Scenes from the Immune System Wars

Well, I am no longer taking the medication that I grumbled about in the last post.  It was just too much for my system.  That means I have flunked every intervention for my Mixed Connective Tissue Disease/ Lupus except the entrance level drug I have been on for years and short bursts of prednisone which are bad for me on many levels.

My rheumatologist wants me to increase the infusions of Immunoglobulin  (Igg) )that I take subcutaneously every two weeks.  In principle I think this might be OK.  I mean, the stuff always makes me feel better after I go through the first 24 hours following the infusion.  The first 24 hours can be a little iffy.  I get headachy and maybe a low grade fever.  This is normal due to the fact that I am infusing myself with other people’s plasma and immune “goblins.” My body thinks they are foreign invaders and reacts to the threat.  After that, I generally get a nice surge of energy.  I also feel that energy wane the closer I get to my next infusion.  So, all in all, more or more often might not be too bad.

However, there is a problem.  The problem has nothing to do with me or my health: It has to do with insurance.  The treatments are wildly expensive.  I think each time I order two doses, so a month’s worth, which includes medication plus supplies, it costs in the neighborhood of  $15,000.  You can add that up by 12 months a year and see why the insurance company would rather I just… you know… die.

So many questions come up here: Why is the cost so high for a treatment that has literally been around for thirty years?  I mean, different drug companies mix it differently and that does make a difference, but generally it is the same thing.  Also, why have the copays shot up in the last couple of years?  I have a copay program through the manufacturer that helps pay the cost that is left over after the insurance and before my deductible is eaten up.  That price used to be $150.  It increased to $250 and stayed there for a few years.  This year, I have found out that it is now over $2000.

So, my husband has switched jobs twice this year and in addition to that his company was sold.  Therefore we have had three different insurance companies.  For most people this is no big deal.  For me it is a nightmare.  I have been on the phone, daily, for two weeks, trying to get my medication ordered and approved.  I have to go through: my immunologist, the specialty pharmacy, and my insurance company.  There is someone either lacking information or stonewalling me at two of those three places at pretty much every turn.  We have been on vacation this week but it doesn’t matter.  I spend an hour or more trying to advocate for myself or I will go without and I will get sick and have pneumonia again.

After so many rounds of this shit I start to feel dehumanized.  No one seems to have the same fucking answer twice. My immunologist is great.  They have called and answered question after question and tried to resolve things and then I will call the next day to try and order only to be told it is not approved because there are more questions. At this point, it is pretty obvious I am going to go without my medication.  Today I called the specialty pharmacy, doctor and the copay people.  I am asking the copay (the manufacturer) to send me a one time dose of medication until all of this gets sorted; again.  Guess what? They have to think about it and it’s a Friday: Fuck me.

I consider myself pretty battle worn and tough at this point but this has gotten to me.  I cried this morning.

We are on vacation in the desert and there is no way a UPS truck can find us so on the lucky chance SOMEONE provides my medication next week (I brought all the leftover supplies I need to do the infusion.) I have arranged to have it delivered to a local pharmacy.  I mean, I have done all the foot work and then some.  COME ON!

This all boils down to one thing: GREED!

The American medical system is broken.  It is not in the process of breaking; it is already broken.  We are screwed, folks.  If I were: elderly, sick(er), less obnoxious, whatever, I have NO idea when I would get my medication at all.  This is life saving stuff.  No one should have to fight for it.  It is the same as people going off of chemo and just dying when their insurance says they are out of money and too bad.

I have lived in a European country that had “socialized” medicine.  Guess what? IT WAS GREAT.  As a student, I paid a few dollars worth a semester and saw the doctor for free and paid about $5 for a prescription.  A professional, already earning a salary, would pay more.  When I asked a friend what she thought of that she said, “I pay more and you pay more later. That is how society advances and we take care of one another in a humane fashion.” Oh, and by the way, the doctors were all well trained and competent and easy to get in to see and made house calls if you were contagious!

Wow. How civilized.  We are supposedly a “Christian” country. There is a lot wrong with that idea but for one thing, it’s wrong.  We aren’t the least bit willing to care for our fellow being.  Instead we have created a system that thrives on greed and gloats at death and that resists reform because the people that benefit from it are paying the people who pass the laws and preach “Individual freedom.”

Sorry but you can tell that I am mad.  I am really angry.

We ate at a restaurant in Kanab, Utah today.  Our waitress looked about 40, I think.  It was hard to tell because she was in desperate need of medical care.  The poor woman had no teeth and had not had them for some time because her jaw was severely caved in.  On top of that, she had on a wig to cover up her baldness.  All of that combined with a shocking amount of make up, which was well intentioned, made me think, “Why can’t she get what she needs?  This is stupid.”

Do you think a waitress has dental insurance?  No.  Even if she does, dental no longer pays very much at all.

What can we do about it?  Vote.  I guess that is it.

It is hard to do much else.  I mean, I belong to a group that advocates for people with rare immune diseases and that lobbies in Washington, D.C. but as we all know, not much happens there anymore.

It is depressing.

The only way to live with it is to do what I do and just live day to day in the best way I know how.  I hope I get my medicine before too much time passes.  If I don’t, well, I will start to run down, like my energizer batteries will wind down.  I will just cross that bridge when I have to.  Between now and then I will keep making difficult phone calls…EVERY DAY.  Hopefully all of these places and people will get so sick and tired of me that they will relent!

However, I do know that the people that answer the phones are often the ones with little power to make things happen.  That is just the way of things.

Or, as one of my heros says, “This is the Way.”

Indeed it is, Mando.

So I have come to a place in my journey with Mixed Connective Tissue Disease where the Lupus part of it is no longer behaving with the entry level medication of Hydroxychloroquine. (You might be familiar with this drug from early on in the pandemic when Pres. Trump touted it as Covid prevention/cure.)  There was a run on the drug and a lot of folks like me ran out of it.  I was fortunate to have doctors who called in prescriptions well ahead of the crowd so I would have plenty.

In any case, I have been taking Hydroxychloriquine for almost 13 years and when I have a significant flare of the disease I break down and take prednisone in as small a dose as possible. Well, that plan is really  not working anymore.  My tests are really OK but I have started to have significant swelling in my hand.  My dr. is calling this a break through of the disease.  I guess that is what it is. And to be honest, fatigue and joint pain are my constant companions unless I get a mega shot of steroids.

So last Friday, with great trepidation, I took my first Benlysta shot.  It is a weekly, self administered dose or a once a month infusion.  (I don’t have any  veins to infuse so that is not an option.)  I shot myself in the leg and waited to see how bad the side effects would be.  I read up on them, of course, and I have had a feeling of utter dread in my stomach leading up to trying this drug.  Every time I start a new drug, a significant one like a Lupus medication that supresses my immune system further, I am scared. This particular medicine comes with really nasty side effects.  Some of the top are: depression, insomnia and suicidal ideation. Sweet, huh?

So far I have an upset stomach, a headache and I feel gloom and doomy as well as tired and sore.  The tired, sore and upset tummy could just be me..  it’s hard to tell.  But the headache and the gloom and doom are not good.

The thing is, though, my hand quiit swelling. Damn it! I don’t want this.  I feel worn out and run out of the ability to be flexible to try new things. I am beginning to wonder if I have reached the edge of what I can do with Western medicine of the traditional kind.

A couple of weeks ago when I was talking to the PA for my psychiatrist, she gave me a ton of links to alternate practioners and naturopathic doctors in Austin.  She was very clear that there is one particular school that trains people adaquately in her opinion.  Of course, none of these folks can take insurance so that makes it difficult.  She did, however, mention one that is a D.O.  or doctor of osteopathy.  D. O.’s are recognized as the same qualifications as an M. D. but have a slightly different education.  They are more focused on the whole person.  Maybe I need to try that out.

I always want to proceed with caution here for a number of reasons but one of them is because about sixteen or seventeen  years ago, I went to see a doctor who did not take insurance but who claimed to be able to cure me.  He put me through a two day testing proceedure and sent me home with a number of injections to do on my own as well as drive back the 90 miles to see him.  I had to pay all of this out of pocket.  I ended up getting even more sick and having to find a cure for the guy’s cure and paying several thousands of dollars.  That whole fiasco is reason #1.

Reason #2 is that I have been treated by other alternative practitioners since then that meant well and whose medicines work for many people but I am allergic to.  It is strange and weird and, “no one has ever had that reaction,” is a phrase I have heard before.  I am just very wary of everything now.

However, after getting down to this point I am beginning to think I should have another go.

Ah, Reason #3: I suspect anyone who is not taking insurance.   I know there can be very good reasons and that American medical insurance is horribly flawed.  However, there is a very thin and often indistinguishable line between greed and whatever constitutes ‘real science.’  I don’t feel like I am a good judge of those things so I tend to err on the side of the super educated folks.

So the first week on the new drug, Benlysta, has come with side effects.  The worst one and one I cannot simply ‘deal with’ is insomnia.  As you know if you read this blog, I am an insomniac.  I don’t need help in that area. In fact, it looks like I will have to take more medicine to counteract this effect.  I don’t like taking one medication to deal with another. I read that Benlysta side effects could ease for some people so I am trying to stick with it.

I guess I will just see where we go from here.  I have been praying about it and trying to realize that the outcome is not up to me in any case.  I just get frustrated at how little control I have over my health.  Of course, this is a recurring theme for me.

So, I am on a new med that can make you crazy and I am crazy about whether or not I want to take this medication. That’s crazy. Right?

 

 

 

 

I got stuck.  Somehow it is like my foot got caught on a sticker and I couldn’t pull it out.

I danced around and bent over and used tweezers and said all kinds of bad things and nothing worked.

The more I fought it the deeper the   damned thing seemed to push itself in.

And then I got angry: So angry that I ugly cried.

And somewhere in my ugly tears I think I shook it loose.  I’m not sure,  yet.  But maybe.

For all I know it is going to make a reappearance and fuck up my life again, no matter how angry I get.

And you know what?  That makes me angry.  It really pisses me off.

So all I can do is  ask what it the Hell is going on with me and the stickers?

Why in the Hell do I step in them every single time??

How do other people glide over them and not seem to be injured at all?

What in Hell does it mean that my path takes me through the same patch every damned time?

I would have thought I could have built a tougher skin, some resistance for once.

But how in the Hell does it happen every fucking time?

I try to smile.

I keep my chin up.

I am patient as I hop around on one foot ,the other bleeding and torn, “I’m fine.”

No. Not really.

Not  even angry, not really.

But it helps. Because the anger burns me like a fever and helps me find the handholds of my way back up from the little patch of pricks I seem to have fallen on to.

But really?  What the Hell?

And why do I climb and dance around?

It’s You.  It’s always, always You.

I will never stop getting up, full of holes, pricked, sticked and angry as hell,

because of You.

And you know what?

I may never know why in the Hell I have to fall, but I do know where I learned to climb out again.

Thank you, Mama, for letting me see the anger that kept you burning, and  for showing me the handholds.

I know. That is the age old question, right? All of us who already believe in a Higher Power and even some who don’t have no problem dreaming one up when things seem to be going particularly well.  But what about the rest of the time?

How do we understand our lives when things seem to be going all okey dokey for us and we look over at our neighbor, say our international neighbor, like in Ukraine for instance, and see they are living in the worst sort of hell, and think there is some sort of pattern, some sort of sense to it all?  It doesn’t make sense that a loving Creator would play favorites, does it?

Or, how are we to understand the fact that if I am sick or my job is lost but someone else is dealing with having their child murdered by police, that there is balance in that suffering?  How are both equally valid and equally important heart aches? And I have to add an edit here, earthquake’s, absolutely nothing we can do about those, yet they tear apart families and communities, much like war.

This is all very confusting, isn’t it?  I think we all ask these questions. For many, that is where their journey with any kind of faith just ends. They realize there is no logic and find it cruel and hypocritical.  I totally understand that. In fact, I feel that.

Yet, I have faith.  Why?  That is the ineffable part! Did I get to that by going to church or to temple services?  Maybe.  Did I get there by reading sacred texts and really tryng to understand them in their historical context and source langauges? Somewhat.  As I have said here before, music,  choral, classical, oratorio: That too.  I think if I tell the truth I got there through all of those things and a few others and just a bone deep conviction.   I can say I was “strangely warmed” like John Wesley described, at a very early age.  Let me back over that one.

John Wesley, and his brother, Charles, were 18th century Anglican priests. They were also PKs (their father was a minister as well).  While studying for their orders at Oxford, both brothers were struck by the corruption and insincerity of their fellow priests in training, the Anglican church as a whole and not surprisingly, they wanted to do better.  They never intended to create an entirely different denomination of Christianity, but that is their legacy.  At Oxford they formed an accountability group where they would check in with one another, and other like minded students, as to how they were living their devout Christian lives.   Because of this serious mindedness they were labeled as “Methodists” by their fellow students.  (Please excuse this very boiled down history of people I find were fascinating and the movement they started is also fascinating).  At any rate, after a two year appointment to a parish across the pond in Savannah, Georgia, John Wesley returned to London and began attending prayer meetings with Moravian Christians. It was during one of these meetings that he reported being, “strangely warmed.” In other words, he felt touched by the Almighty, Jesus, God, Yaweh etc., in his heart.  Or, in a more humorous version; he wet his pants:).

So all of that possibly boring history of the foundation of the Methodist church is my way of explaining that I have felt “strangely warmed” on numerous occasions. Does that just mean I am impressionable?  Or, do I have an over active imagination? For the completely logical and cynical, that would appear to be the case. Also, please don’t forget where we started this whole thing: Why do bad things happen to good people?

For me, the sense I have had that there is definitely a presence that is greater than me does not preclude the fact that, well, shit happens. I may find it depressing and be angered by it and ask why, but I don’t believe there is some sort of bad intent on the part of the Diety.  We are not immune from the shit life throws our way just because we believe.  I also don’t believe that bad things happen ‘for a reason.’ That is crappy theology. Bad things just happen because we are imperfect beings who are learning and don’t always get it right.  We are in that sense, children, or sheep.  Do you know how dumb sheep are?  I do.  I have hung out with sheep, I know sheep and they know me, and let me tell you, it is no compliment that we are compared to them multiple times in the primary text for all three Abrahamic religions: Islam, Judaism and Christianity.  In fact, it is downright rude.

Baaaahhh.

Have I made any sense here?

I am trying to say that G-d does not cause us pain and suffering and G-d can’t stop our pain and suffering.  I know that is bad news.  However, I think G-d can make it more understandable.  We can find meaning in the shittiest of things when we know that despite it all, we are still on G-d’ s prayer list!

We are still loved and we can still experience divine love directly through the love of those who care for us and reach out to us in the worst of circumstances.  In fact, I believe that is our duty, our reason for being.  As a Jew, I am commanded by my Covenant with the Almighty to reach out and lift up my fellow human beings, no matter who they are.  I am not supposed to discriminate on the basis of ANYTHING.  I like that approach.  It is a bit overwhelming but I get it.

There is work to be done and that work always takes us beyond ourselves and our own fears and pain and sadness.  There is no better exlixir than to look at our fellow humans and see them as thet are, as we all are: children of the same Creator, and deserving of the unconditional love we receive from the Creator.

I know that sometimes this doesn’t work too well.  All we can do is try.  And, all we can do is look for those opportunities to be “strangely warmed” when we need it most.

 

Life is more and more on fast forward as we age.

It is all around us and in us and spins faster and faster.

It swirls in us, around us and if necessary, without us.

I am always running to catch it up.

I am not wearing the right shoes.

I am breathless.

Why is this happening?

Isn’t there some sort of ‘it gets easier’ clause in the contract of life?

Right, no.

I know the answer to that.

Climbing the hills gets a bit harder but I do know which hills are worth climbing and which just.. aren’t .  That, in itself, is a bit of comfort.

No guarantees. No safety nets.

There never were any.  Nothing changes.

But I am very thankful for the people running the race with me. If it weren’t for them I might have given up already.

Community,love, partnership, those are the things that boost my next spurt of energy.

Even when I can’t believe we turned a corner and we are back at the same exact spot.

Oh, and I can’t forget the Creator. She holds me up on her shoulders through it all.  I just forget to look down and see that I am not starting on the ground.

 

 

I thought it might be good to write about writing and how it parallels and mimics my life in general.

That’s it.

I said it might be good to write about but I have no idea how to proceed with that idea.

Here goes:  I have written poetry and short stories and academic papers and all kinds of things since I learned to write at the age of 6.  For me, writing is like an organic extension of my physical being, i.e. a third arm and an extra lobe in the brain. If I don’t exercise these parts of myself they atrophy and I can tell as it is happening.  I become scattered and unhappy.  I cry and stomp up and down and cannot collect my thoughts.  Most of the time when I write I don’t have any idea of what words will flow out, but, flow out they must.  Otherwise I suffer from a kind of feeling that I am incomplete. It is hard to explain.

I have wanted to publish a book since I was very young.  Actually, I often assumed I would be a writer who would live in a charming house in the country somewhere in New England with a large retriever dog and a professor husband who dresses in tweeds. I can say I got close to that.  My house is large, although it is in Texas, and my husband, who doesn’t wear tweeds, was a college professor of German until we both realized he really needed a salary.  Thanks be to God he found software early on!

Frankly, a lot of my dreams have come true due to my own bull headedness and my husband’s.  We are both very demanding of ourselves and in some ways, of others.  We raised two beautiful children who have defied the odds and both gotten educated and then found spouses we heartily approve of before 30.  (We didn’t expect that, by the way.)  Oh, and these things didn’t just happen due to our own agency.  At least that is what I believe.

In fact, we live in our big house, with our big yard, with too many animals and are as close to our children as we can be without interfering in their lives.  So, where does all of this lead me?  I said I was testing something.  What?  I am testing my own mind.  There have been times in the last dozen years where I have felt that my mind and the words that I write were all I had left.

I suppose that is as good a lead in to what I want to say as any.  I wish and hope that everyone who reads this, will also read the book. I am very close to finished.  It will be published to Amazon. That way people can access it in whatever form they like.   Of course I want to publish hard and soft copies and market it myself but that is an expensive proposition and I am not too sure it is worth it.  I think we will see how we do with this first method to get it out there and go from that.  If anyone who reads this has expertise they want to share with me about any of this, please feel free to tell me!

The process of editing, cutting and reshaping work I did years ago, especially when I was at my very worst, has been difficult.  It has also been inspiring at times. I read myself and think, “how did you keep your head up?” I really don’t know.  But being immersed in my own writing has taught me one big lesson: I can always live to fight another day, even if the day I am in looks hopeless. I have pushed through some pretty shitty days and I’m still here.  That in itself is a form of encouragement and underpins my faith.

Now that both of my children are married, I have been taking stock of how I want to live the rest of my life. There are days when I have lots and lots of things I want to do and days when I just crawl around.  Soemtimes it feels as though there is nothing in between.  I often wonder when the other shoe will drop.  Or to be more plain, when one of my weird diseases will take over again and have its way with me.  To be honest, that is a huge worry.  I try as hard as I can to just live my life one day at a time.  I have learned from experience that there isn’t much more any of us can do.  I often notice my children and others who are younger than my wise age of 57, that live as I used to, wildly punching forward and intensely focused on the next great thing they can do.  I used to be like that.  These days I am resigned to the fact that we just don’t know what’s next.

I don’t necessarily see my current sense of the temporal nature of things as a bad thing.  I think it just comes with age and a whole lot of mileage.

So, what am I testing and what is next?

A lot of stuff to be honest.  Today is the first night of Hanukkah and I invited the whole family over.  I am starting to realize that putting on big dinners is harder than it used to be.  If I didn’t have a really nice husband, I couldn’t do it anymore.  However, I am glad we can do it.  Today is also my dad’s birthday.  He would be 92.  Is it crazy to keep counting the birthdays of someone you lost 28 years ago?  I just never forget.  He is always close.

I am trying to focus on the things that nourish my soul. I have started taking voice lessons aagain and that has just been wonderful.  I walk my little dog a lot and listen to either choral  music or sometimes hard rock:). I also love listening to podcasts in German because it keeps me bilingual.

The little things that feed the soul are important.

As to my book, which is based on several years of this blog, I can’t state how important it is to me.  It has been a very steep learning curve.  But, I would not trade it for all the tea in my pantry.

I am going to end this here.  It is Jan. 4, 2023 and I just need to post it. I will send out something else soon!

It’s not what you think based on the last two entries.

Our son and his lovely wife got married here, in our backyard.  That is done.

It has taken me a week to unwind and recover.  I am just now returning to myself.  I had no idea how I would do energy wise.  I tried to conserve energy in the week before but I have figured out that there is more than one type of energy and they both seem to drain my battery these days.

You know what I mean about nervous energy?  The kind that makes you extra productive? The kind that that you count on before a big move or a trip or a big deal at work is due?  I use to have that and it was great.  I could pour on the steam and get whatever it was done and then bask in the glow of it afterward.

I don’t get the whole glow thing anymore.  I miss that.  I get more of a need to lie flat and hurt all over kind of thing.  It’s frustrating.  I miss the other me.  I was literally a mess and a bitch last week.  However, if I start at the actual day of the wedding and move forward there was some humor to my fatigue.

My dad, Harold, was a sort of bumbling figure.  I take after him in more than just in  looks.  On the day of the wedding I was tired.  We had stayed up pretty late the night before at the rehearsal just decorating and imbibing.  I don’t imbibe. I mean I haven’t in years.  I did do a bit of it that night and it hit me like a ton of bricks.  I lost motor control and went to bed.  The day of the wedding, as I said, I was tired and there were endless things to worry about and to try and get done.

One of the last things I had decided to fiddle with before I started to get my bath and get ready for the wedding was to string some fairy lights along the rail of the deck that leads down from the steps, right in the middle.  Everyone would be processing from there so I thought it might be nice.  I don’t know what exactly I was doing but I guess I was leaning and I lost my footing.  I tumbled down the stairs in slow motion and landed on the bricks below. I tried to break my fall but was only moderately successful.  I sat there on the bricks and howled.

My husband came out and asked if I was broken.  I really wasn’t sure at first.  I was pretty shaken.  So, I went inside and took something for pain and had a glass of water.  I have never had a bigger egg shaped hematoma and bruise injury in my life! The worst one was on my left leg, where I fell.  It hurt, badly, but I was able to deal with it so I just made do.  As of now, ten days later, it is still a bump, and I have the nastiest bruise I have ever seen, but that’s fine.  I am just a klutz.

So fatigue continued through the week at really took me down, down, down to a literally shitty level.  We animal sat for the new couple whilst they were honeymooning.  They have two birds and a chiweenie puppy named Bean.  Bean is a sweetheart but unfortunately, for her ad for us, she went into heat.  The plan had been to have her spayed before this happened but it sort of snuck up on us.  So my husband and I had never experienced the joys of a bleeding puppy dog.  OY.

The first night we had her, Sunday I guess,it started and we were too stupid to figure it out.  We thought I must have been scratching my weird rash and caused some blood on the bed sheets.  It took another 24 hours and a whole ton of higher education for us to discover where it was really coming from.  We were so dumb! It took another whole day for us to figure out the best way to deal with it.

On Wednesday I did my immune infusion after I got done working. And, because I was fatigued and forgot to premedicate properly, I had horrible side effects.  I was itching like mad and had a headache all night long.  I finally gave up on sleep and went downstairs to stare at the television and mindlessly eat.  I did not turn on the light in the living room.  I just curled up on the couch with my dogs and my food.  Yeah, well, I was eating jam with multiple berries and it looked like a berry had fallen onto a couch pillow.  I picked it up and jammed it into my mouth like the zombie I was.  IT WAS NOT A BERRY.  It was a poop from the dog’s diaper.

I ran to the sink and spat it out and starting rinsing my mouth with hot water and detergent.  OMG I was so freaked out.  I was also laughing at myself.  What a loser!  Only a true idiot could eat dog shit and mistake it for food in the middle of a bad night.  Then I cleaned the poor puppy up.  She had asked to go out and I had not paid attention.  You have to take the diaper off and take her out and then put it back on.  I had been too dopey to follow through: my fault entirely!

So, that was my shitty story.

Hello Fantastic Readers:

I have written a book based very closely on this blog.  I am getting very close to publishing it on Kindle.  I would also like to promote it anywhere they will let me in! Please, if you enjoy my writing, tell others you think might also enjoy it.

I will keep you updated right here and on my Facebook page as well as dip my toes into other social media waters.

Stay tuned, please!

Thank you!

I feel like one of those Flat Stanleys today.  Do you know what I am talking about?  I don’t know if they are popular anymore but when my kids were in elementary school the whole class would make a paper doll called Flat Stanley and they would mail it all over the world and get it stamped with all kinds of stamps and sometimes, because this was a popular thing, they would get back pictures of the doll in foreign places and with all kinds of people.  Basically, it was a type of geography lesson and a lesson in how to connect with people outside of their own communities.

It was a cute lesson but I always thought that Flat Stanley must have felt weird, you know,  seeing as he was one dimensional.  I mean what sort of things could he talk about in all of those foreign places where he traveled?  He probably wasn’t very interesting. I imagine him saying, “What time is it here? This is pleasant. My name is Stanley, and how’s the weather?” That would be his entire repertoire. If he could say much more or knew facts or was a great learner he would no longer be flat.  He would have to take up more space.

That’s how I feel: flat and not very interesting, like I shouldn’t take up too much space.  I try my best to do things I think will benefit my family only to be told I am way off base.  It isn’t fun. I spend a lot of time, the majority of it, alone these days.  I am getting used to it.  But really, I am a social person.  Between Covid (yes, it’s still around!) traffic, fatigue and whatever else, being social has never been the same since March of 2019, for anyone, I think. I know from talking to others that I am not the only person who feels isolated these days.

But back to the feeling of being flat.  I have arrived at an age and position in life where due to my health I can’t work more than 15 or so hours a week.  My husband works from home and my children, although I hear from them often, are just not children anymore.  I really don’t know where I fit in.   I have been trying to discover that answer for the past year or so.

I assign myself jobs, both big and small.  I am working  very hard on making my goal to publish a book a reality.  I also work really hard to be physically fit.  I like to cook so I do that.  But I think where I get snagged is when I expect or try to lean on those around me for praise or for much of anything at all.  I realize that I need to be my own cheering section.  I was the cheerleading section for the whole family so that makes sense.  I mean, this should not come as a surprise. But it seems like it should cut both ways and it just doesn’t.  I think being stuck behind the jailer bars of Covid for so long has exascerbated all of this. Those in my family who are introverts by nature have thrived in this new enviroment.  But people like me, extroverts, especially ones with fragile immune systems, have really suffered.

I know everyone deals with some level of this.  I just always feel like I went from being a vibrant person who was neccesary to people’s lives, to some sort of Albatross hung about their necks. It seems like the dividing line was pre and post being really sick.  It’s like I have gained some equalibrium with my health but those I let down aren’t going to come back or reintegrate with me the way they did before I was sick. I may be wrong.  I don’t know.

Now that I think about it maybe being flat would be cool.  You could fit in all kinds of spaces.  Think of it!  You wouldn’t really have to wait in line for the ladies restroom.  You could just sort of slither in and no one would notice you.  Of course someone might sit on you so that is not a nice image.  But you could easily hitch a ride on a plane, train, car and go where you wanted.  You wouldn’t require much in the way of food.  Naturally you want to stay flat. Or does Flat Stanley have anorexia?  Oh dear.  That’s serious.  Maybe Flat Stanley should be moderately thick Stanley.  I am taking this way too far.

I am going to endeavor to not feel like Flat Stanley.  I don’t want to be one dimensional.  Even if no one else can see the dimensions or even cares that they are there I plan to keep flaunting them. If I get my feelings hurt because no one notices or seems to care one way or the other, I must validate myself.  After all, I have never been flat and I don’t think I ever will be. I am OK with being moderately think Katie.

Move over Flat Stanley, or I’ll step on you as I run enthusiastically towards the next thing no one but me cares about!

 

 

 

I have not been writing regularly because I have been in the throws of the third edit of my book.  I have been learning a great deal through this process.  However, something happened that I feel like I have to write down in order to process it properly, so I figured I would share it here.

My spoose and I spent last week in one of our favorite places: Angel Fire, New Mexico.  It was our first trip up there without kids in over 25 years.  It was a great break from the brutal heat here in Texas and a lovely change of pace.  Poor spoose had to work every morning but it was fine.  We did the same thing we did during our week off at the beginning of the summer at the beach and chose an activity we wanted to do.  The activity came down to a choice between horse back riding or white water rafting in the Rio Grande between Taos and Santa Fe.  Of course, I love horses and horse back riding.  But, I was trying to step out of the box and challenge myself so I agreed to the rafting.

We had gone rafting one other time with the kids and it had been on a fairly easy stretch of the river.  I knew this trip would be a little more difficult but when I asked the lady on the phone exactly ‘how’ difficult she pointed out that they take children as young as 5 and that the rapids only go up to a grade 3 out of 7.  So, I decided to try and swallow the lump in my throat and go for it.

We got to the place and were fitted for the proper gear: life vests and helmets.  After that we were lectured to on the proper way to save yourself if you fall out and how to save others.  This made me a tad nervous but I figured it was just a precaution.  The guides kept saying that the recent rains had made the river run higher and that this actually made rafting a bit easier so probably no one would fall out.

We were assigned to groups of four people per one raft and one guide.  Our raft was the two of us and a newy married couple in their early forties and our guide who was a small, 90 lbs wet, young lady from New York City.  So we took off and she told us all of the basic commands for how to row together and so forth.  The first few rapids went OK.  I thought it was fine and maybe we were all getting the hang of it.  The guide mentioned we would be going through a total of 10 rapids of varying difficulty and I sort of shuddered internally but decided to hunker down and not count them but just take it one minute at a time.

Then it happened:  We got wedged between another raft and a large boulder as we were going through one of the rapids.  Our raft went up on its side and three of the four of us fell out.  My husband and the guide were the only ones who stayed in.  It was shocking and I took on a lot of water but I grabbed onto the outer line of the raft as I had been told and I was pulled back in like a large land mammal.  At first I was panting and shaking so hard I couldn’t imagine sitting up again so we headed for a little side beach.  It was there that I got straightened out and back in position.  I asked the guide how many more rapids there would be and what was the serverity and she said, “I think that was the longest and worst one. The rest will be smaller but some will be rough.” Well, what choice did I have?  I nodded and we took off again.

So, I thought we were all good.  Then, it happened again and it was worse.  This time one whole half of the boat went vertical, my half of the boat! The other man and I fell back in.  I got sucked down between some rocks and luckily remembered years of swimming lessons and lifeguard training.  Well, ulitimately I heard my dad’s voice saying, “don’t fight it, you will pop back up to the suface.” So, I did pop up.  But, I got sucked right back down and tossed down several rocks. My head snapped back and I felt like I was being tumbled.  I tried to right myself by putting my legs downstream but it was too strong.  However, when I popped back up I swam, really hard, against the current.  The guide was quite a distance from me and hollered “swim to us!”  I was definitely not going to do that!  I would have to cross the worst of the rapids again.  I swam to a rock and hung on for dear life.  Another raft came up on the other side of the rock and told me to swim to them.  I really didn’t want to lose my hold on that rock but I did it.  I almost missed it but they caught me with a paddle and a man started to drag me in.  I laid on the floor of that raft shaking and gasping and saying, “I’m done. I am fucking done.”

This time we went to a beach area to put me into my own raft and the guides were all concerned I did not want to go anymore and was I broken anywhere.  I told them I didn’t know yet what was broken and what was just bruised.  I stood there shaking like a leaf and realized I would screw things up for everyone if I made them go get the bus for me and whatever.  I just said, “Tell me that was the worst of the rapids, please.”  They assured me that the rest of it was nothing compared to that and that I didn’t have to paddle anymore, I could just lean in all I wanted to.  So, I did.  I got back into the damned raft and hung on like a tick on a dog.

I realize that if I was twenty years younger that would have been a fun escapade.  But for me, at this point in my life, it was NOT FUN.  I am bruised as if I was in a car wreck.  I sucked down a lot of river water and that sort of thing often causes me to become infected.  So far, I think I have excaped that.  My husband kept saying how well I had done and the guides kept coming up and thanking me for being “so tough” and “hanging in.” I really don’t know what they thought I would do.  I have no intention of ever putting myself in that sort of situation again.  At first, I thought it was my fault for falling out.  It was only later, after my husband explained it to me, that I really computed that there was no way for me to hang on and not go in.

The rest of that day and the entire night after the whole incident I couldn’t sleep.  I was just shaken.  I kept thinking that if things had gone just a little differently, I would be dead.  I think I have used about three of my nine lives now.  At least I hope I get nine of them!

I don’t know what to think now.  Am I over dramatizing the whole thing?  I mean maybe it just felt more dramatic that it was.  I don’t know.  I go between being embarassed and being angry that our guide put us in that situation twice.  All I know is that I am grateful I didn’t end up in the hospital or worse.  I think my years of activity of that kind are behind me now.  I  realize I have been fighting my age and that this may be the source of my discomfort here.  I don’t like aging at all.  I thought I would be graceful about it but I am most definitely not! The lines around my mouth are making me look like I have jowls.  My neck is wrinkly.  I quit coloring my hair and it is salt and pepper looking… mainly salt.

How much of this are we supposed to put up with?

I want to fix it all!

However, I don’t think fixing it is really the point.  I think I am supposed to lean into it.  I am supposed to accept the fact that with age comes wisdom and  all that crap.  Yep, it’s crap.  I don’t like it.  My mother never liked it either.  I notice  that my sister, who is my senior by 18 years, is breaking some of her own vows.  She swore she wouldn’t undergo any proceedures but she has.  Hey she has the money, so why not?

I am devolving here.  I just want to say that I was frightened down to my core and it was a different kind of frightened than I have experienced in many, many years.  I guess you could say it sobered me up. I am not the girl who would go do these things, fall off the boat and just dust it off. That is all over now.  I am the girl who keeps swimming and exercising so she can haul herself back upstream and save herself but there is no fun in it anymore.  It is a chore.

But all taken together, I have found other things that grab my attention.  I can look out the window of the car at the passing scenery for a long time and occupy myself with my own thoughts.  That is a fairly new skill for me.  I can be quiet and alone and okay with that, and that is new for me as well.  So, change is a trade off I suppose.  I just need to remember that I don’t have to love the wrinkles and jowls and whatever.  And, if I can fix them, I most certainly will!