For the Health of It

I manage nearly all of my care independently, with the exception of being within a week or so of an operation.  For that, I am grateful.  Many folks with my condition are largely reliant on caregivers to manage their healthcare.  Being such an independent person, I don't regularly discuss what it takes to navigate my health needs.  I thought this blog post would provide me with a format to share that with you.

To tell you my story, I have to give you a little background knowledge.  I have Congestive Heart Failure (CHF).  This is my 5th year having this diagnosis.  To assist my failing heart, I have what is called a Left Ventricular Assistance Device (LVAD).  I was recently fortunate to have an Automatic Implantable Cardioverter-Defibrillator (AICD) implanted to address my episodic runs of Ventricular Fibrillation (VFib), a dangerous cardiac arrhythmia.

One of the most crucial aspects of taking care of myself is maintaining an extensive prescription regimen.  I take around 15 pills each day to satisfy what my body needs to function as well as medically possible.  To avoid listing everything on my medication list, I will simplify by saying that I take beta blockers, a couple of anti-arrhythmic medications, blood thinners, vitamins that support cardiac function, a diuretic, an anti-anxiety medication, a supressive antibiotic, and a couple of different allergy medications.  As luck would have it, my pharmacist did a lot of his studies while interning with a heart failure center, so he is very familiar with my symptoms, medications, and the like.  I have a great sense of peace knowing that the guy responsible for dispensing my meds is not in the dark when it comes to my condition!  I take most of these medications twice per day.  Each time, it takes around 10 minutes to lay out my pills and get them swallowed.  When I can help it, I try to have something to eat before taking my meds because otherwise, it kills my stomach.  

I have had my LVAD since April 30, 2018.  Lord, what a trying summer that was.  I may write another post that goes into that a little more, but for now, know that most of it sucked.  The most critical component of being an LVAD patient is staying on top of your driveline dressing routine.  The driveline is the line of wires that connects the batteries and controller to the pump inside your body.  The driveline enters through a spot on your stomach and travels through your trunk to the pump that rests in your heart and chest cavity.  This "hole" (for a lack of a better term) stays open, so for the duration of your LVAD's stay in your body, you have an open portal between your insides and the world.  

Some people never have issues with their driveline site.  However, I am not "some people".  In January of 2019, I developed an MRSA infection in my driveline and was in the beginning stages of sepsis.  I was in and out of the hospital for most of the winter and spring trying to get on top of the stubborn infection.  This required IV antibiotics during my hospital stays and additional IV antibiotics administered through a PICC line in my arm a couple of different times.  I was prescribed oral antibiotics as well.  Eventually, the infection was considered "controlled", but it will always lay dormant in my body waiting for the perfect storm of circumstances to run rampant again.

To curb this, my team performed a surgery called an Irrigation and Debridement procedure (I&D surgery).  This is where the affected and necrotic tissue caused by the infection is removed from the body and the entire driveline is cleaned out to lessen the bacteria's opportunities to get the upper hand.  The day after this procedure was done, I was shocked to find that my surgeon had to remove a chunk of my stomach roughly the size of a squatty, fat dill pickle.  The wound was easily 1.5 inches deep.  My wound care consists of twice daily dressing changes.  I am sent a giant box of supplies monthly to provide what I need to clean and pack the wound.  This process usually takes around 15 minutes.

Showering and other day-to-day tasks with the LVAD are a little different.  To get a shower, my LVAD has to be placed in a waterproof shower bag that I wear cross-body.  I have to use cling wrap and silk tape to cover my wound site to mitigate dirty water soaking my dressing.  Immediately after showering, I have to change my driveline dressing.  At the moment, I am also covering my left shoulder with the same cling wrap/silk tape get up because that is where they recently placed my AICD, so it is still considered a vulnerable spot that has to stay dressed and dry.  Showering usually takes me around an hour from start to finish.

The LVAD itself uses two batteries.  Together, the batteries last about 10 hours.  Before I go anywhere outside of the house, I have to know where my battery life is and take extra batteries and a spare controller with me.  Overnight trips require me packing up my batteries and charging station.  I use a large backpack for this.  I also have an AC cord to use at night so I don't potentially "sleep through" low battery alarms.

The other integral aspect of taking care of myself is maintaining my appointments.  I have an LVAD team that I see pretty much monthly.  I also have to see my surgeon's office routinely and now, with the AICD, I see an electrophysiologist.  Additionally, I have a home health nurse that sees me weekly to draw labs and ensure that things are going okay.  I recently learned that my insurance company wants to send another home health-type nurse to "support" me (probably more or less to see if I'm really needing the stuff they're being billed for-LOL).  Lastly, I also see a sleep disorder doctor as it was discovered that I have a mild sleep apnea, so I will soon be adding "CPAP" to my list of medical equipment and appointments.

I wish I could come up with a more graceful closing to this post, but frankly, I've had enough of myself after delineating all of that.  In the posts to come, I hope to discuss more about my insights into other components of my heart journey and overall human experience.  I'm oscar-unicorn-tango.

Sincerely,
Samantha

     

Finley: "Pale Warrior", Part 2

In my last post, I barely crop-dusted you with information about sensory processing.  This topic is pivotal to all people with neuro-divergent brains because, often, they experience some degree of disordered sensory processing.  It affects all of us, to at least a small degree, even if our sensory processing is not considered "disordered". 

It is extremely important for me to mention that sensory processing is directly linked to the body's nervous system, so someone with a sensory processing disorder can feel physical pain when presented with stimuli that trigger the disorder.  In folks that experience life on the Autism spectrum, the common reaction to hyper-stimulation is what we often refer to as "meltdown".  A legitimate meltdown is a much different behavioral expression than that of a "tantrum".  More on this in Part 3.  :)   

There are three stages of sensory processing: 

1. Input/Stimulus 
2. Integration/Processing
3. Motor Output 

The input/stimulus stage can be broken down into 8 sub-categories:

1. Visual (sight)
2. Auditory (sound)
3. Olfactory (smell)
4. Gustatory (taste)
5. Tactile (touch)
6. Vestibular (balance and orientation within the environment)
7. Proprioception (muscle/joint movements)
8. Interoception (the overall feeling of wellness in the body-hunger, thirst, fatigue)

Within the integration or processing stage is where things get wonky for folks that live with disordered sensory processing.  People on the Autism spectrum neurologically misinterpret sensory input.  Each person with sensory processing issues will present differently, so you cannot ever assume that one individual will react similarly to another. 

This is why it is so imperative for teachers and parents of students with Autism to build a relationship and utilize effective communication on a regular basis.  I can't tell you how many times as a teacher that X has triggered a huge meltdown for "George" and I've contacted the parent and heard, "Oh yeah, that's ALWAYS a big trigger for him!"  Well, gee...thanks, "Linda".  Wish I'd have known that BEFORE we had to initiate a room clear!

#sorrynotsorry

During the motor output stage is where you see the person's behavioral expression of how their brain has processed the stimulus.  Many people with Autism can become hypo-reactive (meaning they kind of mentally "zone out" or physically go "limp noodle") or hyper-reactive (meaning they experience meltdown or other expressions of opposition/avoidance).

One of Finley's occupational therapists with First Steps explained to me that everyone has a sensory threshold.  Kids with Autism often have either a high need for sensory input ("sensory seekers") or a low need for sensory input ("sensory avoidant").

Finley is a sensory seeker down to the marrow of her bones.  She craves stimulation.  Her favored source of stimulation is vestibular.  This means she finds joy and comfort in running, jumping, climbing, swimming, swinging, spinning, and anything else that makes her momma's heart jump to her throat!  She can often be found climbing the counters in the kitchen, running back and forth between two rooms, or jumping on furniture.  If she has received enough stimulation throughout the day, these behaviors markedly decrease.  However, once she decides she's bored, she becomes a ping-pong ball.

Many kids with ADHD can be seen as "sensory seekers" or "sensory avoidant".  This is why sometimes kids with Autism will be misdiagnosed or diagnosed with both disorders.  Because, neurologically speaking, they are very, very similar.  Especially during the younger years.  The main difference to look for there is in communication and language.  More on that in a future post.  :) 

 

Finley: "Pale Warrior", Part 1

I have been way over due for a blog post!  There has been a lot going on in the last couple of months and Finley is home for the summer, so finding respite to write is rare.  Several folks mentioned wanting to learn more about our journey with raising a child with Autism.  There will likely be a series of 3 or so posts to properly delve into all I want to say on the topic.

As many of you know, our daughter, Finley Rose, is diagnosed with Autism Spectrum Disorder (ASD).  According to the Centers for Disease Control and Prevention (CDC), in 2014, 1 in 59 children were diagnosed with Autism Spectrum Disorder (ASD).  This data comes from a study conducted by the Autism and Developmental Disabilities Monitoring (ADDM) Network.  The report goes on to explain that ASD is 4 times more likely to occur in boys than in girls.  According to their data, 1 in 151 girls are affected by ASD vs. 1 in 37 boys.

The reason I felt it was important to distinguish boys diagnosed vs. girls is because ASD truly looks much different in female children.  Many girls go undiagnosed or misdiagnosed because they do not display the "classic" characteristics of the disorder.  Many times when we think about Autism, we picture a child that is anti-social, avoids eye-contact, and has uncontrollable "stimming" behaviors (rocking, humming, hand flapping, etc.).  While some girls do display these behaviors, many do not subscribe to them quite as obviously or clearly as boys typically do.

I will use Finley as an example.  Before attending pre-school, Finley was very contented to completely ignore the presence of other children around her.  She would play independently with a random object or interact selectively with an adult.  Today, she clearly exhibits a desire to want to be a part of a social group and is able to "jump in" with a group of kids in play.  However, when you watch closely, you notice that she still doesn't quite seem to understand the little made-up games kids like to play, but she loves to run, jump, and squeal in tandem.  Because of this, other children struggle to find common ground with Finley and as time goes on, she becomes left out of the social group.  Sometimes, she gets SO excited and overstimulated, she will swat at the kids around her or grab at their clothing with little to no warning.  Understandably, this is off-putting to kids that are unfamiliar with Finley.

Finley does not avoid eye-contact.  However, she rarely maintains that eye-contact without verbal prompting.  She will now respond to her name and various directives when given explicitly with attention to task analysis for things that are new for her.  Working with kiddos for 10+ years in a school setting, I can tell you that neither of those things are too uncommon in neurotypical kids her age.

Finley does not display the typical stimming behaviors, but she certainly does stim.  You will see her stimming the most when she is bored in the environment she is in.  For example, when she's been at home all day without planned activities, she will often resort to running in circles, jumping, climbing furniture, and squealing.  Many kids with ADHD as a stand-alone or co-morbid disorder display the same types of behaviors.  When Finley is OVER stimulated, she becomes destructive and emotional.  Again, not dissimilar to children with ADHD.  The key to curbing a lot of these behaviors with Finley is keeping her active.  Like, way more active than the average kid.  Finding a way to channel that energy is paramount because anyone that is a sensory seeker WILL find a means to meet those sensory needs.  More on that in Part 2.

This post might be a little weird and ramble-y, but life is a little weird and ramble-y, ours especially.  Raising a child with Autism is not for the weak-minded parent.  Ultimately, it takes a village and more patience than most people can muster on any given day.  I try daily and fail occasionally.  Some days, you just have to love harder!       




    

Sauced

"I think that if all kids aspire to reach a point where they could feed themselves and a few of their friends, this would be good for the world surely." -Anthony Bourdain

Cooking is an activity that I have come to enjoy in the last few years.  I am not a world renowned cook like Chef Bourdain, but we have a few things in common.  We both find catharsis in writing and cooking a great meal for others to enjoy.  When the mood strikes, nothing is more therapeutic than having a glass of wine, chopping the bajeezus out of an onion, and consulting Spirit about how many cloves of garlic are needed.    

My favorite recipe is my meat sauce or Sunday Sauce, as some Italians I know call it.  Each batch has its own unique character.  It has to be built carefully, layer by layer, much like crafting savory imagery in your writing.  Committing to quality ingredients is imperative.  Additionally, you will need time.  A good sauce is not something you can whip up in 30 minutes or less.  Pick a day that you have a few hours to devote to your craft so that you can really become acquainted with this new character you've created!  Above all, keep in mind that the day your recipe becomes rote, you've lost the point. 

The coolest thing about meat sauce is you can make a huge batch, serve your family that night, then freeze the rest for another day!  Don't put the sauce in the fridge until it has cooled to room temperature.  Otherwise, it develops a weird sour taste that poo-poos on all of your hard work.  Once my sauce has cooled, I pack portions in gallon-sized freezer bags and flatten them out before freezing.  This makes storage a little easier as well as thawing later.  I also recommend using organic tomato products.  In my experience, the organic tomato products are less acidic.  Additionally, I suggest cooking your onions down on a lower heat until they are translucent and floppy.  You want the flavor...not the indigestion!

4 tbsp extra virgin olive oil

2-28 oz cans of crushed tomatoes  

1-12 oz can of tomato sauce

2 tbsp tomato paste

1 medium vidalia or sweet onion, chopped

3 to 6 cloves minced garlic (remember:  consult Spirit)

3 tbsp Italian seasoning

one-half to 1 lb ground beef

8 oz fresh sliced mushrooms (or more, depending on how you feel about fungi)  

1 to 3 tbsp white sugar (Start with one and TASTE before adding more!)

1 half cup grated Parmesan cheese

1.  Pour about 4 tbsp of extra virgin olive oil into a large pot.  You want to choose one that has a good amount of surface area so that the sauce doesn't get too heavy on the bottom and burn.  I recommend a 10.5 qt stock pot OR a 12 in sautee pan that has a good amount of depth to it.

2.  Add your chopped onion.  Let the onions sautee for about 5 minutes by themselves.

3.  Add ground beef.  Don't let it cook too long...remember, it will be boiling with your sauce soon, so if you see a little pink, its a-okay.  

4.  When your onions are good and floppy, add the Italian seasoning and incorporate it well.

5.  Add minced garlic and mushrooms.  Don't let these sautee for too long, either.  You REALLY don't want either of these to burn!

6.  Slowly pour the canned tomato products into your pot/pan.  Stir well.

7.  Turn the burner down to low and cover.  Watch the sauce to be sure it develops small, simmering bubbles.  

8.  Stir every 10-15 minutes for at least one hour.

9.  Adding white sugar helps to cut the acidity of the sauce.  Start by adding 1 tbsp, give it a taste and see what you think before adding more.

10.  Add 1/2 cup of grated Parmesan cheese to the sauce and stir well.  Freshly grated is better, of course.  

11.  Watch your family make this face as they enjoy your creation:

Sincerely,

Samantha

Memento Mori

This poem is admittedly dark AF, but it was in my brain this morning.  Unless I intend to become creatively constipated, I've got to breathe life into it.  As a writer, I enjoy digging deep into even the smallest emotion.  In school, they called it "exploding the moment".  Well...BOOM, y'all!

Memento Mori

This town is a shrine to faded memories.

Street signs and parking lots harbor ghosts of the ones I used to know.

Familiar once as my favorite songs,
now foreign and ambiguous.

Driveways call to me,
with panged expressions,
and empty promises of peace,
but I can no longer number their cracks.

Time has extinguished the evidence,
and silenced the sole survivor.

Until the next lucid dream,
or photograph surfaces. 

Sincerely,
Samantha

#sorrynotsorry

"Every cloud has its sliver lining, but it is sometimes a little difficult to get it to the mint." -Don Marquis 

I began this week thinking that today's blog would be about a few different developmental psychologists and how their behavioral theories could be applied to loving someone with a chronic illness.  I may still publish that one some day soon, but today, my mind is in a different place.

Today, I want to talk to you about phrases like "everything happens for a reason".

At many junctures in life, we experience things that just plain suck.  There's no way to sugar-coat or minimize just how suck-tastick some things are.  We often lean on friends and family to hear us out in the hopes that their being outside the situation can bring some calm to the storm of circumstances and emotions that we're up against.

On behalf of myself and anyone else that has faced an insurmountable level of bullshit, do not default to "everything happens for a reason" as your initial response.  Responding with a phrase like this inadvertently minimizes the person's feelings and triggers misplaced pangs of guilt.  In my raw, emotional state, when I hear this, I think to myself "I have no right to question what's happening to me because its a God thing and I'm not allowed to be upset with God, so I guess my feelings are invalid and selfish."

Of course, that's not what you intended!  Nobody in their right mind intends to make a loved one feel this way!

If someone is comfortable enough with you to be vulnerable in your presence, you kind of have a responsibility to dig deeper within yourself than "everything happens for a reason".  Try to empathize, ask specific questions, help them see the "silver lining" when that person is ready.  Most importantly, listen and be the human they need in that moment.

Sincerely,
Samantha

Confessional

"A man's pride can be his downfall and he needs to learn to turn to others for support and guidance." -Bear Grylls

I was diagnosed with Congestive Heart Failure (CHF) on March 12, 2015.  Out of habit, I am inclined to delineate my entire CHF timeline.  Nevertheless, I will save that for another day.  In essence, I've been "sick" for a little over four years.  It would be irresponsible to gloss over the seriousness of my health issues.  However, it is my most profoundly heartfelt desire for everyone I share my story with to know that CHF is a part of my story, but it is not my identity.  As someone who has studied human behavior pretty extensively, I am no stranger to exhaustive introspect (thank you, anxiety brain), so I have no hesitation in coming to the conclusion that I am a proud person.  In most circumstances, that facet of my personality has served me well.  It drives me to perform well professionally and to maintain boundaries in my personal life.  Pride has also proven to be my Achilles heel. 

Upon my initial diagnosis, I was hospitalized for 6 days as my doctors pulled around 30 pounds of excess fluid off of my tired body and introduced various medications to help my heart get the rest it so desperately needed.  My instinct was to protect my privacy with ferocity.  My husband and family were aware of what was going on, but the idea of inviting friends and acquaintances into my woe was physically repulsive to me. 

Looking back, I now realize that was pride getting in the way of the love and support my soul would require to get to where I am now.    On day 3 or 4 of my hospitalization, my husband was wheeling me around the floor I was confined to and he said, "You really should let people know what's going on.  You may be surprised by how many people will rise to the occasion."  Those may not have been his exact words, but the sentiment is what matters here. 

My pride and ego were co-conspirators in building a 300 foot Kevlar wall between the outside world and the things that made me feel vulnerable.  I had not yet digested what this illness would mean to me, so there was a hot pit of fear, sadness, and anger gurgling in my gut.  Between the illness itself and my emotions, I was incapable of poising myself for the public.  My husband's careful coaxing encouraged me to create a Facebook post inviting friends and acquaintances to send up their prayers for myself and my family.  That was hard for me, to say the least.  But, he was right and I think, deep down, I knew I needed to reach out for support because this diagnoses was bigger than me at the time. 

As my health journey has endured, I have continued to battle my pride and my ego.  I frequently have to wade into the river of emotional discomfort to ask for and accept help.  What I've come to realize though is that I have served as a good friend to so many.  I've been a smiling face, a shoulder to cry on, an open ear, and someone who can make you laugh in the darkest of times.  Friends and acquaintances are eager to reciprocate (at least the ones worth keeping around).  In shutting them out, I was doing us all a disservice. 

So, I suppose the take-away from this post is:  Don't let the screwed up things in your brain snuff out the needs of your soul.  Unmitigated pride and ego are thieves and as much a hindrance to your livelihood as a chronic disease like CHF.  Go forth and don't be the jerk that doesn't allow good friends to be good friends.

Sincerely,
Samantha                   

Partly Cloudy with a Chance of Sarcasm

"You can't really be strong until you see a funny side to things." -Ken Kesey

This introduction (of sorts) is meant to serve as a bit of a PSA.  Please understand the following as you read my blog:

1. My sense of humor is best described as irreverent, sarcastic, morbid, and sometimes vulgar.  
2. I am an "old soul" and a deep thinker--existential and introspective.
3. Chronic illness is a part of my life; my blog topics will not always be uplifting in tone.
4. Mine is a family affected by Autism, so posts about our home life may seem backwards, but its how we make it work.

If you've known me for any length of time, you've realized that I use humor and wit to make any situation more comfortable, regardless of how grim it may be.  Making an entire team of doctors and nurses in an operating room giggle could probably be considered a hobby of mine!  The most recent example I can think of was when I was having a PICC line placed so that I could receive IV antibiotics at home to treat a driveline infection I was experiencing.  The young doctor began rinsing my right arm down with cold, bright orange Betadine.  I looked over and asked, "Have you ever felt compelled to write 'ass' or something on somebody's arm because I feel like I would have to fight that urge on a daily basis."  Needless to say, the room immediately became less tense and we all continued to cut up as the PICC line was placed and I was sent on my way.  I feel like anytime you can humanize yourself in a medical situation, the stronger your relationship with those professionals becomes.  If you can make em fall in love with you, you will be well cared for and probably never forgotten.