson, his wife, who is a very close friend to me, and their 4 kids were also going.  It sounded like such a nice time, just spending the day together, seeing the kids and catching up; however, we all knew I couldn't go.  

First off would be the 20 minute car ride, which meant my edema would kick into overdrive.  There was no way I'd be able to walk any distance to the picnic area, so we'd need my wheelchair.  But, having never been there other than driving by, we weren't sure what the situation was as far as surfaces for a wheel chair to roll easily across to get around the parking lot and picnic area.  Then there was the restroom situation.  Having lymphedema means lots and lots of fluid throughout my body, which means daily diuretics, which then means many, many trips to the bathroom, which are urgent and often without warning.  The website stated "primitive restrooms" which sounded a bit concerning, and where these were located and how accessible they would be, we didn't know.  What we did know was that I am unable to walk more than 50 feet without being winded and needing to take a seated break before my legs give out.  

So, with lots of tears Saturday morning, as I grieved yet another thing I was unable to do with my family because of Long Covid, I texted with my daughter-in-law as we discussed what we should plan on our families taking along as far as potluck items, folding chairs, etc.  The tears continued as I helped my husband and daughter get things organized to take with them, and wished them safe travels, to send my best to the family, and to have a great time.

Once they left, I decided to tackle the job of tidying up and organizing my kitchen because this is something important to me, and something I knew would bring me some peace and a sense of accomplishment.  So, using the kitchen stool we purchased to assist me with being able to sit at a workable height, I loaded and started the dishwasher, put away some random grocery items still on the counter, cleaned out the refrigerator and organized it more neatly, and restocked the Kcups in our coffee area.  

While doing all this, I also decided to make me a small pot of alfredo pasta using packaged, instant noodles, a simple white sauce with garlic and cheese, and canned chicken breast.  It would be quick, easy, and could be simmering away in a small saucepan while I worked in the kitchen.  It had been determined over a year ago that I should not use the stove without supervision, but I didn't feel that I had really been needing direct supervision when cooking over the last few weeks.  My husband was always there, nearby, often helping me, being my "sous chef" as I cooked.  However, before my little saucepan of pasta was finally finished, and I could contentedly have a seat to enjoy my lunch along with a sense of accomplishment for all I had gotten done, I ended up with a burn on my arm from laying it on top of the hot saucepan lid I'd forgotten about.  I'd just set it down on the edge of the sink not 10 seconds earlier, but somehow forgot.  Burning my arm caused me to jerk abruptly, flinging pasta and sauce across the stove, onto the backsplash behind the sink, and down the front of myself.  So, I had one more mess to clean up, along with an arm to run under cold water, before ever sitting down to put my feet up, and eat.  This was my reminder as to why I wasn't supposed to use the stove when I was home alone...By the time I'd finished all that, my husband and daughter were pulling up, back home and ready to tell me all about the reunion.  

The evening was relatively calm as we watched a movie, had some leftovers for dinner, and relaxed after a long day.  Then it was time to get ready for bed.

I have been noticing some issues with swallowing lately, having this feeling as though my throat is constricted, so I began doing a little research on possible causes right before heading to the bathroom to do my nightly routine.  Multi-tasking is something I completely lost the ability to do when Long Covid set in, and has been a constant challenge for me over the past 20 months.  My mind was on what I'd been reading, and I was thinking about what the cause of my issues could be as I entered the bathroom and closed the door.  The next thing I realized was that I hadn't lifted the toilet seat before sitting down because my mind had been elsewhere, still going over possible explanations for my strange swallowing issue.  It was too late to correct my mistake.  (Remember my comment above about diuretics, urgency, little warning....?) 

The next 30 minutes consisted of me sobbing hysterically, a mess all around me, and my husband and daughter both taking turns trying to talk to me through the bathroom door, but me too distraught to form words they could even understand.  When I finally let my husband in, he immediately told me to just take a nice, long bath while he cleaned up and took care of things.  When he'd finished up, he headed to bed, leaving me to soak in the tub and regroup.

After an hour of soaking in a warm bubble bath, I had calmed down a bit from my humiliating mishap, and began to stand up when I had the most excruciating charley horse attack my upper left calf.  It was so painful I couldn't even reach for my cell phone to text my husband for help.  I was literally frozen in agony for a solid minute, trying as hard as I could to push my foot flat against the bathtub to relieve the pain, before I could even move.  When I could finally feel a little bit of release, I texted my husband, and he came in, massaged my calf enough for me to be able to move my leg without the muscle balling back up again.  This is just one more symptom of lots of diuretics, even with many, many potassium supplements taken throughout the day...

That charley horse showed back up, thankfully in less aggressive fashion, twice more before I was able to climb into bed and put a fork in one seriously awful day of Long Covid rearing it's ugly head at me.  But, I made it through it, and luckily, yesterday was a bit better than the day before...I can only hope maybe today will be even better yet...

Purgatory: An Analogy

My husband, my daughter, and I went out of town to have a nice lunch together for my daughter's birthday.  We were listening to music, and "Hotel California" came on.  My daughter and I began having a discussion about what it was actually in reference to or what The Eagles intended it to be about.  There are many theories, but one of them is that Hotel California is a sort of purgatory.  We then got on the topic of what purgatory is and means.  I said purgatory in itself can be an analogy to so many things really.  Then it hit me, and I said, "That is how I feel; Long Covid is purgatory for me."

The Merriam-Webster dictionary gives the following definition:                          pur-ga-to-ry /pər gə tȯr ē/ noun a place or state of temporary suffering or misery

The belief in terms of religious references to purgatory is that purgatory includes both suffering and healing. However, some believe a minute in purgatory is a year in our time; some believe it is only a short stay until the prayers of loved ones release you from that state of abyss.

When people ask me how I am feeling, I usually give an answer such as "hanging in there" or "one day at a time" But, what feels like the most accurate answer would be, "I feel like I'm stuck in purgatory, and I have no idea what I need to do in order to be released from it. I'm not healing, not getting better. But, I'm not dead either. I'm stuck in this abyss of nothingness." I realized at that moment, as we listened to the song, that Long Covid feels like Purgatory to me. I finally have the perfect analogy for what these past 22 months have felt like.

I have been struggling lately. A lot. After a 71-hour streak without sleeping, I am now working with my healthcare team to help my brain to understand that it needs sleep. A prescription sleep aid is the newest addition to the plethora of pills and supplements I take each day, on a 5-alarm reminder schedule. It just seems that there is one problem after another, one new, quirky, bothersome symptom every couple of months. Sometimes I laugh; sometimes I cry. Sometimes, I do both.

"Last thing I remember, I was running for the door.  I had to find the passage back to the place I was before.  'Relax,'  said the night man, 'We are programmed to receive.  You can check out any time you like, but you can never leave.'"                ~ The Eagles

Works Cited:

“America’s Most Trusted Dictionary.” Merriam-Webster, www.merriam-webster.com/. Accessed 9 Aug. 2023.

"Hotel California."  Hotel California, Asylum Records, 1976.

Color Me Happy

I haven't written a blog in 4 weeks.  When I go silent, it's a good indicator that I'm struggling in all aspects.  That has definitely been the case over the past few weeks.  My body is betraying me.  At least that's how it feels right now.  My edema is relentless.  My joints hurt.  My muscles hurt.  My neuropathy is a constant issue.  Breathing is a struggle when I do anything at all; it is only calm and steady when I am sitting and idle.  My brain is foggy.  My emotions are completely out of balance and uncontrollable.  Crying has become part of my daily routine.  I regularly have a night when I don't sleep.  Going 40 hours between periods of sleep is becoming more and more common for me.  At times I feel almost manic.  

Color Me Happy.  I first heard this expression in the movie Pretty Woman way back in 1990.  Julia Roberts walks into the elevator of the Beverly Wilshire Hotel and blurts out, "Well color me happy!  There's a sofa in here for two!" Since then, I have used the expression as the name of the After-School Club I oversaw.  Students were able to come to my classroom and color to their hearts' content.  They did this as a stress reliever, as a distraction from life, as avoidance from doing homework, and/or as a place to socialize with friends while coloring away in various books and printed pictures I provided.  My daughter also always enjoyed coloring, and, at 21 years old, she still does.  

Coloring is a pastime I have now started as well.  I had colored as a child, but as an adult, I didn't really care to color anymore other than the occasional picture I colored with one of my kids when they were growing up and asked me to color with them.  However, coloring has now become my obsession.  I have purchased about 20 coloring books over the last 3-4 months, and I find myself coloring for hours and hours on end without even realizing how much time has gone by.  I don't know if I'm coloring myself happy or coloring myself crazy.  I sometimes wonder if it's an unhealthy addiction at this point because I will sometimes color for 8-10 hours straight, only stopping to use the restroom or to have a quick bite to eat.  My hand will hurt, my fingers have developed blisters and calluses, yet still, I can't seem to stop coloring.  Because of my dexterity issues, I bought rubber grippers for every single one of my colored pencils (both my Crayola Twistables and my June Gold Mechanical Colored Pencils) to assist with my pencil hold.  My first pictures were in large print coloring books I purchased online that were intended for "senior colorers" and "elderly and disabled colorers".  But now, my obsessions have been landscapes, interiors and exteriors of houses, and country scenes.  I have begun layering colors, using a black pen to complete lines or add things to the pictures, and adding my own "touch" to my pictures.  (Examples at the end of the blog)

But then I think, "Wow...I was a 'Master Teacher'.  I have a Bachelor of Science degree in Elementary Education with endorsements in Early Childhood birth to 3rd grade and Special Education, PreK to 12th grade along with a Master of Science degree in Curriculum and Instruction.  I had been teaching in my building longer than all but 5 other teachers.  I still had so much I wanted to do, so much I wanted to try, so much more I wanted to accomplish in my career.  I LOVED my job, my life, my place in this world.  Two years ago I truly felt like I had my whole world figured out.  I was the happiest I'd been in years.  I was feeling great physically, mentally, and emotionally.  I had so much energy and enthusiasm.  Life was so good.  But then, just like that, everything changed.  

Now, instead of being a Master Teacher, I'm texting the pictures I've colored to my daughter and to my best friend, proud of my COLORING SKILLS when just 2 short years ago I was teaching Language Arts to 100+ students every day.  This is what my life has come to, and I am just not sure how long I can survive it anymore...

But for now, I will just continue to color...It's an escape from reality, and right now, an escape from what is real seems to be what I need.

Credit is given to: Marshall, Garry. Pretty Woman. Buena Vista Pictures, 1990.

 

Sometimes I forget...

For the past 15+ years, since having a classroom of my own, my mind is always on new ideas for my class, for lessons, for things to do with my students, for things to share with them.  This past year hasn't changed that.  The thoughts in my head were always just, "When I get back to work, I will....." But now, I'm not going to be going back to my classroom.  I can't use the ideas, lessons, and activities I have been dreaming up in my head over the last year.  That is a hard pill to swallow.  

My cousin was texting with me yesterday and told me about a graduate program at a nearby college.  I was immediately intrigued.  My mind instantly jumped to getting a second Master's Degree, this time specifically in English, to both advance my pay and maybe even my job title.  That thought was quickly squashed as I remembered I'm not teaching anymore, that my degree could be advanced as much as I chose, but it would not be used towards a benefit to my pay or my job title because I no longer had either of those.    

I did have the opportunity to speak in an online meeting to a group of Occupational Therapists last week about my experiences with Long Covid, and it felt so good.  I felt like I was actually teaching again. I was sharing knowledge, adding my own experiences, answering questions, and feeling completely in my element.  Of course, I had to write up a script beforehand of what I was going to say to ensure I was able to stay on track, explain my experience in chronological order, and not lose my train of thought because those are the challenges I face when speaking to people, even in just small groups or in one on one situations.  Obviously, when teaching live, in-person, and in actual classroom settings, a script does not and cannot work.  Interruptions occur, questions get asked, distractions are everywhere, and every minute of every class period of every single day is unpredictable.  

So, I will take whatever opportunities I have to share and to teach and to continue to seek out ways to be an educator in any form.  But sometimes, just for a moment, I forget my limitations, and my brain wanders toward all of the things I still want to do...

It's not all in my head...but some of it actually is...

One of the most frustrating things medical professionals (or friends, family colleagues, etc.) can tell someone when they complain of an ailment is that it is "all in your head".  This response causes feelings of invalidation and even distrust of those who we expect to listen and to support us when we are struggling.  One of my favorite quotes from the sitcom Boy Meets World is from Season 7, Episode 14, when Cory Matthews thinks he is terminally ill and goes to the doctor.  When he comes home, he gives his wife, Topanga, the news that his doctor diagnosed him with hypochondria and gave him placebos to take to treat his illness. When Topanga tells him that hypochondria is what it's called when crazy people think they're sick when it's really all in their heads, and his best friend, Shawn, tells him placebos are pills to make crazy people think they are being treated for illnesses they don't really have, he gives the impassioned response that he has to be on them for the rest of his life. 

But, sometimes it really IS all in our heads.  Literally.  

The impact trauma has on a person physically, mentally, and emotionally is difficult to describe if you haven't experienced it firsthand.  You can think you understand, offer sympathy, and even make jokes about being forgetful too, but the trauma response in those who have experienced either mental or physical trauma is much different than simply forgetting if you turned off a light or forgetting to pick up milk on your way home from work.  It impacts every single aspect of your life.  

Research published by both the University of Denver and the National Library of Medicine shows very similar patterns among those suffering from Post-Traumatic Stress Disorder (PTSD), people with Traumatic Brain Injury (TBI), and Long Covid patients.  The impacts of PTSD on Long Covid patients were very similar in both those who were hospitalized with more severe symptoms and those who had more mild symptoms and were never hospitalized during the duration of their Covid infection.  The trauma responses aligning with PTSD are because of the impact Covid has on their lives following the illness.  TBI symptoms are due to inflammation caused by the Covid virus, similar to the inflammation caused by a concussion injury.  This inflammation found in Long Covid sufferers typically affects the brain stem, just as is the typical area of inflammation in concussion patients.  

The American Psychiatric Association describes PTSD as an anxiety disorder that must include five major criteria.  In terms of Long Covid, the five criteria are met based on the experiences of Covid-19 and its lasting impacts.  The five criteria in my own personal situation are:  1.) Exposure to an event that threatens safety, triggering a response of fear or helplessness.  In this case, that event is being infected by Covid-19.  2.) Psychological distress when reminded of my trauma; 3.) At least three avoidance symptoms; My personal avoidance symptoms are active avoidance of reminders, withdrawal from others, and emotional numbing.  4.) Marked arousal; Mine include insomnia, difficulty with concentration, and a heightened startle response. 5.) These symptoms must cause considerable functional impairment at least 1 month after the initial trauma event. I first began to notice concerning cognitive symptoms in mid-November, 2021, which was 4-5 weeks after my positive Covid test.  

Treatments for the mental and emotional areas of Long Covid look very similar to the cognitive behavioral therapy used for TBI and PTSD patients.  This therapy can be difficult and extensive.  Working through the traumas that brought me to the place I am at today means digging deep and first facing those triggers and traumas I had kept tucked away in deep, dark places in my brain.  It means knowing that there is some actual physical damage caused to my brain because of the initial infection, and learning how to accommodate for those things that don't work the way they used to work.  It means finding a way to accept that this is my new reality and trying to move forward, even when the future is scary and unknown after thinking I had the whole rest of my life all figured out.  It means living one day at a time and remembering that every teeny, tiny baby step forward is still forward motion and needs to be celebrated.

References

Anschuetz, Nika. “DU Study Finds Similarities in Diagnosis and Treatment for Concussions and Long Covid.” University of Denver, 20 Feb. 2023, www.du.edu/news/du-study-finds-similarities-diagnosis-and-treatment-concussions-and-long-covid#:~:text=There’s%20a%20deficit%20between%20acute,they%20could%20involve%20similar%20treatments.

Bryant, Richard. “Post-traumatic stress disorder vs traumatic brain injury.” Dialogues in clinical neuroscience vol. 13,3 (2011): 251-62. doi:10.31887/DCNS.2011.13.2/rbryant 

Houben-Wilke, Sarah et al. “The Impact of Long COVID-19 on Mental Health: Observational 6-Month Follow-Up Study.” JMIR mental health vol. 9,2 e33704. 24 Feb. 2022, doi:10.2196/33704