This is a Test

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 is done.

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.

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Kinda Flat

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!




Rough Waters

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!







Grateful to have Covid?



OK: I obtained the antiviral, Paxlovid, quickly and felt bad for most of this past week.  Today is day zero as in I was exposed a week ago today.  I feel quite a bit better today.  I can’t believe I caught it from a doctor I invited to my house.  Irony is pretty much a bitch but she has a sense of humor!

I cannot say how thankful I am that I got this virus at this point.  I am four time vaccinated.  I got the antiviral medication.  The virus has become much less potent and we know much more about it.  I was still a bit nervous but nothing like the gripping fear that would have been the case even a year or a year and a half ago.

Did I want to get Covid?  Hell, no but I think it is almost inevitable at this point and thank goodness it is the summer and I am not working and it is all OK.

So, on that note I will shut up about Covid.

I do have something else on my mind but I will only mention in passing because it only pertains to this blog in the sense of mental health.  I think it is a drag not just on my mental health but on everyone’s at the moment.

Our state, Texas, is in the hands of facist meglomaniacs that wish to take away the rights of anyone who is not male, white, straight and wealthy.  These people have tentacles everywhere and have made inroads all the way to the Supreme Court, the Congress and the previous presidential travesty of an administration.  Things are getting scary and tense here.  Individual rights are being taken away, beginning with a woman’s right to choose.  Many young people no longer feel safe having children in this state. This is tragic and a brain drain on the state.

My family is directly effected and I am very down about all of this.  I am having a hard time pushing forward knowing things will most likely keep getting worse. I like to think hopefully but my husband keeps telling me the dye is cast and our federal gov’t will not hold together as a strong union much longer. Our country will split into red and blue states.  I think he is right.  Where to live? What does it mean?

I don’t know but I am searching for answers and I really wish I didn’t have the whole chronic health and doctors and specialists, etc, to factor in.  If anyone wants to comment on this… please do!




Something Profound, Or Possibly Just Bragging

This past week and a half have seen some dramatic news and quite a bit of work and excitement on the part of this chronic person.  I even had some Deep Thoughts. (Does anyone remember the Deep Thoughts skit on Saturday Night Live? I am probably aging myself again.)

Let’s see here:  Big news would be that my husband was offered a new gig with a new company, which is incredibly relieving to both of us.  For the last  14 months he has been on call 24/7 with no break and no extra compensation for completely cleaning up the mess of an entire department that had been previously ignored and mismananged.  He finally had to say he was done.  He has worked with the same group/company for seven years and loves the people.  Unfortunately, they were purchased by a fortune 500 company a little over a year ago and the job he was doing was basically no longer needed because the bigwigs didn’t see the importance in continuing process improvements.  He took his current job to just be a good guy with the idea he could work his way back out of it.  Getting out of that job or even getting a pay raise is no longer an option due to big company plans and politics. It is time to move on.  It has been an arduous process.

My daughter, who received a Master’s degree in her academic field of History last spring, has been searching for a job in something that would keep her connected to the University world but not force her to run out and get a Phd that would then force her into a publish or perish position.  She did it! She will be working for the Graduate School at her former University in the role of a grant specialist who works with mainly faculty grant applications but some graduate student applications as well.  I am so proud of her!

My son, too, has found a new job where he will be a team lead, and he is just one year out of technical school.  I am a proud mama!

I could go on… my neice is doing great at law school and my son in law is successful and my to-be daughter in law got promoted.  These kids are amazing.

What about me? Well, I have a harder time with singing my own praises:) I am taking the summer off, like I have mentioned, and plan to work on that, on me. I am bound and determined to finish my book and see it published this summer.  I am almost there. It is an arduous process for which I have had a lot of help.  I want to care for my house and get it ready for my son’s wedding in October.  The wedding will be very small and very low maitenance but still… I am having a wedding at my HOUSE!

I need to follow through on a few promises I have made to myself.  I have not been able to find a choir that is rehearsing at the moment and Covid is ever with us so I am going to go ahead with voice lessons.  I have some leads on that.  I think it is time to spend the money and just go for it. It means a great deal to me; heart and soul.

But mainly, I want to maintain a healthy relationship between myself and myself.  If that sounds weird, well, you should know me by now! In order to do this I have to be in open communication with my understanding of the Creator. How do I do that when I am really the kind of person that lives in her head most of the time?  Well, my spiritual mentor had some great ideas for that.  The one I have been using is the one I identified with and have clung onto the most readily.  It is the idea of visualizing getting direct  and  literal comfort from  God in the form of a touch or a hug. In other words, bringing God into the picture in a very personal way.

Many of us, whether we were raised in or out of a religious family, have a preconceived notion of God.  For Christians, the way to work this out  is often the familiarity of Jesus, who is believed to be both man and God, which is much more apprehendable than some big, celestial being floating around in the clouds and sitting on a throne. I don’t know about you guys but white dude with flowy beard and white robes sitting in judgement of all souls is something I find intimidating, and not the least bit warm and fuzzy.

Many years ago, I decided (after study) that my personal image of God was neither male or female, nor human nor anthing apprehendable in particular.  God is the ineffable. God is a force that is within us all and without us all.  Basically we have to apply human logic and imagination to something that is way beyond what we can understand. So I decided the most loving thing I could think of, the thing that brought the most comfort to me, was the love of my parents.  (I say this with a giant disclaimer! I know that for many this image of parental love does NOT work.) So for me, God is the divine parent who wants what is best for me but realizes that I am going to make mistakes and that I am going to fall and get bruised by life.

So where am I going with this?  Why is this blog post so damned long?  Because I am explaining how I got to my image of God that I can go to for encouragement and love and understanding and not think of it as a no no.  When I visualize a love that I can go to for absolutely no judgement and no words said, just a place where I can go to the sit at the feet of someone, lay my head down and know I will be understood and my head will be patted and I will be loved completely, that would be my father.  I can merge my heavenly father and my father, Harold Kelfer, who has been in heaven since I was 28.  That bond has never weakened.  I still feel it.

So, I have been going there, in my heart and in my mind, to rest and to restore.  And you know what? It’s working.  We are so loved.  We just have to let ourselves be known and let down whatever barriers we have up. Let love do it’s work in you and soon healing can begin.  I am starting to see this.  Try it yourself.



New Focus

I  am looking forward to NOT trying to do so many things.  I hope this narrowing of scope will allow me to keep my self more at ease. Ease is good for a sick body and my body has been feeling unwell of late.  I don’t know where to begin with doctors to get things checked out or which part of me needs an overhaul so I just hang out and hope it will go away.

That may sound naive’ or stupid or like I am an ostrich, with her head buried deep in the sand.  I’m really not.  I am just badly burned by past experience.  I  can guess at it: “hmmm maybe this is rheumatological… I do have a low grade fever and my joints are hurting and I am really tired.” Or I might think a few more minutes and tell myself, “yeah, but my stomach seems upset all of the time so it could be a pancreas thing.”

The real point is that I don’t know.  If I start going to doctors and taking new pills it is like pulling one string in a ball of yarn.  It probably won’t unravel things, but it will just make more knots and each new knot will require more treatments and then the whole merry go ’round of doctors and symptoms could just get started again.

I really do have PTSD from the bad years of all of this.  I would rather accept a slightly lower quality of life than one that requires me to take any more weekly and daily treatments than I already do.

This probably isn’t rational.  But, I can’t help it.

I look things up on google like any idiot can and I see the life expectancy for people with even one of my diseases and wonder why the hell am I still here?  If I go poking any of the sleeping monsters that live inside me, will they wake up and carry me off?

I guess I am scared.

I know for a fact though, that after I feel bad for a while, I get to a point where between the aches and the fatigue and the other symptoms, I just want a solution.  So, I start digging.

I started digging this week.  On Monday I had to see a neurologist and I didn’t like it because she wants me back in two weeks for some mysterious testing and said it will be good if all I have is carpal tunnel.

I am getting tested for a big time UTI but no results yet.

I just left a message with rheumatology that I think I need bloodwork.  I have not woken up feeling well a single day this week.  It has been a struggle every single day.  It makes moving forward with anything difficult.

I am a big bore to myself and others this way.

So, I decided to not take classes at the seminary for now. I can’t.  I am tapped out from work and I want to finish editing my book and enjoy what energy I do have.  It is dissapointing in a way but a relief in others.

I will not work this summer.

I should, but I need the time off.  I have to priorize my health.  That is the fact and  I can’t change it and I have decided to aknowledge reality rather than keep running and being dissapointed when things don’t work. This is what I mean by a new focus.

I am grateful for many, many things:

My country is not being blown apart by Russians.

My children are safe and healthy.

I don’t want for anything,

My insurance doesn’t want to fill my igg prescription because the generic version is cheaper.  My doctor doesn’t approve because I have so many reactions. She argued and appealed a few months ago and won.  Now, she is doing it again.  I just got a call saying the appeal was turned down, again.

How is this possible?  How can insurance dictate medication prescribed by a doctor?

I am grateful though that she fights on my behalf.  Also I will send a note to our national Immune Defense Fund.  They are fighting this sort of thing in Congress.   Crazy world….

Anyway, may we all focus on the things/people and places that make us whole.



How to do this Write

Well, readers, I have been on a learning curve.  It is steep, long and contains some pretty big switchbacks.  I am trying to learn about how to edit and publish a book.  I have a relatively easy time with some part of the process, i.e. I like to write and I don’t even mind the editing part too much. But the whole process of sending a book out for publication has grown quite complicated in the digital age.

There are at least 5 or 6 different ways to go about it and they all have pros and cons.  It is a bewildering forest where I cannot see the sky for all the trees. However, I do have some road maps.  I have an online aquaintance that has published 14 (soon more) books of fiction and she has written a great deal to me explaining all of the plusses and minuses of the  various ways to go about it.  So, I am going to go carefully down one road and see where it leads.  If it leads to a dead end, I will just try another.  I have to remember, there is no talking GPS here!

To that end and due to some other flashing red lights that I will talk about in a minute, I am going to take the summer off of work again.  I feel like my body, soul, and mind are all screaming at me to slow down.  I find that screaming really annoying so I have been telling it to shut the heck up for several months now.  I mean, come on!  I work half time FROM HOME.  How difficult can it be?  My children are grown.  I should have all the time in the world, right?

Yeah, no:  It doesn’t work that way.  It would seem that chronic fatigue is alive and well in my mixed up connective tissue/lupus addled, primary immune challenged body.  I really, really find the more I fight it out with myself the worse it becomes.  Intellectually I know this.  I have certainly heard it often from my loved ones.  But there are some voices in my head that say differently, ” Katie, if you give in, you won’t get anything done, ever.  Your life will dwindle into nothing but that of a sad couch potato.  DID YOU HEAR ME? GET UP AND MOVE, BITCH!”

Yep.  That’s kinda what I hear.  And I don’t just hear that voice; I have deep and solemn respect for it because part of it seems true.  I lost so much time being sick for years that I cannot get back that I am determined not to have that happen again.  I always have a nagging sense that I am operating on extra time. So, maybe that is natural considering where I have been.  But when I stop and examine what I really want from life, you know, bucket list items, being an online tutor that doesn’t make much difference in the household budget really isn’t high on the list.

My pride is getting in the way here. I had planned to be in a different place at this point in my career and life.  I had hoped to be a financial contributor of substance.  I studied hard and worked hard to learn skills that I knew would never make me rich, but would, I hoped, pay for a few things.  That just didn’t happen.

However, what did happen is that my husband and partner of 36 years made some good choices and those choices have led him to making a really good income that has allowed us to lean heavily on his work, and him, to bring home the bacon.  For this, I am eternally grateful

And now I am going to wander off on a tanget so you are forewarned: TANGENT AHEAD: SELECT ALTERNATE ROUTE IF YOU WISH TO GO AROUND.

Covid these days is really frustrating if you are in my situation, or if you are elderly or  have a tiny child, etc.  Case counts are dropping, which is wonderful, yet some of us  still have to be cautious despite our vaccination status.  We cannot relax as those around us have.  Over two years into this pandemic and I personally feel like I have been left behind.  I don’t want to tell people, “You can’t come over because I don’t know if you have it. ” Instead, I watch others resume all activities, such as eating inside restaurants , when it is a risk for someone like me.  I am sick and tired of this too! Yet, I understand that no one should have to stand still and alter their lives to protect me at this point: except my husband, who does and for that I love him unreservedly.  Life has to go on.  I just don’t want to miss it!

OK. I am done with my tangent.

Moving on, I realize that getting something published is pretty important to me.  I AM going to make it happen.  I am going to take the summer off of work and not feel at all guilty about it.  I will get my writing out there, birth it, and see what happens.  I will start the journey towards becoming a Spiritual Director, as I have mentioned before, and see where that leads.

I don’t picture myself as a full time writer.  I also don’t picture myself as a full time Spiritual Director.  I don’t know that I can do anything full time or even part time, based on my current work experience.  The only full time thing I can do consistenly is work on myself.  I have to get to doctor’s appointments, take zillions of meds and be nice to myself.

I guess that’s not so bad, really.

It is all in the way you view each day, right?



I Think I Can….

I have been trying to write a new post for a couple of months now.  For some reason, nothing I have written has really come together.  This little entry will be different.  I will just write until I am done and post it regardless of its quality:).

The holidays were really busy for us.  It has been a busy and exciting year.  First, hanukkah came early, right on the heels of Thanksgiving.  We invited our friends from Houston to come and share the final night of the festival of lights with us and I cooked a large meal.  It was very nice.  My latke-making, non-Jewish husband had a rough time this year and we ended up just having a single latke per person.  That was fine though because everything else went really well.

Next, I swung into action to get ready to take Christmakkuh on the road.  Our daughter’s new in-laws were coming from Brazil and we took the Austin based branch of the family to Colorado Springs to meet them.  Our little SUV was heavily laden with four adults, one chihuahua and lots of presents and cold weather clothes.  It was a very nice trip and we enjoyed meeting the Silva branch of the family immensely.  Now I want to go to Brazil!

Now, it is back to reality.  I am back at work and trying to tame the semester.  I have more to do than previous semesters, which is fine, really.  I just get frustrated at my body’s lack of cooperation.  For a job where I sit down in my own house you would think I wouldn’t get so tired, but I do.  For some reason I am still struggling with sleep deprivation.  When I don’t sleep everything seems to spiral out of control.

Monday, (non work day) I had a check in with my pain doctor.  He is very well educated and widely read as a doctor and I am grateful to him in many ways.  He helped me get off of the drugs that were cross listed and making me a zombie several years ago.  (Well, actually I took myself off of them after he explained to me what was happening.)  In any case, my appointment with him Monday reminded me yet again that many doctors, and many men, who are also doctors, don’t have any idea how to speak to women.  He was horrible.  He didn’t ask; he TOLD me I was going to try a new medication that would magically solve all of my problems.  It is not FDA approved (which is OK, in and of itself) and that there was no way to find a dosage for me other than just to take it and have someone near me in case it goes badly.  He spoke down to me and interrupted me.  He told me that I am, “a bundle of nerves and too freaked out to talk to him.”  I pointed out that I have no problem talking to people but that I have PTSD with doctors.  He promptly said, “this drug will fix that.” When I  tried to ask him about my sleep issues he said, “you should not even be talking to me about that.  It isn’t your concern.”

WTF?  It most certainly is my concern!

I am at a crossroads here.  I don’t think I can change doctors within this practice.  I also have another doctor in another specialty in this same practice who I really like so I don’t want to jeapordize that.  I guess I will just try to avoid him and see his PA when possible.

What an asshole.  I will try his miracle medicine and see what happens,  I am certainly not scared to try something new.

But, it is so ironic because the only prescription pain medication I have anymore is non addictive and it really does not work.  I rarely take it.  I have gotten used to pain.  It has to be pretty bad for me to reach for something.  I just don’t want to go down that road. As far as going to a hospital goes: forget it!

I really want to wrap up this long winded entry.  In an hour I have a televisit with my rheumatologist.  I have a few questions for him but nothing earth shattering will happen.  He always treats me as an intelligent person, which is refreshing!  I plan to ask his opinion about this “miracle drug” that has been recommended to me.  I certainly got the feeling that Dr. Demanding was not taking the whole picture of my health into account when he decided I should jump onto his latest band wagon.

We’ll see.  I find this dr. very reasonable.  Besides, he really IS a doctor on tv.

No joke, he is on a commercial.

Well, I didn’t promise you a rose garden, did I?  Nope, just a long winded non sensical blog.  I can think of so many other topics to cover but for now I will wish all of you well.  Stay healthy! Stay sane!

And just say no to Assholes!