Scenes from the Immune System Wars

My lupusy shite has been flaring a lot.  It comes at me in waves of nasty rashes and joint pain and fatigue.  Let me tell you, it ain’t fun. I never know what causes it.  Is it my fault for over doing it or is it X, Y, or Z?

I never know why it is happening  but in any case I always try to just make do with it.  The last thing I want to do is go on more medication.  In fact, my goal in the last year has been to get off of as much medication as possible.  However, the only medical intervention for these flares is prednisone, i.e.  cortisone, which is not my friend.  I have been taking minimal amounts of it trying to get over these flares but it isn’t working anymore.  I had to go in to the doctor for a big injection.  That was ugly.  I couldn’t sleep for a few days and I was a basket case of emotions… (more than usual!).

So I have been discussing with my rheumatologist what to do.  For a long time, with other rheumy’s I have had, I was told there were no further options to try.  Between my primary immune disease and autoimmune disease, it was too dangerous.  Or, I had doctors who simply did not believe there was really anything wrong with me and I was crazy: loved those docs:(

This doctor and his partner have  been wonderful.  They know their stuff.  So, a couple of months ago we tried a new medication in addition to the plaquenil I always take.  It was Immuran, which is sort of an entry level drug and most people do great with it: Not Me!  I had an immediate reaction.  I was very dissapointed.

I waited a while to talk to the doctor and was hoping that the whole thing would just go away.  Of course it didn’t so I finally called him and we met.  He said it was time to try Methotrexate.  That would have probably been just fine and I would have already started it but, Damn The Internet!

I read all of the interaction and reaction warnings on the drug and now I am scared to death.  Methotrexate is an entry level chemotherapy drug.  I am going to be open to infection and it may hurt my liver and cause my gut problems.  Those are two, no three, areas where I already have problems.  The dr. wants me to start taking folic acid daily while I am on the medication. I am guessing that will protect my liver.

But all the thoughts run through my  head: Is it worth it? Can’t I just remain like I am?  Surely being sore and tired and rashy a lot of the time are acceptable.  I mean, what if I have a serious reaction? What if this? What if that?

I don’t mean to diminish people’s fears but I have little patience for people that fear a reaction from a flu shot or even a Covid shot.  For goodness sakes’ people, it is proven effective! Basically those are as certain as they can be and side effects are minimal for 98% of people. Besides, when it comes to Covid, the results of getting the disease are far worse.  Good grief but I am grateful to be vaccinated finally.  (And no I am not a robot or a pedophile nor have I been chipped…. well, corn chipped maybe… they get me every time.)

Sorry, I got off track there.

It is the serious drugs that have started to scare me.  I used to be willing to pop anything in my mouth.  I was raised by people who saw modern medicine as a miracle and believed that there was a pill for everything.  I believed that too.

But, over the last ten years, well, I guess over the last seventeen, (since my CVID/ primary immune disease) was diagnosed, I have learned otherwise.  Medicines all have a cost.  They can produce a miracle and have in my life.  Without some of them I would be dead.  But, it is a very delicate balance and I really don’t think any one doctor or human of any kind can tell what the best balance is for me personally or for anyone else.

Our medical system is disjointed, as we all know.  We see a different doctor for each different ailment and they do not talk to one another.  There is no coordination.  In fact all the coordination falls to the sick person.  You have to keep your files together and your medications up to date and ask all of the right questions if you don’t want to get into trouble and get cross medicated.  I found that out the hard way.

So where does all of this leave me?

Yikes, I don’t know.  Kind of freaked out but needing to just take the plunge and see I guess. I have been very fortunate with my autoimmune side of things.  A lot has gone wrong but so far I still have my major systems functioning.  It could be a lot worse.

I guess I will go for it and see what happens.

I will let you know how this next new adventure goes.

 

 

You remember the saying, right? “Step on a crack and you’ll break your mother’s back.”

I guess one of my kids must have stepped on one.  I have had an increase in back pain over the last couple of months so I called the pain doctor to ask how to deal with it. The PA called back and said that after looking at my files I needed a CT of my spine.  The level of osteoporosis I have is simply going to cause breakdowns, she said.

It took a lot of shennanigans to get the CT done and to extract the results from the doctor’s office.  Apparently, the diagnosis was not a problem for them so they were not in any hurry to notify me.

When I finally spoke to someone I found out I have compression fracture in my L2, so very low down and just above the area I broke in 2016.  I was sort of surprised to hear I am walking around broken.

I was even more surprised to hear that the doctor’s office seem to think it was no biggie.  I was told more than once, “yeah well, it is just a chronic injury for you so you will just have to deal.”

At the moment we are on a much needed vacation and I am just ‘dealing’ with it.  I will go see the orthopedist when we get back home.  I realize there may be no real fix but I want to explore all of the options.  I am sure as hell not going to accept the situation as is without trying to make things better.

In one way it is just yet another thing to add to my list.  But it is also something I feel sort of resentful about.  I only have advanced osteoporosis because of the malabsorbtion issues I have thanks to my mostly dead pancreas.  Why does my back have to break too?

Now I am terrified of falling.

I don’t like feeling fragile.

I know I have mentioned that before.

I have become very driven about getting exercise and eating well in the last few years.  In fact, this year of the pandemic seems to have made all of the things I have wanted to put into practice finally gel.  I am exercising three or four times a week and I keep my diet pretty limited to things I know are good for me and just don’t eat anything else.

This has made me stronger, faster, leaner and improved my energy levels.

However there are still issues to contend with.

Like I have said before, there will always be issues and I have to accept them as part of the picture and keep moving. That is: I choose to keep moving. I choose to live my life and not cower in fear of the next break or the next flare or the next infection.  There is no point in that.

We just spent two blissful weeks on vacation.. just me and the hubs.  It was so awesome to be vaccinated and out and about in states like, New Mexico and Colorado that have actual laws about mask wearing and social distancing.  Gee, it was like being in a land of rational people:  Imagine that!

There was snow up in the Colorado mountains every day we were there but it was so pretty and blissful because we didn’t have to do anything:)

Vacations should be a right.  I realize I am lucky to take them.  I feel bad for people who don’t ever get to. Without those times and experiences I don’t think my mental health would be intact after the last year.  And after those two weeks of relaxation I became aware that a lot of my ‘issues’ with my day to day health fell away. This tells me what I already knew: Stress is the biggest bugabear in my life.  I think it is probably true of us all.

So how do we rid our lives of stress, or of dis-ease as one psychologist called it?

I haven’t the faintest.

You?

 

What funny little things we humans are.  So many of us thought 2021 would bring about a dramatically better year.  And, to be fair, some things are starting to slowly improve,

But just when you think it’s safe to go back in the water what should happen but… a week of total breakdown in our modern systems due to inclement weather in Texas.

This is our third day without running water and we are very lucky.  People across the state do not have power and we have had it this whole time.  The record breaking cold and snow and ice have completely frozen our poorly constructed infastructure.   We are trying to keep our heat turned down low and our lights off to preserve what energy we can for those in need across the grid.  My daughter, her boyfriend and my little, red golden retriever grand dog are all here too, stuck with us.

I feel like a useless appendage.  I have been tired and not much help with scraping ice and shoveling snow.  My bones are basically full of holes and I am afraid to fall down outside and snap myself in two.  I have been cooking as much as I can but today’s cooking adventure in peanut butter cookies was vetoed as a waste of energy.  Ok.  I guess not?

I just don’t have much to do because my work and everything else is canceled.

I have had a hard time concentrating on anything.  I guess it is because I have the more immediate concerns of getting the dogs out and collecting water from drippy faucets when I’m lucky, and boiling drinking water.

The above was written on snowpacalype day three.

Today is snowpacalypse day 4:

I am a little better today.  I mean my attitude is better, which helps. To be honest, after infusing my Igg on Tuesday, I didn’t sleep that night so yesterday was sort of awful.

Today is what it is.  I am trying to roll with it.  I am making 16 bean soup and Spanish rice.  If someone wants to grill fajita meat we can have that for dinner too.  We actually made it out of the house and went  the 1/2 mile to Costco and back.  It was pretty bare in there but I was glad to go.  It was probably not the best Covid decision but I was masked and didn’t stay long.

I am trying really hard NOT to think about how awful this is in terms of catastrophic failure of the electric and power grid in our state goes.  This whole week has been catastrophic and will still leave behind it a trail of dead people.  As if Covid hasn’t taken enough lives now more will die senselessly as a result of poor governing.  That makes me very angry.

This whole situation had made me reflect on the fact that I am more fragile than I would like to be.  I have to be extra careful not to fall on the ice because my bones are brittle.  The stress and the cold have made me  hurt worse and feel sick to my stomach.  I am not included and some of the outdoor plans and that really sucks.  I understand but I still feel isolated and yucky about it.

I want my old body back! It wasn’t all that great but I would give anything to walk back and re-do whatever it is I must have done wrong so I could not be sitting where I am now.

I am not feeling sorry for myself.  I promise.

I just want to know if there were time travel, could I fix this by somehow doing things better?

My dad always warned me to not follow in his footsteps.  He was sick a lot:   a heart attack at 42, emergency quadruple bypass at 54 and then dead of renal cancer at 66.  He always told me that I had to slow down and calm down and not care so darn much about everything.  He was worried I would get sick too.  I know that there is more to it than that but I wish I could have heeded his warning somehow.  I also hope I make it past 66, since he and my uncle both died at that age,(brothers).  My siblings have already outlived our sweet daddy.  I still miss him every day.

So, what has this to do with the snowpacalypse?

Much later date:

I don’t  think it had anything to do with the snowpacalype.  I think I was freaked out and stressed because we were in the middle of a natural disaster!

That is my prognosis and the truth.

Snowpacalype was a tough, tough week for us and the rest of Texas.  I am going to end this here: It was character building.

 

 

Today I want to write about something deeply personal.  (Oh yeah, I do that all the time:)

I want to think outloud about one of my biggest coping mechanisms in life and how it stretches its fingers across my world into other areas and how it is affected by our current world crisis.

I started singing in choir at age 7.  I was part of a successful church music program and I also had a great elementary music teacher.  Even before that, I had been chirping away to my family.  At get togethers I would beg for someone to let me sing, “Somewhere Over The Rainbow.”  There were a lot of Judy Garland fans in the family.  Unfortunately she died when I was four years old. This preoccupied and upset me as  a young child more than I think was normal.  I had been convinced we would meet and she would ask me to sing on stage with her.

Alas, I had to move on to other artists.  My next fixation was Karen Carpenter.  Just like Judy, I knew I could match my voice to hers.  Actually, I did match it except for the fact that I sounded like a child.  I memorized every quirk, every pause, every crescendo and decrescendo.  I also was learning to play the piano.

Fast forward to middle school and we had moved to a small school district in the country.  I sang my heart out.  I auditioned for every contest they had.  I didn’t always win but I sang anyway.

I joined the band in 8th grade and from there on through 12th grade I was in both band and choir and sometimes, drama.  Starting in my junior year in high school I began taking private voice lessons.  l was the main soloist at our small church and I sang all over the place for scholarship money to go to college.

College began and I was a music major, with voice as my primary instrument, but  against my father’s wishes.  He thought it was completely impractical and I would probably end up god knows where without a job.  He told me that getting a teaching certificate was not optional.  I wasn’t happy about that.  I had grander plans for myself.  The great opera houses and even Broadway twinkled in my plans.

At the end of my sophomore year I found myself transferred to a larger University, from UT San Antonio to UT Austin and very let down by the music department.  It was backbiting and mean.  I didn’t know if I could do it.  My parents made clear they were not going to support me in Austin in that degree. I was overwhelmed and didn’t know how I would ever get it done.  I lost my mojo.

So I became an English major with a history minor and the rest is.. you know.. history.   I started to acrue graduate degrees in other areas, but, I never stopped singing.

I found my way to University United Methodist Church at age 22.  They had an amazing music program that was more challenging than the choir I had left at UT.  It not only challenged me as a musician, it was a family.  I had come home. I even started taking vocal coaching again.  I thrived on that and could not imagine life without it.  In fact, it is there that I first knew that music and corporate (group) worship are the ways in which I connect to the Almighty.

I became friends with the conductor and his wife and family.  My world revolved around rehearsal and singing at services.

During that period I finished two degrees and started teaching English at the college level.  I enjoyed it but I felt a calling to be a spiritual leader.  It took a lot of time to decipher that call.  To be honest, I don’t think I have ever deciphered it.

I went to seminary and I joined another choir there. I was set on the path of becoming clergy and I did become that.  For the time I had my own church I was not just preacher and teacher but also the music maker.

When we left New Jersey and came back to Texas after four years, I decided to sing with my former director.  He was now divorced and with another church.  I went there and found a new choir family.  I continued to learn and to be challenged by singing his original music and standard oratorio repetoire.

After a stint with another local church choir I hit a big stopping point.  It was my health.  I know that any readers of this blog know what happened there.

Here I am a little over 10 years later.  My voice is a croak and listening to good choral music is almost painful.

I even found a new faith.  One that matches my identity and makes a great deal of sense to me.  I want to attend worship and learn the liturgy in the best way I know how: sing.

In fact when I look back I think it is pretty obvious what the ideal clergy type spot would have been for me: Rabbi Cantor.

When I sing beautiful music that praises the Creator, I feel that I am surrounded by the spirit and lifted to a place where contact with the Almighty is somehow more possible to apprehend.

For me, music does the same thing that I think meditation does for some.

I also feel similar about the prayer in corporate worship.  In a Jewish worship service there is a great deal of this and I find it hypnotising and comforting.  It takes me out of my everyday thinking and lets me empty my mind of its everyday junk.  Once it is empty, I can allow the Divine in and possibly, rarely, even hear what is being said.

So where does this leave me?

Frustrated.  I am frustrated.  I want to sing and I want to do it with others.  I may not be up to the fast pace of my former choirs.  I used to rehearse every week and sing every Sunday, sometimes at two services.  That is a lot of work.

That’s ok.  I will find the right rythm and the right place.

If nothing else this pandemic has taught me what I find vitally important.  I need to be around people.  I need to actively worship and I need to make music.  I don’t sound too great but I am anxious to take lessons again.  I don’t think it is hopeless, yet.

Maybe this time of being forced to live quietly and to look inward has been just the boot in the fanny I needed.

Please let me know how this works for you. Do you attend online services at your place of worship?  If so, does it satisfy the same  parts of you that worshipping in person does?

Are you a singer?  Have you always or often been part of a choir?  What do you think about the fact that we are living through a time when singing together can literally kill us?

What a strange thing.

It will be interesting to see what happens as we are freed from the grips of  enforced quarrantine.

All I can do for now is try to listen to the music I know and let myself be taken away as I glory in it.  I always imagine myself in the center of swirling sound.  In the center of the sound I can hear all the individual lines: the soprano, the oboe solo, the tenors, the first violin.  I hear them all separately but also all at once.  I guess it sounds corny and weird but it has always been like an arrow straight to my heart and then to my soul, if I let it.

I go for long periods of time where I don’t let myself immerse in that  direct channel, open  pathway, or whatever it is.  I don’t know why I resist it but I think it is  the same type of  human nature that makes any of us resist something we know is good for us, even if it reminds us of a painful separation.

What strange beasts we are.  Or, to be fair, I don’t know if anyone is as strange as me!  I am, without a doubt, a strange beast.

Okay, I think I am done.

This essay rambled on a bit but I have been trying to explain something that is inexplicable.

It is like the very nature of Adonai, something we can see every once in a while, but just a shadow in a darkened mirror that  appears much more clearly to me when I am making music with others and specifically in a worship setting.

I promise myself to stop being afraid of shadows and having  regret for things long past.  I want to open myself to what lies ahead.

I want to open myself to whatever G-d has in mind for me… if only I would stop and listen to the music.

 

 

 

I am of two minds just now… like many of us, I imagine.  I am so tired of being quarantined by this effing plague that I have started screaming at inantimate objects, but I am also trying each and every day to find a vaccine for myself.  Due to the ineptitude of our federal and state governments, I can’t find a vaccine anywhere.   Damn.  I just want enough immunity so I can be like the ‘normal’ people in the plague.  I will wear my mask, wash my hands and go out to more places than I have been to since last March.  Alas, I don’t know when that will be.

Whatever.  Yes, I am grumpy.  My lupus is in full swing and it is telling me to go to bed and die.  It hurts everywhere and I am fatigued most of the time.  But, I don’t listen to it anymore.  I started a new medication last week that lowers my immunity further (yeah!) but might make me feel better.  I have to try.  So far I have not felt any effects other than nausea and pains in my stomach.  But, my online tutoring gig started today so I am up and creeping along and trying to do what I can.  I am probably making things worse by over exercising whenever I feel a bit better.  I need the work out to dampen the depression.

I know there are others in much worse shape than me.  My heart constricts for the 330, 000 dead (just in this country!) and those they left behind.  And I pray for those that have the disease currently and are praying to just recover.  This monster is so big and we have had so few good weapons to fight it that it is just overwhelming.  I am praying and I am talking to a lot of good people trained to keep my mental  and spiritual health together.  I hope others are too.

I am angered beyond belief that my 21 year old son attends a state college where they refuse to comply with safety standards for Covid 19.  They risk his life, mine, and others  without asking.  I will make certain they hear from me on this matter.

And yet, I think we have a little reason for hope on the horizon.    Tomorrow Joe Biden and Kamala Harris will be sworn in to the offices of President and Vice President.  They have a plan to roll out the vaccines and help our economy and ramp up help to beleaguered hospitals.   I really hope they can get their work done and that all of the states comply.  There should be no such thing as a ‘red’ or ‘blue’ state at this moment in time.  There are states with PEOPLE in them.   These people are all of our loved ones, and they are us.  We have to stop this beast as soon as we can.  I feel like we have been fighting on so many fronts for so long that we have forgotten what ‘normal’ even looks like.

I am praying for all of us to join together and pray for forgiveness for our anger and hatred of one another’s views.  I pray for trust to replace mistrust.  I pray for health instead of death and sickness.  I pray for the men and women serving on the frontlines in the hospitals, many of whom have been ill and have died from their jobs.

Lord let us recover as a nation of people and help us move on.

 

Last Friday, just three short days ago, I had surgery on my right eye.  I really underappreciated how much it would hurt.  I am still glad I did it but the point is that I am appalled that when I had it done three years ago I was so out of it and sick that I really didn’t remember much of anything.

Let me back up  a bit and explain why I have had eye surgery in the first place.  I was born with a severe case of Amblyopia in my right eye and a severe case of Strabismus in the same eye.  In other words, my right eye has pretty horrid vision problems and it came  crossed. A siamese cat has nothing on me!

I remember that  as a small child that I would look at my nose and wonder if everyone could see their nose as clearly as I did.  I mean, my eye wandered towards my nose and it just seemed like my nose was in the way somehow.

My parents took me to our family ophthalmologist.  He was a very old man who treated my uncle with his eye issues.  He put a patch over my good eye and told my parents to take me home and make me use the bad eye so I could strengthen it.  That didn’t last very long.

I was all of two years old and I was constantly falling or running into things.  I am sure I was constantly screaming and crying in a very loud–two year old way.

My parents said it was impossible and that I would just have to use the one good eye and we needed to fix the Strabismus or cross eye part of it.  So, that began the cycle of surgeries to correct the cosmetic side of things.  Visually, I don’t think anyone really know or understands what I see.  For most of my life I have been declared blind in my right eye.

My parents decided to approach this from the standpoint that if we didn’t make a big deal about it I would not consider it a handicap.  Instead, they enrolled me in all kinds of of lessons that required the thing I just don’t have: hand eye coordination.  I am left eyed and right handed.  I do not fault them for this strategy though, in general it worked really well.  I never thought of myself as handicapped, just clumsy.

I have always liked being active but by the same token I have always stunk at sports that involve balls that have to go in specific directions, or worse yet, be caught or batted back somehow.  That whole thing just got depressing.  I sort of wish someone had just said, “Hey, you are not going to do well at this because you are blind AF.”  That might have saved me some self esteem issues as a teen.

My dad was really freaked out about a lot of things in reference to my sight, now that I look back on it, but I didn’t think about it then.  He absolutely HATED getting in the car with me behind the wheel.  Also, he wouldn’t let me mow the lawn because he thought something might fly up and poke out my good eye.  (Hey, that worked fine for me..).

But aside from my vision I dealt with the constant teasing at school for being cross-eyed.  I had surgery at the age of two, and then again at four but all through school kids would say, “Are you looking at me, freak?”  It was really upsetting.  I hated it. My eye wasn’t off by much but it was enough for asshole kids to pick on.

When I was a freshman in college my brother in law, an optometrist, decided that a ophthalmologist he knew might be able to align my eyes a bit better than what the doctors had done way back in the late 1960’s.  The 1980’s had brought about the new techniques of ‘microsurgery’.  So, I went to Houston and this cracker jack surgeon did an amazing job for me.  I felt bullet proof for years.  I knew my sight would never improve but I didn’t care.  As long as I didn’t look like a freak, I was happy.

Well, that surgery held up for a long, long time.  When I got sick in my forties is when things seemed to come undone.  I started to notice it when I was tired.  I also knew things were off when strange doctors in hospitals and E.R.’s would stare at me and say, “look at my finger.”  Dear Lord but that is annoying!  They ask me if I know my eye isn’t tracking with my other eye.  For frick’s sake, “YES!” I tell them.  “I KNOW!”  I have been me this whole time.  I give them the abbreviated version of Katie’s eyeballs and they usually shut up.   And then the next doctor comes in and we start all over again.

Anyway, three years ago an Optometrist recommended a doctor here in Austin that did the surgery on adults and suggested I give it a try.  I did.  I think it worked for a while.  Then I went to Dallas and had surgery and I fell apart and was in the biggest mess of my life.  Maybe that undid it.  I don’t know.

This fall I decided that my insurance premiums were paid up and I had time off from work over the holidays, so if the doctor thought she could make it better, why not?

She has claimed she can give me more sight in the eye as well.  I do not understand how and my brother in law, who has practiced for over forty years and been looking at my eyes the whole time, is skeptical, but what the hell?

So, here I am with my fingers crossed and hoping my eyes aren’t crossed… for once.

I guess it is just vanity, but damn it! I can be vain, right?

So, here it is a bit more than two weeks out of surgery as I finish this.

My eye is still not healed.  It looks  more aligned some of the time but I was told it could take a full eight weeks to make its final adjustment.

I am crossing my fingers this worked.

I have also realized that if this didn’t work I probably need to make my peace with the fact that my eyes are not going to align again.

I don’t want to keep trying.  I think that is stupid.

So right now I am not focused on my nose but I tend to close the eye when I am tired.

Please wish me luck and if you see me, and for crap’s sake, don’t ask if I am looking at you!

Cheers!

 

I have been out of words of late.  I realize that is difficult for anyone who knows me or reads me to believe, but it is true.  Between the worsening pandemic crisis and the horribly acrimonious political environment, I have felt flat.

I have closed my mind off to a great deal of what is happening around me just so I can survive.

Of course the closing of one’s mind is always a very dangerous task.  It can lead to faulty reasoning and warped perceptions of right and wrong.  All I have to do is stick my head up, like some sort of shell shocked prairie dog, and I can see everywhere the devastating consequences of refusing to look around, take in the whole landscape, and put oneself in the place of others.

So, I suppose what I normally do is the opposite: I literally feel the anguish and pain of those who feel they are not represented or that they are no longer important or understood in the midst of a rapidly changing and dangerous time.

That anguish and pain can lead to several things depending on who they infect.  They can turn some outwards, towards looking for solutions for how they and others can make things better.  Or, more often,  these feelings of powerlessness can lead to dark places… places of fear that cause people to lash out at those who are different and to feel threatened by change.  Instead, it is often easier to believe that the whole world is somehow against them and that blame can be laid at the feet of people who easily qualify as “them” and not “us”.

Understanding and embracing difference and change, which is uncertain and a little uncomfortable, is harder than being told by someone that there is a vast conspiracy, a lie, and that only one group, one leader, one faction has ownership over the truth.  This is a falsehood that has been perpetuated over time by many.  There is a long and horrifying list of names of people who have used a time of crisis to slip in and tell people who are hurting and confused that they have all the answers and that the other side is somehow not just wrong but perpetuated by evil.

It is a strange twist of fate that human beings seem to react the same to, time after time. Just in the last century, Adolf Hitler told a Germany reeling from post World War I poverty and distress that if they could purify the country from undesirables who were ‘taking away’ what was rightfully theirs, everything would be better.  His message found its mark because it came just at the right time. The people were tired of war and tired of poverty and struggle. There had to be a solution.  Hitler had a solution.   Did the average citizen realize what Hitler’s intentions were and approve of them?  I seriously doubt it.  However they were willing to look past a great deal of wrong in order to achieve this pure state of perfection he was selling them.

Our world is changing.  We are twenty years into a new millennium and finding out that the planet is only going to handle so much abuse.  The temperature is rising.  The fossil fuels we thought were endless are going to dry up.  The floods and fires and hurricanes are going to keep coming. It is frightening.  For many, the way the lived and worked is going away.  Certainly there must be someone to blame for all of this.

There is.  And it isn’t your political opponent.

It isn’t a ‘fake’ election.

We are all to blame for the environment.  Our great grandparents and all of humanity who thought  the Creation given to us by the great Creator of us all was limitless.

It’s not.  We haven’t taken very good care of it.

We aren’t taking very good care of one another either.  At least not in this country.

We are too busy tearing one another apart and pointing fingers.  This will never work.  There can be no healing when a wound is constantly worried and blame is being laid.

There can be no light in the darkness when we cannot accept one another’s intentions as good and try to proceed from there in unity. We don’t have to agree to join hands and move forward.

We will be certain to reap what we have sown if we continue down the path we are on.

We are not “Us” and “Them.”  We are us.  If we believe we have been lied to and cheated and someone is out to get us and only we and our little group have the ‘real’ truth; things will not get any better.

If you cannot face one another in love and hope then there will be no coming together at all.  There will only be further grief and sadness.

This is why I have been unable to write and unable to voice what I have been feeling.

I am utterly frightened that we have reached a point of no return as a nation.  I pray it is not so but I do not know.

Is this our breaking point?  Do so many of us believe in things that have no basis in fact that we will rip apart from one another?

I don’t know but I am scared.  I am scared to the bottom of my being.  I realize that I have compared Trump to Hitler here.

I do not mean that Donald Trump is going to try and kill all the Jews.  I would be headed out of town if that were the case.

My point is that sowing discord and not peace is ALWAYS  wrong.  It never works in the end.  We must all accept what is and move forward, whether we are happy about it or not.

We have to look at facts, not innuendo and ‘secret knowledge’ and believe in the sincerity of one another.

I know nothing else but prayer and hope.

I cannot, on my own, effect or handle something of this size.  It panics me.  I feel like the ground underneath us has shifted and will never again be steady.

But it has to be.

We are all shaken by a pandemic that has been ripping through us like a war with an unseen enemy.  Surely there is a way to lay blame for this, at least.

Not really.  It is.  We can point fingers, on both sides, as to how it has been handled, or how it is going, but nothing we have done yet has stopped it.  The casualties in our nation alone have far outstripped those we have lost in war in the last fifty years.  The human mind cannot even comprehend that kind of loss.

But we have to hold onto the belief that there are so many times when the light does win and  the  dark recedes again. Fear and prejudice are not the way.

I pray we go forward together as a nation without fear but with open minds.  Minds that are open to one another, and to the future.. whatever it brings, is the only way forward.

 

post script: I no longer have a pulpit.  I used this blog as one with this post.  If you don’t agree or like what I said, that’s ok.  I needed to say it.  Thanks for being respectful of my bully pulpit here.  I did not feel it was right for me to shape these thoughts on Facebook so I did it here on my own platform.

 

I feel like I should write something.  I am just unsettled.  My health is still up and down.  It always will be.  I try to be more up than down.  I am finally past the urinary tract infection that hung on for two and half months.  And I really hope it stays away.

(There.. that was more personal info. than you wanted, right? )

I have been trying to cut down the amount and number of medications I take but it is rather difficult because I don’t know what I am doing.  One doctor, who I see infrequently, is always telling me how bad all of my medication is for me and how I should stop it but he also tells me he knows more than all of the other doctors so I don’t know what to believe. It makes me feel like I have no damned control.

That is nothing new so I don’t know why I am not used to it by now.

I am confused about medication and I am confused about my own personal future.  For the first time in my life, I don’t have any big plans for the next thing down the road.   I am not planning or striving or pushing myself as hard as I can.  I think quarantine for so many months has just sucked those things right out of me.  I am just doing my thing day to day.

Yesterday I got angry that so many days look the same now.  When it isn’t a work day my husband and I go for a walk or hike somewhere with dogs and then we look for outdoor eating somewhere we don’t have to be close to other people.  That is about all we can do.

We had friends over to our deck once.  That was fun.

Sometimes our children come home.  That is nice.

Other than that, we just stay home.

It’s fine.  I would rather be home than sick.

I don’t want Covid.

I just want to feel a little bit of what we all felt pre-plague.

I guess we will someday.

And now, on November 1, 2020 I feel unsettled and scared and sickened thinking of the election that will take place in two days.  I have already cast my vote.

I already gave my meager monetary offering to the cause of democracy.  But, I have never in my life seen so much anger and hate poured out against people of different colors, beliefs, and ideas as I have seen during this presidency and this election season.

I don’t recognize this country.  I am embarrassed by it.  I am ashamed.  I don’t think there is any excuse for this kind of behavior on the part of anyone: I don’t care which party they want to win or who they are.

We are being drug back into a scarier time.

Why?  This is what confuses me.

Is the racism and and Us vs. Them-ism lurking so close to the surface that when it is given a voice it just rises up and screams and speaks louder than love can… any time, every time?

Was it never really gone?

Maybe it just went to its dark corner and slept.  I don’t know but it can’t have my country and my children’s legacy without a fight.

If darkness and all of its ugly voices that speak of division and hate and “Covid is going away” (WTF the numbers are going up daily!!!!) try to take away legal elections this time; may the Lord have mercy on our souls.

I will not go quietly.  And I think there are a lot of folks who feel the same way I do.

I have fantasized about leaving the country but that really won’t solve the problem.  We have to come together and make it better.  We can’t turn our backs on the ugliness.

We are going to have to make a lot of noise.

A LOT.

 

It has been a bit since I actually published a blog.  I have written a few.  I have even finished one.  It just didn’t seem worth it.  After all, I am editing this entire thing with the intent to weave it together into some kind of cohesive whole.  That is a huge task.  I  can’t believe how much and how long I have been doing this. I have never, ever been so regular about a diary than I have about this very public one.

I mean I have diaries: tons of them.  They are filled with poetry and anguish, and hormones and tears and all sorts of things I had before Prozac.

Yeah, well… I still have some of those things post Prozac.  I think at this point I am often too tired and too jaded for those things.  I suppose we all are after a certain age.

But, lest I go off on a tangent here…. (I never do that!) I should actually write the blog post I meant to when I came downstairs and left the bed with the sleeping dogs and sleeping husband and my white noise machine and my earplugs and my pillows just so…..

Good grief! I sound so neurotic.  Oh yeah, I am. Oh well.

What I meant to write about is the fact that I broke my vow to not go into a hospital.   Before this last 24 hour episode, I had not been in a white, sterile, prison with bad food, people trying to find my non existent veins, ask me questions, follow me to the bathroom and all the rest,  for 20 months.

This past Saturday I had to face the fact that parts of me are still falling apart and that I needed help.  I went to the fancy, doctor owned 24 hour ER down the street out of fear of  the pandemic (Covid) and because I am blessed with amazing insurance.  I had a CT scan and the doctor said it was up to me but he recommended I be admitted for observation, comfort care and further testing. I almost told him to stick it and that I was going home, but the idea of having to come back or go through the regular ER, probably full of patients with the plague, made me go ahead.  From the fancy ER they can admit you straight to a room in the hospital of your choice.  You get picked up by exhausted ambulance drivers and they drive you to your overnight accommodations and you skip a lot of trouble.)

It took hours for all of this to transpire.  I was in pain, sick, and nauseas and on the verge of a panic attack the entire night.  And of course, I never slept.

I will not go into detail, but sum it up by saying that the surgery I had in 2017 that led, 24 hours later, to emergency surgery, really screwed up my innards. Nothing is in its place and nothing works normally.  The last consult I had with the gastroenterologist ended with him saying, ” I think it may be best to remove your colon entirely.”

As shocking as being told such a thing was, this past Saturday night, I was ready to go for it.

Lately I have been fighting repeated infections and repeated issues of the nature I mentioned above.  The chase one another.  The medicine that fixes one makes the other flare and so on.

I have been unwilling to even acknowledge this is happening.  I go through each day sucking down whichever pills or what-have-you that are appropriate and I just keep moving.  I work from home, like we all do now.  On the days I don’t work, I find plenty of things to keep me busy.  I talk to my kids on the phone, I cook, I clean, I write, and I exercise until I am really tired.  Sometimes I dream of a simpler time.  A time when I could wander through discount stores looking at stuff just for the hell of it: I miss that.  But we all miss things we used to do before the pandemic.

Oh, and I read the news.  But, that gets depressing quickly so I try to pull myself out of it and read about royalty and movie stars I have never heard of and special interest bits.  Or, I really extend my mind and watch a BBC show about a bunch of young people competing to be make up artists with a contract to a major company or something… .  It’s terribly important.

I spend in ordinate amounts of time talking to my dogs and my cat.  They like it:  I think. I also talk to my husband a lot when he has headphones on or he’s looking at his iPad. (If he isn’t working at his desk and is “available” he is usually with his iPad).   He doesn’t really hear everything I say.  That’s ok.  He doesn’t understand why I have so much to say.

All of this babble is my way of saying, I DO NOT WANT TO THINK ABOUT MY HEALTH AND I DO NOT WANT TO GET LOST IN THE RABBIT HOLE OF ONE DOCTOR, ONE DISEASE LEADING TO ANOTHER DOCTOR AND ANOTHER DISEASE AND FINDING THE NEXT BEST THING SO I CAN GET FIXED.

I don’t know if I feel this way because I am battle worn and have PTSD or if it’s because I now fundamentally believe that I can’t get fixed and that the Almighty and I, in concert, are the only ones that can truly have an effect on my health.

And that, dear reader, is why it has taken me so long to write this damned blog entry.

I am scared.  I was hoping to keep up this charade of the new me; a lot leaner, much more fit, streamlined for the rigors of 2020 and able to put up with just about anything.

I just can’t.  I can be all of those things: leaner, more fit, careful diet, and the rest, but I am still me.  I have a really broken body.  And if I want to keep going I have to keep pushing myself to doctors’ appointments where I have to be active and in charge.  There isn’t anyone else to lean on here.  It’s all me. I have to be organized and ahead of things: write down the questions and keep the answers, tell dr. whosit what dr. whatsit said and remind dr. fullofhimself that I have a brain and can read (but in a nice and non confrontational way).  Oh, and I need to remember it is ok to fire Asshole Mysoginistic Doctor who thinks he is god or at least remind him I don’t want to be called “sweetheart” and  “dear” and he can stop touching my leg.

I still can’t get over the fact a doctor (that I kept seeing!) slid his hand inside my pants and rubbed my hiney and I let him do it.  No, wait, that happened with two doctors.  Maybe getting older is a blessing…

Whatever.  I have to do this again.

I cannot expect to stay in some sort of health stasis.

I think this means I am going to have to do what I know I need to.  I gotta work on the PTSD thing.

I am going to make a promise here.

I think I might actually follow through if I write it down here… pubically… (ha! did you get what I did there?)

I am going to find someone (a therapist type person) with whom I can work on the PTSD over hospitals, doctors and the rest and see if I can’t deal with it a bit better.

I might as well get started.

In a few hours I head to an infusion center for a shot in my leg that I have to stay and be monitored for because I once had.. you know.. not breathing.. happen.

Ok. that’s it.

 

I have had some rough times.  If you have read this blog for any length of time, or you know me personally, you know that.  I spent the years between 2011 and 2018 in and out of the hospital, struggling with a variety of ailments and with a snowball effect of one autoimmune or primary immune disease causing another.

But the really good news is that since January of 2019 I have not been hospitalized.

I have not been going to the ER on the regular either.

I have reached a sort of tenuous equilibrium.  I realize it could fall apart but I try to keep it going each day.

I have learned a lot.  The list of things looks like this and they are in no particular order:

1. Eat carefully and keep losing weight.  (I have lost about 100 lbs. )
2. Stay sane.  (This is a tough one because I am a worrier.)
3. Exercise.
4. Have fun.
5. Love and accept myself for who I am and how I look right now.
6. Be patient with my body when it doesn’t act normal, ever.
7. Let G_d in and remember I am not alone.
8. Don’t let Covid 19 and the quarantine that knows no end get me down.
9. Don’t let the sad state of affairs in our country get me down any more than I can handle.
10. Remember to be grateful for the wonderful things.
11. When I am in pain, acknowledge it but don’t freak out.  Realize that it will get under control in some way and that going to see a doctor in any setting probably won’t fix the problem.
12. Let myself off the hook when I need to rest.  (This is a tough one.)
13. Try to maintain some sort of sleep hygiene.  (A work in process.)
14. Figure out who I am without children around.
15. Figure out where I belong as a functioning adult with her own life.

I think that is enough.  I will say that sleep is a big problem just now.  I have always had insomnia but lately I am losing sleep entirely about two nights a week.   I am going to try some pre sleep meditation podcasts.  I am willing to learn how to hypnotize myself if that is possible.

I  guess the point here is that I have come to realize that the only person driving the me – bus is me.  That is not to say that G-d isn’t there.  G-d is on the bus, with the bus, around the bus and watching me drive.   But I believe we have the gift of free will.  Very often we either misuse it and blame the consequences on the Almighty or don’t get what we want and blame that on the Almighty.  Neither of those options work for me at all.

I believe the Almighty is right there, listening and hoping I will  tune in on His/Her Divine channel so I can listen to what it is that is best for me.  If I do, I will notice a few things: Life is endlessly complicated and endlessly beautiful.  It is up to us to take responsibility for every single thing we do.  Like I always say: there is no such thing as black and white (and I mean this on every level) everything is a shade of gray!

There are no absolute answers .  We just have to take responsibility and go through each day with what we are given.  Even when it is a bad day . Even when it is painful or scary.

The only way for me to fix myself is to care for my body the best that I can.  I am done being angry for being sick and I am done hoping it will go away and I am done wishing I can go away and I am done whining into my spilt milk.

I am in charge.  I chose to take care of this body no matter what shape it is in.

That is the only way forward.

One shaky foot at a time.