Diagnosis: PoTS

In my last post I talked about how I was diagnosed with Gastroparesis.  My POTS diagnosis was just as quick and (also) pure dumb luck.  

Postural Orthostatic Tachycardia Syndrome (POTS) is a very common form of Dysautonomia that is characterized by a heart rate increase of 30 bpm (40 bpm in children and adolescents) or more within the first ten minutes of standing.  When a person without POTS stands up, gravity pulls about 2 quarts of blood into the lower body (an adult has about 6 quarts).  The brain senses a sudden loss of blood and triggers this response: (1) the heart beats faster, (2) the heart beats with greater force, which increases blood pressure, and (3) vessels in the lower half of the body constrict, which forces more blood back into the upper body, usually within two heartbeats and without you even realizing anything is happening. When a person with POTS stands up, the brain triggers this response: (1) the heart beats faster, (2) blood pressure increases for some and drops for others BUT the lower-body vessels don't constrict, so blood isn't properly redistributed throughout the body.  The brain, which still senses a loss of blood, maintains the rapid heartbeats and abnormal blood pressure.  The brain and the heart aren't communicating properly and this, in turn, causes the autonomic nervous system to go haywire.  

The diagnostic criteria focuses on increased heart rate upon standing, but that's just the tip of the iceberg when it comes to POTS symptoms.  Like with Gastroparesis, these symptoms can vary from person to person and from day to day in terms of severity.  

Like I said, getting my diagnosis was pure luck.  I'd gone to a GI appointment with a list of symptoms I'd been experiencing (some of them for years) and on my way out the door the doctor commented that a lot of my symptoms sound like POTS and I should check in with my cardiologist.  I'd never heard of POTS, but seeing a cardiologist was nothing new to me because I've had Supraventricular Tachycardia (SVT) since I was a kid. I went home that day, googled POTS, and realized that I'd been experiencing it for years  I didn't know that that's what it was and, before desperately listing any symptom I'd ever had to help with a Gastroparesis diagnosis, I didn't tell anyone about my "episodes" because I just attributed the rapid heart rate to my SVT and the other symptoms to being overweight and/or out of shape and there was no way I was going to admit that to a doctor. 

It took me a few days to find a cardiologist that would see me regarding a POTS diagnosis.  A lot of the cardiologists in my area don't specialize in the syndrome because there is so much more to it than just the rapid heart rate, and I kept being referred to other providers. I finally found one who had expertise in it, and saw him a few weeks later.   

Symptoms vary from person to person (and day to day), but on a typical day this is what I experience (in this order) any time I stand up: 

      -- dizziness

      -- tunnel vision or darkening vision

      -- shortness of breath

      -- heaviness in my chest and limbs

      -- shakiness/tremors

      -- tachycardia

{None of this is noticeable to anyone but me unless I get dizzy enough that I need to lean on something, and I will die before I admit to anyone that anything out of the ordinary is happening}

The tachycardia aspect of POTS isn't the symptom that bothers me the most, but it's the one that stands out the most on paper.  Once my heart rate hits the 130s I start to feel pretty awful, and that's my cue to sit the hell down and chill out. The graphs below are screen shots from my cardiac tracking app, and are a pretty accurate picture of a normal day for me.

   

These "stats" were all taken over a 12 hour period on 3 separate days, but it looks like this pretty much every day.  The orange color indicates an elevated heart rate, which is anything over 120bpm.  The red color indicates a high heart rate, which is anything over 150bpm.  Blue is normal, a heart rate of 60-100bpm.  I spend just about half the day with an elevated heart rate and the other half with a high heart rate.  I very rarely have days where my heart rate is in the normal range.  I don't exercise.  Like, at all.  These numbers are just me resting or standing/walking to another room.  

I'm lucky that I can work from home, so I'm able to sit back down pretty quickly to get my symptoms under control. If I'm not able to sit down (like when a parent is picking up) I lean on furniture until my symptoms get themselves under control. Because my heart rate increases so much and so quickly during the day my body thinks I'm constantly exercising.  I'm always tired and slightly achy, and more often than not, I'm nauseous for a good portion of the day.  Taking a shower is the equivalent of running a marathon and I have to sit in bed and rest for a few minutes after before I can get up and get dressed.  If I'm also doing anything with my hair other than throwing it up I have to take breaks throughout the styling process. I've found recently that if I exert myself or am more active that normal, I pay for it the following day or two.  I was in a wedding in early September and we had a long day getting ready and then celebrating.  Nothing too crazy, I wasn't running around all over the place, but I was on my feet most of the day.  The next morning, as soon as I woke up my entire body ached, I had a headache, and the fatigue was so intense I ended up sleeping for most of the day.

Right now, there is no cure for POTS, but there are ways to make it a bit more manageable.  A good part of that is recognizing that your body just doesn't work like a "normal" person's and figuring out a way to be okay with that.  But there are some medications that can help; I just started a beta blocker (literally, just started it this morning because I don't like beta blockers and I've been putting it off).  Drinking a ton of water and increasing your sodium intake are both good for keeping things more manageable. I bought a half gallon water bottle on amazon and I refill it throughout the day; I'm drinking more water now than I have in the entire 38 years I've been on this planet combined. I discovered Liquid IV and I use that in my water like it's going out of style.  It's an electrolyte mix that has added sodium--I get an extra sodium boost and it flavors my water so it's not always boring.  And when all else fails I eat straight table salt, shaker to mouth.  It's gross and I don't recommend it but sometimes ya gotta do what ya gotta do.  

I'm still learning what works best for me, and it's pretty much trial and error on any given day.  I'm lucky that I'm still able to work and live a fairly normal life--25% of POTS patients are so disabled they're unable to go to work or school, so I count my blessings there.  And humor.  Humor helps.  :-)

Diagnosis: Gastroparesis

I was diagnosed with two forms of Dysautonomia this summer, Gastroparesis and Postural Orthostatic Tachycardia Syndrome (PoTS).  While I was very lucky to receive both diagnoses as quickly as I did, there are so many people who wait years for answers or who go misdiagnosed.

In a nutshell, Dysautonomia is an umbrella term that covers a variety of malfunctions of the autonomic nervous system (all the functions of your body that you don't consciously control).  These functions include breathing, heart rate, body temperature, digestion, and a whole host of other body functions that a person without dysautonomia doesn't have to consciously think about.  Symptoms vary in intensity and from person to person, but every single person with Dysautonomia is affected in a multitude of ways.  

The first form of Dysautonomia that I was diagnosed with is Gastroparesis (GP), paralysis of the stomach that causes food to either not digest properly or to take days or weeks to digest. Symptoms of GP include (but are not limited to) nausea, early satiety (feeling full after only a few bites of food), bloating, acid reflux, and abdominal pain. This is considered a rare disease and it's pure luck that I was diagnosed as quickly and as easily as I was.  

 

My family went on vacation in July like we always do.  I noticed that I wasn't very hungry all week (insanely unusual for me) and had had bouts of stomach discomfort in the weeks leading up to our vacation.   I ate a slice of pizza for dinner one night and ended up with a stomach ache later on, but I chalked it up to gastritis, which had shown up on an endoscopy I'd had a few weeks prior.  I still didn't have much of an appetite throughout the week and had mild stomach discomfort more often than not. 

 The day we got home from vacation, we had Chic-fil-A for dinner.  I wasn't very hungry, so only had a few bites of my sandwich and some fries.  A few hours later, I was in debilitating pain.  My stomach felt like it was twisting itself inside out and I had a deep, gnawing pain in the center of my belly, just below the breastbone.  I drove myself to the ER where they did bloodwork, gave me a "GI cocktail" and sent me on my way.  My stomach didn't feel right that whole day, but the worst of the pain was gone.  Fast forward to dinner that night.  Again, I wasn't hungry and wasn't feeling great, so I had {literally} 3 bites of roast beef and 1 cooked carrot before I started feeling nauseous and stopped.  That was all I'd eaten the entire day.  Four hours later I was in the ER again, this time with my mom for company.  I couldn't stand up straight because of the pain and nothing I did made it any better.  They gave me Dilaudid and Zofran for pain and nausea, did more bloodwork, and sent me for both a CT and an ultrasound of my abdomen.  Two hours later, the ER doc came in to let me know that my bloodwork, the CT, and the ultrasound all looked great.  "The only thing we saw on your ultrasound," the doctor said, "was a moderate amount of food in your stomach." I commented that it was strange that there was any food in my stomach, let alone a "moderate amount", because in the last 26 hours I had only eaten 3 bites of roast beef and a carrot, and that had been about 13 hours earlier.  The doctor kind of shrugged it off and told me to mention it to my GI doctor and ask if she wanted to do a stomach emptying test. Had that doctor not mentioned only seeing food in my stomach and had I not said anything about it being odd, I'd still be wondering what the hell was wrong with me.  As luck would have it, that quick comment would lead the a definitive diagnosis. 

I had an appointment two weeks later with my GI doctor.  At this point, I had very little appetite and was in pain every day, to the point where I was on a strictly liquid diet because it was the only thing that didn't send me to the ER. I'd lost 15lbs in 18 days. In the days leading up to my GI appointment, I was desperate for answers and relief and didn't think any of the ER doctors really took me seriously (one doctor, after my 3rd ER visit in 3 days, thought I was there for drugs but that's a story for another time). I sat at my kitchen table and I wrote down every single symptom I'd ever had in my life {seriously, every single one}.  I pored over every test in my patient portal and wrote down anything that looked suspicious or out of the norm.  I went to that GI appointment with 6 pages worth of symptoms, test results, and concerns, and I just dropped it all on her like a bomb.  

My doctor's first thought was to do a gallbladder function test to see if I was having silent gall bladder attacks. I was on board, but mentioned the interaction in the ER and that that doctor told me to mention it and see about an emptying study.  She switched up her original plan and scheduled me for a gastric emptying study the following week.  As I was leaving her office, she looked down at the pages I'd given her and offhandedly said "A lot of the symptoms you have here sound like PoTS.  You might want to follow up with your cardiologist to rule that out."

A week later I showed up for my gastric emptying study, ate the radioactive eggs and toast they gave me, and went on my merry way.  Two days later I got a call from my GI office confirming moderate Gastroparesis.  She started me on medication right away and gave me handouts on how to manage the condition.  There is no cure for Gastroparesis, but diet modification and eating smaller, more frequent meals along with the medication have helped my symptoms so much.  I still don't know what foods will trigger any symptoms, but I stick to my list of safe foods that I know my stomach can handle (hello, carbs!) and my GP has been pretty well managed for now.

Here's hoping it stays that way!

It's Dysautonomia Awareness Month

Ignoring the fact that I haven't updated here in quite some time...

I was recently diagnosed with a chronic illness.  Two of them, actually.  And, surprisingly, I hadn't heard of either of them before my own diagnosis.  And since October is Dysautonomia Awareness Month, I thought it might be a good idea to put some info out there for other people who, like me, might not have known what any of this was.  

So.  First things first.  Dysautonomia is kind of a blanket term for a group of disorders that are caused by problems with the autonomic nervous system (ANS).  This part of the nervous system controls the things that you don't normally have to think about, like your heartbeat, breathing, digestion, temperature regulation, etc.  When someone has dysautonomia the autonomic nervous system doesn't work like it should, which causes heart and blood pressure problems, breathing trouble, digestion issues, etc.  The two forms of dysautonomia that I was diagnosed with are Gastroparesis and Postural Orthostatic Tachycardia Syndrome (POTS).  

PoTS is the most common form of dysautonomia, where Gastroparesis is considered a rare disease.  Neither of them are much fun, but PoTS impacts my life far more than the gastroparesis does.  I'll go into detail on both disorders in another post (or two), but for now here's your warning...more dysautonomia awareness is coming!

Special Needs Mom?

Between my three children, we deal with ADHD, Tourette Syndrome, Obsessive Compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD), Intermittent Explosive Disorder (IED), and anxiety on a daily basis.  Those are just the diagnoses, it's not factoring in all the unseen symptoms and behaviors that go along with them.  We've got a damn pot of alphabet soup over here.  

The other day I was on the phone with one of our doctors and she referred to me as a "special needs mom" and I was sort of taken by surprise.  The rest of our conversation went like this:

Me: "Well, I wouldn't say 'special needs' per se..."

Doc: "What makes you think you're not a special needs parent?"

Me: "None of my kids are actually disabled or have Down Syndrome or cancer or a muscular disease or anything.  They're just tough kids.  Challenging.  There's nothing physically wrong with any of them. Most of the time you can't even tell there's anything wrong until Gerry starts ticking or Lincoln hulks out or something.  And even then they just look weird or bad."

Doc: "Do your children have specific diagnoses?  Do they need outside assistance or  different  supports to get through a typical day?  Do you and your husband need to parent differently than a typical set of parents would because of your children's diagnoses?  The answer is yes, yes, and yes.  Your kids might not be physically disabled but they have what are called "invisible disablities" and they are special needs.  It's not a bad word, and the sooner you come to terms with it, the better an advocate you'll be for them."

So, as hesitant as I am about it, I guess I'm a special needs parent.  And I don't say that I'm hesitant because I look at special needs as a bad thing or something to be embarrassed about.   I'm hesitant because I feel like it's a group that I don't have the right to say I'm a part of.  When I think of a special needs parent, I think of someone who is strong and calm and not afraid to speak up and speak out.  I think of someone who is put together and is always prepared for whatever of their kids' needs may arise.  I think of someone who can easily lift a wheelchair and any other gear necessary in and out of the car and the house, and who walks with their head held high, ready to go to war for their kid if the need arises.  I think of someone who plows through their day, educating other people and advocating for their kid without hesitation.  Someone who won't hesitate to storm into school or a building and demand that certain supports be put into place for their child.  Someone who navigates doctor's appointments and therapies with ease, and who knows just as much (if not more) about their child's disability and needs than the actual doctor does.  I see someone who is worthy and tough and capable.   

I don't see myself as a special needs mom because I don't think I'm good enough to deserve that title.  They're superheroes and I don't know what the hell I'm doing at any given moment.  Literally, no clue.  I don't know how to respond in situations where my kids' invisible special needs become apparent, and I lose my patience far more than I should.  I get flustered trying to keep appointments and meds and symptoms/behaviors in order.  I don't know the ins and outs of the school system or who I need to contact to get which services.  I had to google the difference between an IEP and a 504 Plan.  Most of the time, I just try to get us all through the day without anyone losing a limb.  I'm not strong or capable or calm or put together.  I'm not worthy.

But.  

I could be.  I don't know what that will look like {because I will never have my shit together like those parents do}, but I'll embrace it. 

Accurate depiction of what it feels like with my kids ;-)

 

 

Happy 11th Birthday, Bailey!

I started this blog a little more than 10 years ago, shortly after Bailey was born. And here we are, celebrating her 11th birthday. 

In true tween fashion, she's developed her own style and is very particular about how she dresses.  She started middle school this year and made honor roll every quarter.  She's not the girly-girl that she used to be just a few short years ago, now preferring dark clothes, no makeup and flat shoes.  

Bailey's kept her sass, but she's developed this biting sense of humor that surprises me at times.  She is definitely her father's child.  She's sweet, she's funny, she's independent.  Headstrong, intuitive, and creative.  

I love her.

I can't wait to see the person she grows into.  If the last 11 years are any indication, we're all going to be blown away.  :-)

Update: He's Not Just "Bad"

It's been a long year.  Safe to say that it's been my worst year yet.  

Pandemic aside, we've been dealing with a lot of issues here at home.  Just when we thought we'd gotten Gerry's Tourette's and ADHD fairly under control we were hit with a diagnosis for Lincoln that's been at least 2 years in the making.  

I'm going to preface this by saying that physically he is totally fine and that our situation could be much, much worse.  I know this.  But damn if it's not been a hard, exhausting, lonely road...and it feels like it's just stretched out in front of us for miles and miles.

When I say this diagnosis was a long time coming, I'm talking YEARS.  We took him to the pediatrician when he was 3 because we were concerned that his tantrums weren't normal.  The doctor said that he was just testing boundaries and suggested that we use a bed sheet to tie him to a railing in the house when he had a tantrum.  {We have never tied him to anything and have since switched to a new pediatrician}.

After that appointment, we tried to be more strict with discipline and what we let him get away with.  There were times where he was physically carried to his room during a tantrum.  Privileges were lost.  Things were taken away from him.  None of it worked.  People commented on his behavior and hinted that lax parenting made him "bad".  As with Gerry, we dealt with {well-meaning} family members suggesting that "a smack on the butt would get him to knock it off".  For 2 years.  And he just kept getting bigger and stronger and angrier.  It got to the point within the last few months where we just didn't go anywhere.  We skipped weekly dinners with our families and public outings, and just stayed in because at that point it wasn't a matter of if he would rage, it was a matter of when.  

Lincoln was diagnosed with Intermittent Explosive Disorder (IED) and Oppositional Defiant Disorder (ODD) last week and it's been a long time coming.  In a nutshell, IED is a mental illness characterized by a lack of impulse control with rages/tantrums/anger that is completely disproportionate to whatever scenario may have triggered it.  In Lincoln's case, anything could trigger him.  Literally anything.  Something as tiny as his character getting hurt in one of his video games or us being out of his favorite iced tea will often lead to screaming, kicking, punching, someone bruised or some object broken.  We call it his "hulk outs" because in the blink of an eye he will go from my sweet, silly boy to a raging lunatic who doesn't care who he hurts or what he destroys.  It's scary and sad and he absolutely can't help it.  I've read that people who suffer from IED have physical symptoms (like racing heartbeat, a feeling of itching/burning in their skin, headaches, nausea, etc) that get worse and worse until the rage comes on, and that rage is the only thing that helps those physical symptoms to go away.  Lincoln has complained of a headache and not being able to breathe during an episode, but I don't think he even knows what a racing heart is let alone how to describe it.  Episodes last around 30-40 minutes (sometimes less on a good day) and so far have happened up to 4 times in one day. Afterward Lincoln is exhausted.  Sometimes he falls asleep right where he is on the floor; other times he just lays there with his eyes closed until the exhaustion passes.  He's always apologetic and, sometimes, embarrassed afterward.

Two years.  

Two years.  When I think about all that time wasted that we could have spent getting help, it makes me so angry.  I'm mad at the doctor who told us he was just pushing limits.  I'm mad at the people who gave us looks and made snide comments whenever he lashed out.  I'm mad at myself for knowing in my gut that it was something more than just him being a "difficult child" but letting other people make me doubt myself.  I'm mad that we spent years punishing him for something he couldn't fully control. I'm just mad.  About all of it.

The diagnosis doesn't bother me so much as the reality beyond it.  I've been researching the hell out of IED and joining support groups online and...it's not pretty.  Those with IED, particularly males, are more prone to substance abuse, self harm, suicide.  Jail, violence, poor grades, poor sleep.  I've been talking with people in one of my groups who actually have IED and they have not led easy lives.  Poor relationships, difficulty keeping a job, few friendships, divorce, alcohol abuse.  There's no cure, and I have yet to come across anything that's not negative about this. 

I can spin Gerry's Tourette Syndrome and ADHD in a positive way.  It makes him unique and he's creative and more sympathetic because of it.  His TS doesn't hurt anyone, and a lot of the time we're able to laugh about his tics.  I don't laugh about Lincoln's IED and I can't find a positive way to spin it.  It's scary and it hurts people and I don't know what the hell to do to make it better or easier on him or anyone else.  And I hate that people will see him as someone to fear or to stay away from because of it.  Because they will.  All it takes is witnessing one hulk out and you can completely forget that he's a sweet, silly, entertaining boy.  All you see is the anger and the destruction, and it's hard to see him as anything else afterward.  

So...that's where we're at.  And why we've been quiet for awhile.  

After a hulk out...worn out, red-faced from screaming, exhausted

This One's Personal

This post is a really hard one for me to write.  I've shared a lot of thoughts/feelings and family moments here over the years, but this is a really personal one for me.  

If you look over my old posts, you'll notice that I went almost a year without writing anything here.  It's not that I didn't have anything to say or anything to write about or even that I was too busy to sit down and write things out.  I was struggling big time with my mental health and I just didn't have it in me to physically, mentally, or emotionally do anything but survive.  

I'd like to blame this bout of depression on the pandemic, but the truth of the matter is that I've been dealing with it off and on since high school.  I was just really good at hiding it.  I've been medicated since high school and the few times I'd fall into the trap of depression, it only lasted a few days and then I'd "come out of it".  This last time was different and, truthfully, it scared me.  There is so much more to it  than what I’m writing here, but I just don’t have adequate words to describe what those few months were like. 

Outwardly, I was the same as always.  Smiling and saying good morning to all my daycare families every day, playing with the kids, laughing and joking, posting stupid silly stuff on Facebook, being my normal "find the silver lining" self.  I was dying on the inside and hiding it amazingly well.  So well that even my husband had no idea and to this day doesn't know how bad it was.  And it went on for months before I even realized how bad it was myself.  I'd find myself zoning out while washing the dishes, staring out the window at nothing while the water ran.  I couldn't bring myself to do simple tasks like straightening up the house or doing the laundry, and instead of doing anything about it I'd just tell Scott that we had a busy day and I just didn't have the time to do it all.  I either felt extreme sadness, overwhelm, feelings that I was a horrible wife, mother, and friend...or I felt nothing at all.  And I don't know which was worse.  It's a strange and scary thing to realize that you're not feeling like you used to.  All the things that I used to look forward to and that brought me so much joy were just things to get through. Buying the kids' Halloween costumes, Christmas shopping, all the little traditions that we've enjoyed during the holidays for so many years.   I was there but I wasn't there.  Most days, getting through the day was literally my only goal.  

I ran on autopilot--get the kids online for school, wash dishes, make lunch, change diapers.  I was doing the absolute bare minimum and it was taking everything in me to just do that.  I spent little to no quality time with my husband and blamed it on the fact that our youngest suddenly refused to sleep in his own bed during the pandemic, and would only sleep with me in my bed.  He'd be ready to go to bed around 7:30pm and I'd go up with him, most of the time leaving Scott to spend the rest of the night alone on the couch.  I'd spend a good chunk of the time staring at my phone, stuck in my own head, and falling asleep absurdly early.  I stopped doing all the things that I normally enjoy.  Reading is literally my favorite thing to do but I just couldn't.  I didn't have the attention span and I couldn't find enjoyment in it like I used to.  I couldn't write something if you were holding a gun to my head.  There was a voice in my head 24/7 telling me that I was a terrible mother, a shitty wife, a disappointment to everyone around me, and it wouldn't stop.  When I say that surviving the day was my only goal, I'm not exaggerating.  

I started drinking way more than I normally do.  I feel like that's such a cliche, but it's the truth.  As soon as my last daycare kid left, I was in the kitchen mixing a strong drink.  I used the excuse that it was a long, hard day but the truth of it is that the buzz was the only time I felt anything less than miserable.  There wasn't that voice in my head screaming at me that I was neglecting my husband, neglecting the house, neglecting the kids, being a shitty person.  Smiling and laughing came more easily.  I was a better mother when I drank.  I had more patience with the kids, I gave better advice, I listened better.  I didn't feel so bad about being such a shitty wife (and, my God, I really was a piss poor excuse for a partner) and I was able to convince myself for a little while that all married couples have these little blips when they've been together as long as we have.  I didn't feel good, but I didn't feel bad and that was okay with me.  At one point, after I'd sent Scott to the liquor store more times than any person not throwing a wild party should, he jokingly said "You good?  I feel like you have a problem."  I remember getting annoyed with him and turning it around on him.  "Why would you ask me that?  One drink is not 'having a problem'.  I thought you liked it when I was a little loose. You think I'm drinking too much, fine.  I'll never do it again",  I lied while adding a splash of cranberry juice to my Grey Goose/Malibu mix. I snapped at him and tried to turn it around and make him think he was being ridiculous and the one in the wrong when, truthfully, there was a 2 month period where I didn't go to bed sober. 

I distinctly remember the moment when I realized that maybe I needed more help.  I had just gone upstairs (to take my bra off because there's no better feeling at the end of a long day, am I right?), and Scott was playing "The Monster Game" with the kids.  I walked down the stairs and stopped just before the landing and I heard them all screaming and laughing while they played. They were having so much fun.  I can still remember the feeling of the cool wood bannister I had my hand resting on and I stood there and thought "They'll be okay.  They'll be totally fine without me".   It was a fleeting thought, one that just whooshed uncontrollably and completely unbidden through my mind and I don't want to be dramatic but it scared the ever-loving shit out of me.  I called my family doctor as soon as the office opened the next morning.  

Walking into that office and saying "I'm having a really hard time and I think I need help" was easily one of the most uncomfortable and scary things I've done in awhile (when I called to make the appointment I told the receptionist that I just needed a check-up).  I'm not one to pour my feelings out or to want to talk through my problems.  I tend to stay bottled up in my own head and rarely ask for or admit that I need help.  It was awkward and embarrassing and I kind of wondered if maybe I was blowing things out of proportion.  By the time I left that appointment, I had a prescription for new meds, orders to talk to a therapist, and another appointment scheduled in three weeks to see how everything was going.  

It took  a few different prescription changes and quite a few weeks before I started to feel better than I had.  Not good, but better than I was, and that's enough for me for now.  I still struggle with depression and self loathing and I'm pretty sure I always will, but it's nowhere near as bad as it was and I'm so glad I made that uncomfortable and awkward phone call to my doctor.  

Publishing this post is insanely uncomfortable for me, but I feel like there's this stigma surrounding mental health that makes those of us struggling with it feel embarrassed and like we need to keep quiet, and it shouldn't be that way.  We're still good parents and spouses, and we're still fully capable of being valuable and productive members of society.  We just need a little help sometimes.  Everyone does sometimes, and there's absolutely nothing wrong with it. 

My daily cocktail...no shame

March 12, 2020

The last day anything was "normal".  

I was just reading over old blog posts from right after the pandemic started and wondering if I was really that naive to think everything would be totally fine in a few weeks or if  everyone else actually believed it, too, and that we were all way off base together.

It's been more than a year since the pandemic started and nothing is back to normal yet.  We're still required to wear masks whenever we leave the house, restaurants and businesses are still not operating at 100% occupancy, and we're all just over it. Since everything began 13 months ago, every one of my children and their friends have celebrated at least one "Covid birthday" where parties were skipped in favor of quick drive-bys.  Lincoln has had two quarantine birthdays and Bailey will hit her second one in June.  It's wild.  Our kids didn't go trick or treating this Halloween and Thanksgiving and Christmas were spent with just a small portion of our family since Covid regulations allowed for only 10 people at inside gatherings. For the first time in my 36 years on this earth, I didn't celebrate the holidays with my grandparents. It's been exhausting.  And frustrating.  And sad.

Scott was back in school 4 days a week back in August, with one day virtual.  He's been back full time since January. It's a struggle for him and every single teacher out there.  They've had to learn and adapt to new virtual platforms, while still teaching their in-person students, and they've had very little support from administration.  In Scott's district (and I'm sure many others), teachers were given the option to come back to the classroom full-time right away, mid-pandemic, or risk losing their jobs.  There was no option for them to continue working virtually from home and I can't tell you how many times he was notified of a positive Covid case in his building.

 

Bailey just went back to school in person in February, after almost a year of virtual schooling. Scott and I struggled with this decision, but ultimately let her decide.  I'm actually glad that she went back.  Nothing is what it should be or what it would have been like had we not been teaching and learning in a pandemic, but she needed the social aspect of it all.  Virtual learning was really hard for her and her mental health took a huge hit.  Her grades slipped and she literally spent 22-23 hours a day holed up in her bedroom.  By choice.  Now, she still spends a lot of her time in there (but I think that's just her being a pre-teen and enjoying her own space) but she gets to go out and go to school.  She's made new friends, brought her grades up, and seems to be doing better.  

Gerry is still home.  He could have gone back in person the same time Bailey did, but I'm glad we chose to keep him home.  He struggles with wearing a mask for long periods of time and his Tourette's has gotten so much more noticeable in the last year that I'm truly not sure how this year would have gone for him.  I know it wouldn't have been easy. 

 Lincoln is set to start Kindergarten in the fall, but no one knows what that will look like.  We weren't expecting things to look like they do now when schools closed last March, so I'm not keeping any sort of hope that things will magically be back to the way they were in a few more months.  I've learned my lesson there.  

I am...I'm plugging along.  With the kids all home the past year, I haven't gotten much of a break or time to myself and it's been tough.  I think I can see a light at the end of the tunnel, but that's the best I can say about the last 13 months.  

Moderna, Pfizer, and Johnson & Johnson have all created a vaccine and everyone has been urged to get themselves vaccinated.  I don't see the vaccine as being this all-powerful weapon that will save us and allow us all to get back to normal right away like many people do, but I did get vaccinated, if only to prevent myself from unknowingly passing the virus on to someone else.  

That light at the end of the tunnel is still very far away.  So far away. But I'm looking for it and I'm hoping to see it sooner than later.     

Big Emotions

 10 weeks.  

That's how long it's been since classroom learning ended for the year and distance learning began.  How long it's been since children across the area have seen their friends and teachers in person.  How long it's been since we've been stuck in limbo in our homes.  

7 days.  

That's how long we've got until our school year officially ends.  How long until Gerry is officially a 2nd grader and Bailey is officially a middle schooler.  How long until whatever summer break is supposed to look like begins.  

And I'm so angry.  And sad.  And confused.  A little worried.

I feel like we were cheated out of the end of the school year and all the excitement and happiness that goes along with it.  When distance learning began back in March, I hated it.  With a passion.  I had no clue what I was doing when I began, no clue how to keep my kids focused and actually learning, and no way to tell whether they were actually learning anything or not.  I hated taking hours every day to get my kids distance learning in.  I hated trying to keep the big kids focused on their work while keeping Lincoln and my daycare kid occupied and away from the learning space.  I hated that I had no help from Scott because he was working and doing distance learning lessons and classes for his students.  I just hated it all.  And I hated it every day.  Right up until today.  

This morning we had to return the kids' iPads to school.  We picked up the iPads a few months ago so the kids could use them for their distance learning lessons, and I wasn't quite prepared for how emotional I would feel about returning them.  These iPads were used to complete lessons online, yes, but they were also used for Google class meetings.  Twice a week, the kids were able to meet as a group with their teachers.  They read books, talked about what they've been doing since being at home, played games.  It was a way for everyone to stay connected while not being allowed in the classroom.  It wasn't as good as being in the classroom or being able to play with friends on the playground, but it was the best we were gonna get and my kids looked forward to their meetings every week.

Last Thursday was Gerry's last class meeting on Google.  His teacher read the class a book, the gym teacher played a game with them, and then both teachers talked about how much they were going to miss the kids.  It was really sweet.  Then, as they were all saying their goodbyes for the last time, one of the girls started crying.  Not small tears, but big gasping sobs, and she wouldn't sign off the meeting.  The teacher kept telling her "It's okay, I miss you, I love you, I can't wait to visit you next year" and it hit me just how important this all was for these kids.  

I love our elementary school, everything about it.  The teachers are absolutely phenomenal, the principal is amazing, and there's a comfort and a feeling of welcome and camaraderie that is hard to find in larger schools.  Our school is considered low income and a very large percentage of the kids rely on school for steady meals.  Often, the teacher is their main source of comfort and normalcy from August until June.  This year, though, the kids lost all of that.  Schools closed for the year  due to Covid-19 on March 13th. For a lot of kids, especially those in our town, that was the very last day that anything was "normal" for them.  Quarantine and coronavirus are scary enough for a young child to grasp, but on top of it all many of them lost the only constant in their day to day lives when school closed fairly unexpectedly for the year.  Our district continued to hand out meals daily for every child in the district who needed one, which was amazing.  But human connection is just as important as being fed and these poor kids didn't get that they way they've been used to and I can only imagine how hard it's been for them.

The time right after spring break and straight through to the beginning of June is such an exciting time for kids.  The workload is lessening, it's getting warmer and sunnier outside, and there's just a general feeling of lightness.  The students and the teachers know that summer break is coming and it makes the next few weeks much more enjoyable.  

In Gerry's final meeting last week, his teacher mentioned something about the kids "coming downstairs" to visit her next year and it really hit me.  It seems so unimportant and not at all a big deal, but once the kids in our elementary hit second grade, their classrooms are all upstairs on the second floor.  Pre-k, Kindergarten, and 1st grade all have their classes on the first floor.  Moving up to the second floor means they're older, they're moving up, they're becoming more responsible.  They're not the "little guys" in the school anymore.  And I didn't even realize it until his teacher said something.

As for Bailey...well, I'm heartbroken for her.  The move from elementary school to middle school is a big deal in our district.  The 4th graders have a day at the end of the year where they get to visit all the teachers in the building to say goodbye.  They go from our tiny elementary school where they've all been together since Kindergarten to the middle school, where FOUR other elementary schools in the district join them.  It's much, much bigger, they have lockers and multiple teachers and more responsibility, and it's just a whole new world for them that they're missing out on getting acclimated to this year.  They have a day where they ride the bus to the middle school and get to spend the day shadowing a student, checking out the cafeteria and the lockers and the gym and pool.  This year, they had to settle for a virtual tour on their iPads.  Their teachers have done everything possible to make the end of the year as wonderful as possible for them, but they've all missed out on that sense of closure that comes with a normal ending of the school year.

When the kids all left their classrooms on March 12th, everyone assumed they'd be back in 2 weeks and would pick up right where they left off.  Instead, coronavirus and quarantine, took that away.  They didn't get to say a proper goodbye and thank you to their teacher or their friends.  They've missed out on the sense of fun and excitement that permeates every school for the last month or so of the year.  They've missed the Father-Daughter Dance, Mother-Son Night, Field Day, field trips, middle school visits ,Moving Up Ceremony, and weeks and weeks of fun and memories with friends with whom they've spent the majority of their awake hours for the last 4 years and who they may not get a chance to really get to know in their middle school years.  And that breaks my heart, especially for the 4th graders and their teachers. {Seniors...oh my goodness, Seniors. I can’t even begin to imagine how shitty this is for you. You have my sincerest sympathy.}

And, yeah, in the grand scheme of things this is just a blip on the radar and so many others have it worse.  But as a mom?  As the one who raised these kids from birth until this very moment, and been there for all the moments in between?  These moments are everything.  And I feel like we've all been cheated out of them this year, and writing about it is how I'm dealing with my emotions about it without completely losing my shit. This morning I traded in the kids' iPads for bags of their belongings that were left in their desks and classrooms when school closed unexpectedly this year.  Those bags were yet another reminder of what we've all missed out on. 

I know that a few years from now we'll remember 2020 and make jokes about how we were all quarantined for a few months of it.  These moments that feel so big right now won't be such a big deal then, and we'll (hopefully) be able to laugh at how silly and over-the-top we made it all out to be.  But right now, these emotions are still big, and the loss is still fresh, and I've learned that when it all feels too heavy to go through sometimes the only thing to do is to embrace the emotion and hang on until you're through it.  So here we are, just hanging on.  

Quarantine

 Last time I blogged here was Gerry's birthday, way back in January.  Shortly after that, the world went to hell in a handbasket and I've just not been in the right frame of mind (or had a moment truly to myself) to write here.  4 months later, we seem to have more of a handle on things and here I am.  

Shortly after Gerry turned 7 (beginning of January), I started paying attention to rumblings I was hearing in the news about a new virus called Covid-19 or Coronavirus.  It had started in China and there was talk of it making its way to the US, but no one here seemed too concerned.  A lot of people said it was like the flu and no big deal.  A lot of people said the chances of it making its way here were slim and, even if it did, there wouldn't be that much hardship.  

Late February/early March, I started hearing even more about coronavirus.  Countries were being decimated by the virus, closing their borders, quarantining their people, and putting heavy restrictions in place.  Facebook was flooded with posts by people in other countries who were a few weeks ahead of us in terms of virus timeline.  These people urged the rest of us to take this seriously, to social distance, to play it very safe so that our country wasn't hit as hard as theirs were.  

Early in March, I heard about how areas near us were being hit hard by the virus.  People were walking around asymptomatic, going about their normal routine and unwittingly passing the virus on to everyone they came into contact with, who passed it along to everyone they came into contact with and so on.  There is no vaccine and very little was known about prevention and how it would affect certain people.  I got an email from the kids' school just checking to see if we had internet and computer access at home "in the event that distance learning may occur".  

Friday, March 13th....we were officially in the midst of a global pandemic.  Press conferences were being held all over the place, thousands were dying by the day, and entire regions were being shut down by the government.  That afternoon, our governor announced via press conference that all schools in our region would close for the next two weeks to sanitize and help combat the effects of Covid-19.  My kids were thrilled to have a random few weeks off in the middle of the year.  Little did they know, March 13th would be the last day they left their classrooms this school year.

Following the governor's orders, I shut down my daycare for 2 weeks, too, with plans to reopen on Monday, March 30th.  Because of Spring Break, the kids were home until the second week of April.  I went from having 8 kids in my daycare to having 1.  As of this posting, I've officially lost 3 kids as a direct result of the pandemic, and all but one have stayed home since March 13th.  

Our county was placed under a Stay Home order.  Businesses and churches and daycares closed and only those deemed essential were allowed to remain open.  People were required to wear face masks when leaving their homes, and households were quarantined.  Employees were required to work from home whenever possible.  Playgrounds were roped off, previously planned activities were cancelled.  Our country was, for all intents and purposes, shut down.

Then came the announcement that schools would be closed for the rest of the school year.  Just like that, millions of parents and caregivers became homeschool teachers as our kids began distance learning.  It's been...an adjustment.  Not necessarily a bad one for us, but that's a post for another time.  

My kids have had to adjust to being homeschooled and not seeing their friends or teachers.  We haven't been to a playground or the movies or to the mall since March.  Birthday parties have been cancelled and we've been having birthday "drive-bys" instead to minimize contact.  Doctors visits have become "telehealth visits" where, instead of going to the doctor's office patients stay home and video call with their physicians.  Toilet paper and hand sanitizer were a hot commodity and sold out in most places for months.  Customers were limited to a certain amount they could purchase at a time so that there would be some for everyone.  For a little while, sidewalk chalk was hard to come by after viral posts popped up from parents who used chalk and painter's tape to keep their kids entertained outside for more than a few minutes.  

It's been such a strange time, but we're slowly getting back to (what is now) normal.  Our county is set to open in the yellow phase of quarantine by June 5th.  This means fewer restrictions in place.  We're not fully open yet and it will be a few more weeks before we're in the green phase of reopening, but we're getting there.  Eventually, I'll write a post about how the quarantine affected us personally, but for now, this is what I've got.  It's been an odd few months, but we're slowly working our way back.