Scenes from the Immune System Wars

Lyrics from “Defying Gravity”

…I’m through accepting limits
‘Cause someone says they’re so
Some things I cannot change, but ’til I try, I’ll never know
Too long I’ve been afraid of
Losing love, I guess I’ve lost
Well, if that’s love, it comes at much too high a cost…

No, I have not seen the “Wicked” movie yet, but being a musical theater kid I of course know all of the tunes. Who doesn’t want to Defy Gravity!?  Who doesn’t dream of flying?

I have been thinking a lot lately about different ways in which life sets limits on us and how we can chose to defy those limits.  In fact, the movie, “Wicked” is a perfect example.

I wanted to go see the movie as soon as it hit the theaters.  In fact, I wanted to make it an Occasion.  I told you; I am musical theater nerd!  I wanted to make it the dinner -in- the- theater sort of experience, and I planned to dress up in green for Elphaba. Yep, I identify with the green girl that is a little weird!

But none of that happened.  It wasn’t realistic.  I haven’t been in a movie theater since the pandemic.  Going to a movie theater, packed with people and eating and drinking next to them is a recipe for getting sick.  I really cannot  do it and feel smart about it.  Talk about setting limits and being reminded of things I’ve lost!  I really wanted to just ignore reality, leap and  go.

I almost did.

But then I remembered there is no Wizard.  And I am not a real witch.  And I cannot fly everywhere I wish to go.  I am quite literally grounded.

But I can fly with my mind. (I know that sounds strange.)

I can let my spirit fly.  I can soar with music.

I just have defy my own gravity. And by that I mean feeling trapped by my own frailties.  It isn’t always easy. I often feel tired and defeated.  This happens even when I am not suffering through a particularly bad patch, like I did last year with all of the pneumonia, etc.

I don’t like to talk about it but every day is a bit of a struggle with fatigue and pills and insurance, and  doctors and insurance,etc. and it gets very old.

But I can choose to defy my feelings of being limited just because my body is trying to make it so.  I can make my life have meaning and I can fight the fatigue and the depression it sometimes brings by giving of myself to others and standing outside of my own needs, lest I become too inwardly focused.

And I can always remember that there is a power greater than myself that I believe connects each and every one of us in the universe into a whole.  I find great comfort in that because it means that no matter how small and inconsequential and alone I feel: I am actually not alone.  For me, that connection, G-d, reminds me that who and what we are is so much more than these frail shells we walk around in.

Maybe, one day… I can defy gravity.

Maybe, one day… I will fly.

But until then, I will: write my, sing my, love my, walk my way away from everything that brings me down.

 

Grappling is a really rough sounding word. By definition, according to the Oxford English Dictionary, it has several meanings, but what I have in mind here is a combination of two: It can be a noun when it denotes an actual hook device used in climbing and it is also used as a synonym for a struggle or a fight.

For me it conjures up pictures of climbing up a steep cliff face with nothing but a little rope and the might of my own muscles. This is scary because I am not very strong and I don’t know if that rope can hold me.  I suppose that means I am not sure if I am grappling with something I can handle.

I have a feeling a lot of people are feeling that way just now.

Of course, there are many folks who are happy with the current state of affairs and all I can say to them is ‘Mazel Tov’ and I will check in with you later.

Then comes the rationalizations, such as, “it can’t be all that bad.”  Or, “We survived this once before,” which is technically true.  But…we just have no idea how things are going to turn out this time.  It could be truly catastropic or it could be just a slow unraveling of the the support ropes we all thought we could rely on.  And let’s face it, those ropes have been fraying in American society for some time now.

I guess the question is whether or not we are going to stop using harnesses and ropes completely and just free climb and see who makes it to the top and whoever doesn’t just falls and ‘that’s just the way it is.’ And that is one of the things that I find most difficult to grapple with.

What about everyone who falls?  Does anyone care? How did we get here?  This is the opposite of a “God fearing nation” from what I can tell.  If we are “God fearing” we should be preoccupied with state of our fellow humans.  Social justice and the plight of those less fortunate are cornerstones of all of the Abrahamic religions and definitely are at the forefront of the faith most people claim is “American,” Christianity.

So, why the disconnect?

I don’t know.  I don’t understand how we have failed so badly as a society and that our beloved rugged individualism, once a trait that led to success, is so utterly failing us now. And it is.  It is failing us.

Saying that everyone has an equal chance to make it or break it in America is simply not true any longer and if you think it is you are misinformed and or in denial.  We don’t all get the same chances.  The playing field is no where near level.

And that is what I am having a really hard time grappling with just now.  I might be able to tie another knot in my rope and hang on through whatever is coming next but I don’t know if someone climbing down below me is going to fall.  Hell, I could fall too.

Nothing is certain.

We can take nothing for granted.

It is all up for grabs by people who are not looking out for us.  They are looking out for themselves and their wallets, nothing more.

I am still grappling and I think will be for some time.  What about you?

P. S. I wrote this the second week of November.

 

 

I Will Remember

 

I will always remember.

I could never forget. 

The way that you felt.

The way that you smelled.

You smelled just like you 

And nobody else. 

Will you remember me? 

So long you have been gone now.

What is it like? 

In the great, big beyond? 

I have no illusions. 

There are no streets paved of gold. 

I can’t imagine how silly you would look with a golden harp or 

A pair of wings. 

But I hope against hope that there is a place 

Where someday, somehow I can see you again

Face to face.  

And I will recognize you 

And you will recognize me 

And whatever we have for hearts will once again be crushed 

Together when you press me to your chest and pat my head 

And call me your baby. 

 

Life is hard as an orphan. 

I miss the security of knowing you 

Always had my back. 

It didn’t matter that I 

Was grown or that I 

Thought I knew more, or that 

I lived somewhere else. 

I just always knew that 

Somewhere on this earth, 

Probably in the same location, roughly, 

Where I grew up, there was someone, or two someones that 

Thought I was amazing.  

Who thought of nothing but unconditional  love and support for me. 

 

How do I know this?  

Well, I knew it because you lived it for me! 

You were perfectly imperfect.  

And because of that I know that same ache 

For my children as they have spread their wings. 

I will never stop having their backs. 

I will never stop thinking they are amazing. 

I will never stop loving and supporting them without conditions. 

 

It is tough to live up to such a high standard!  

 

I will never stop worrying their flights will make them fall from the 

Sky. 

But I know from all that you gave me that I can be right there, 

Arms and heart wide open, when they need me. 

 

But I will remember you.  

With Every Atom of My Being. 

Because you are Me. 

And I Am YOU, 

And for that I am 

So 

Deeply 

Grateful 

To 

Heaven. 

 

KKT

Today is a fine day for me.  I am in Colorado visiting my daughter and son in law in beautiful Colorado Springs.  The weather is lovely.  We walked around the Broadmoor and saw the Helen Hunt Falls.  We followed that up with a delicious meal at one of the many local brew pubs in town.

There is absolutely nothing  to be sad about in my day.

And yet, here I am feeling as though my soul has been ripped out.

Oh yeah, I open my email and read my favorite Rabbi’s (Danya Ruttenberg’s “Life is a Sacred Text” blog post for today).  I knew what today was.  I had been marking the days.  I knew the high holy days and the anniversary of the horror of last year in Israel on this day would converge.

My feelings, like anyone’s,  are complicated.  But they are complicated by the fact that I am a Jew in a sea of non-Jews:  It’s awkward.

Rabbi Ruttenberg writes about grief and she writes about binary thinking, about the idea that the only “good” type of Jew is the one who is against everything that Israel is doing because it is so obviously bad.  It isn’t that simple. I feel the effects of  that though.  I am a liberal,  an intellectual  and I am a pacifist.

I am horrified by all of the killing in Gaza.  I feel sickened by the spread of the war into Lebabnon.  I want to cry out and scream when I see the bloodied bodies of children pasted across the evening news.

I think  I feel ashamed.  And underneath that I feel angry and and deeper down I feel frightened.

Being a Jew just now is a scary proposition.  I cannot wear anything that identifies me.  My star of David necklace is put away.  I cannot comfortably mention my holidays or my feelings about the war in Israel in mixed company.  I always feel as though I am looking over my shoulder becasue I am the only one like me.

The pictures in the media are constant reminders of exactly what  all of these these terrible, bloodthirsty Jews are capable of.  These bloodthristy Jews who are going overboard in retribution for a massacre  that killed just under 2,000.  Where is the scale here?  What are they doing?  The hostages should be freed by now.

And on and on and on drones the news.

And yet: The U.N. has had difficulty aknowleging that war crimes took place on that day even though people were sexually assaulted and mutilated as they were murdered in their homes and safe places.

Hamas and Hezbollah and Iran are all agreed: The only goal is the eradication of Israel from the face of the earth.

What exactly is Israel supposed to do?

What would any other nation do?

I don’t think this should have ever happened.  Some piece of Israeli intelligence massively screwed up. I think Netanyahu is a bad prime minister and he needs to go.  A great deal of this is his fault.

But all of this bloodshed did happen and it will continue happen as long as Israel exists because it is the only democracy in the Middle East and for some reason I do not understand everyone hates Jews.

I want this to be over.  I know everyone that lives in Israel, Gaza, the West Bank, Lebanon and Iran probably wants this over.

Please, G-d in heaven, let this be over.  Your children, Jewish, Muslim, Christian, they all worship you.  Let them see their not their differences but their similarities.  Let them notice not what belongs to one of them but share openly what belongs to all of them and understand that their homeland is a gift. If they grasp one another by the hand and look into the eys of a neighbor, then they will find peace and then they will see You.

 

 

 

 

I don’t know if anyone is still reading my blog but I have decided to keep writing it for myself if for nothing else.  I guess I am an exhibitionist when it comes to writing.  I just do better work if I think I am writing for an audience.  I suppose that makes me a bit of a Diva, but that is a part of my personality I am well familiar with in any case!

I am tired.  I am really wiped out.  We have been through a lot of change recently, none of it really bad, but between that, going back to work part time and just trying to stay healthy and  I have sort of hit a wall.

It feels as though my nervous system, whatever that is, cannot handle much at once.  I get unbalanced very easily.  I know this is because my body is always struggling,  because I am sick, but understanding it in real time is not clear cut at  all. Or, understanding the effects is not clear cut. I don’t know how to deal with life when I can’t seem to just power through it.

There we go! This now is the thesis of my essay: I don’t know how to deal with life when I can’t seem to just power through it.  (Can you tell I teach rhetoric and composition for a living?).

I was taught to power through by my strong willed mother and by my father, who was often sick when I was growing up.   That combination  influences the way I deal with life and with being unwell physically.

In German there is a great way to express this: “Schaffen, Schaffen, Schaffen.”

That just means, “Work, work, work” in the literal sense but it really is the idea that when there is work to do, whatever that may be, we just do it and do it until it’s done; end of story.  Germans tend to work hard at work and play hard at play.  Americans seem to mix the two, which is I think problematic in its own way.  Both systems have their issues.

I don’t think I am at peace with either system.  I have a hard time with just sitting still and not accomplishing anything.  I always feel there must be something I can get done.  It is like I have to justify my existence.  This is a real problem when on some days I really just need to rest.

I am trying to learn to give myself permission to be at rest and to not second guess how I think the people around me judge my inactivity, which is always an issue for me.  After all, I live with someone who is a devotee of “Schaffen, Schaffen, Schaffen.”

I don’t think I am being judged.  I am judging myself.  I hear lots of old voices in my head saying, “Katie, get off the couch.  Get your ass in gear.  Naps are for the weak. You will feel better if you do ‘X’ .”  Those are loud voices.

I suppose it would make sense to bring this all back to what I started with: change.  Change has been in the air here and with it my routines have been different and thus I have been off kilter and tired.  But, hard ass that I am, I have not given myself much credit for the fact that I am adjusting to new life rhythms.  For instance, I now live with (count them) FIVE dogs, one cat and one bird.   There are four adults living in my abode rather than the previous quiet I was used to.

That all equals change.

Change isn’t bad.  In fact, it can be exciting and stimulating.  But it just seems to wear me out.

I have lost the ability to be flexible in as many ways as I used to be.

I don’t like that.

But, nobody ever asked if I liked any of this shitty health stuff.

It just is.

It is kind of like age.

I don’t like aging and I refuse to do it gracefully.  Fuck that!

I will go kicking and screaming.

And ultimately, change is what keeps us vital.  Without it I would fossilize… so

Viva la Change.

 

 

It would seem I have run out of patience for being under the weather.  Somehow, years of being sick has piled up on me in a cummulative fashion and I just go nuts now when I have to be quiet.

I had sinus surgery five days ago and I have zero tolerance for the fact that my nose hurts, it’s stuffy, I feel exhausted and I can’t really go anywhere.  I don’t remember being this way in the past.  In fact, in the past I think I sort of sank into feeling crappy and just got through it without thinking too much.

I don’t know what the difference is.  Maybe I was stoned?  Maybe I was so tired I couldn’t fight it?  Maybe I didn’t have this feeling I have now of urgency.  I always have a feeling of urgency.  I have to do everything just in case I am completely taken out and don’t ever get better again.

That is the crux of the problem right there.  I do feel there is a guillotine hanging over me and that I have to squeeze everything I can out of each day, each moment, until that thing falls and hits me, I know not where, and stops me in my tracks.  I realize that sounds dramatic and I don’t mean to aggrandize my situation, but I just never know what is around the next corner.  I guess no one does, but with me, the nasty surprises have sort of piled up.

This brings me to a point I know I need to address.  I am a big believer that any and everything can be improved  when it comes to one’s mental/spiritual state.  It is just like anything else; it takes work.  I decided a while back I needed/wanted to put in the work to get rid of this guillotine feeling, which I think is based in medical trauma, by working with a specialized therapist.  I started that and it was really good and then found out that the therapist was not on my insurance.  Since then I have spent quite a bit of time seeking out someone new and had no luck.  I need to call my insurance and ask for a list, etc. and I have been putting it off. Why have I been putting it off? It has felt like too much.  I just reach a point where more doctors and more insurance and more phone calls overwhelm me even when I know it is in my own best interest.

Human nature is a strange beast.

The good news here is that I am writing! I am writing here and I am writing on my novel and all of that is just flowing.  I can’t complain.  At least some part of me is working!

And for those things I am really most grateful.  I will take it! Any progress is good progress.  Any forward movement is not backwards movement and it is not standing still, which is what it feels like right now with my stupid nose and sinuses.  I am standing still with my achy and stuffy nose, just waiting to be able to take off again.

For now I will have to find patience and be grateful for the mental energy to write and to think.

 

 

 

So, a lot of stuff has happened.  I just have not felt the urge to write.  I don’t know why.  I have been reading and researching things for my novel but when it comes to actual writing: about myself or about my fictional characters, I have been frozen.  It is frustrating.  I have heard of writer’s block but until now I had never really experienced it.  It is unbelievably irritating because I have always been the sort of person who believed that if I just pushed harder, things would get better.  That does not seem to be the case here.

The more I push, the less I actually manage to get onto the page. I begin to wonder if I was ever really a writer after all.  Maybe I just made all of that up.

I have been pushing and writing on my novel daily but writing here, writing about myself has just seemed really unattractive.  I just feel bored with the thought of detailing my ongoing health crap.

Things are better than they were this past year with the pneumonia and Covid but certainly not perfect.  I guess they never will be.  In the next week or weeks I have to have my rechargable battery for my spinal cord stimulator replaced.  The battery is in my right hip, just above my butt cheek:).  I have had this one five years so it is about to go bad. Apparently the new one will be easier to re-charge so that will be great.  I just am not looking forward to it.  I will have to sit on ice packs for a couple of weeks and it will definitely hurt.

Beyond that I continue having issues with my nose and nosebleeds.  I am looking at more surgery there and I just don’t want to do it.  The inside of my nose is a nightmare.  I have to have part of it cut out because the surgery in May where the doctor went in and blowtorched it didn’t seem to work.  However, even getting the damaged section removed is no sure bet that the nosebleeds will stop so I am loath to do it.  Yes, it will stop some of the problem but it will not stop all of the problem.  So… ugh.

In other health news my insurance situation is better but I am still fighting to get my prescriptions and afford them: welcome to the USofA.

That’s my health news.

Beyond that I have family news.  One kiddo and spouse moved out of state and one kiddo and spouse are moving into our house.  It should be interesting.

In terms of things horrifying and interesting we had a dog incident for the record books a few weeks ago.  I had a friend come to stay with her two dogs.  One of the dogs is a really small, long haired chihuahua.  For some reason Barkley, our golden, thought the little dog was not a dog, I mean, it came bouncing through the house and he came through the back door without any introduction so that is my fault.  Well, my golden, Barkley, who is a good boy, put my friend’s dog in his mouth and started to EAT HER.  It was a BAD SCENE.  He did drop her when we told him to but this resulted in a nightmare visit to the ER vet and surgery and a nick to her liver and cost me a great deal of $.  Fortunately the sweet little dog is OK.  I felt awful!  My friend’s dog is so sweet and cute and I was so excited to have her here and then what happens?  My freaking dog eats her!  OY.  What an adventure no one needed.

Barkley’s new name is Killer.

None of the ER vets could believe a golden retriever had snapped at a little dog like that.

Nothing like keeping things interesing, right?

So, I have been doing a lot of reading about the Taos area and its history and that his helped jump start my writing.  I am just slogging on and challenging myself to keep going whether or not I think it is good. Writing fiction is a lot harder than writing this sort of personal narrative.  I have been a vocacious reader my whole life and I am tough on the people’s material that I read. That means that I expect a lot out of my own writing. I am constantly thinking that it is too simplistic or something.  I have to set that aside and just go for it.

I think that is a good lesson for life in general.

I keep thinking about the word: resilience.

A friend of mine who I meet with periodically to talk about my spiritual well being tells me sometimes that she sees me as being particularly resilient in the face of my health challenges.

For instance, last Thursday a week ago I had the worst nosebleed I have ever had.  It gushed for over a half hour.  I did not want to go to the ER.  I finally got it to stop but I felt kind of light headed.  So, I am having surgery on Tuesday.  I don’t want to do it but I don’t see any options.  Between then and now I have just kept going and exercising and working on stuff.  I mean, what else do you do?  I can’t sit around and wait to bleed.  I refuse to be held prisoner by my own defective body.

I will get my parts fixed as best I can and just keep going.  That is all I can do.

It doesn’t matter if I am down for a bit.  I just have to pop back up and keep on.  I refuse to be defeated by a bloody nose, a battery in my hiney, an achy back or anything else.  I might just have to temporarily slow down a bit.

Other than that, careful or I’ll run you down

 

 

 

I   think I am inspired to make a new blog or repurpose this one.  Maybe it will turn into a new book that very few people will read! Nah, it would be far too depressing.  It wouldn’t do to write it without doing a lot of research and the research would be difficult because the subject is wide ranging and has no clear beginning or end. It just unravels endlessly like some gigantic ball of  yarn made of bureaucratic, red, string.

I just read a statistic today that the U.S. is no longer one of the top 20 happiest countries in the world.  Ha! I wonder why? Could it be because we cannot afford basic health care and our life expectancy as a nation is suffering as a result?  Look, I realize that I am very privileged.  I have an income at one of the highest brackets in the U.S. and I have had good, commercial insurance through my husband’s jobs all through the years that I have been sick.  But, on Feb. 1 we switched to a new company when he switched to a new job and everything just hit the fan.

The cost of providing health care to employees has gone up for employers and employees alike.  Each and every year we have felt the squeeze.  Our premiums have risen.  The cost for prescriptions has risen.  The number of calls I have to make to get access to my expensive drug treatments has gone up and most insurance companies put up roadblocks of some kind or another trying to make sure I really have to have the medication.  Of course they don’t want to pay for it!  I am their worse nightmare!  But, after a number of phone calls and some manuevering I am usually able to get what I need.  This time it is different.  There is a new way for insurance companies to organize themselves such that they can skirt the law.  They do not have to cover my infusion medication at all.  Without this medication, I get even more infections and I have even more difficulty fighting them successfully.

So, I have been very proactive in trying to find a way to get my medication.  I do not take no for an answer when it comes to my own existence.  I am not going to let them tell me, “too bad you just have to go without… we are really sorry.” No. I have been on the phone and online for days and weeks and hours trying to figure things out.  This is taxing and demoralizing.  It is hard not to take it personally sometimes.  Yet, I know it is not personal.  It is a business decision.  It is about money.  The people who make money from commercial health insurance are not altruistic.  They are in it for the profit.  That, in itself, is a problem.  Somehow, those two things should not go together. It doesn’t really make sense.

Let me be more explicit.  My infusion medication, the one causing me the most difficulty to obtain, costs $10k a month.  I have been on it, either through infusion through IV at a facility, or like I do now, through subcutaneous infusion at home, for about twenty years, with a couple of breaks.  During those breaks, I was really sick.  I also take several other medications that most insurance companies want a “prior authorization” for.  That means the doctor has to go through a lot of paperwork to explain and justify to non-doctors why I should have a more expensive medication and they should have to pay for it.

So, the upshot of this currently is that : 1. Am completely unable to get my infusions paid for AT ALL by our current health insurance. 2. I have been going back and forth with them over numerous medications they don’t want to pay for and am down to one that I have not had access to in more than a month and they will not accept the doctor’s phone call. 3. I cannot see one of my doctors anymore and need to find a new one. .. (which isn’t unusual). 4. This is our fourth insurance change in 15 mos.

Where I am with all of this: I have signed up for a program with the manufacturer of my infusion medication and have just received my second months’ worth of free medication while I work on another avenue for insurance. Fortunately, God is good and another avenue has opened up a way forward.  I am going on Medicare even though I am not old enough:).  I qualify, it turns out, because I am on disability.  But, it is not easy to get it going.  I have been trying to fulfill the paperwork requirements for weeks and there is always another bump.  I am not there yet and I have now heard that it may take months to get my application through even though I am technically already on part of Medicare; part A.

So, where am I really with all of this?  Why am I here?  I am here because I am… disabled. There it is folks. That is the word I hate to even utter to myself but it has been staring me in the face and screaming my name ever since last June when I got so damned sick. Well, really it started a year ago in March of ’23 when I first got pneumonia.  It feels like my carefully constructed version of myself as a functional human has been blown to hell.

The thing is: I was never all that functional.  I think that is what bothers me the most.  I knew things were precarious.  I knew I had no control.  I knew my exercise routine and my energy levels and my constant fight with fatigue and pain, which I try to ignore, were the tip of the iceberg.  Now it feels like the ship has run aground and is taking on water.

At the same time I have been sick, hospitalized for pneumonia three times, kidnedy infection and Covid,  I have come up against this insurance behemoth.  It feels symbolic somehow.  It feels so very personal.  It is like the insurance people are saying, “You are too expensive.  Why don’t you just go die already?”

Yes. That is exactly how it feels.

And my answer is always the same defiant: FUCK YOU!

So I fight and I go and I call and sit on the phone and I spend hours and hours trying to find a way to get my medication and yet, by God…. I am weary.

And speaking of God…. I sometimes wonder. Where in the world is She?

But if I take the time, I can find Her/They/Them.

They are never very far.

They are always waiting for me in the music.  And on that note

(ha, see what I did there?)

I’ll end.

Praise God for the energy to say, Fuck You to the insurance companies and all they represent.  May they rot in hell.

 

 

 

 

 

 

I have always lived by the old adage, “If you don’t have something good to say, don’t say anything at all”.  I really don’t know where, why or how it became so ingrained in me but it is just something that is deeply a part of my being.  Writing this blog, and the book that came from it, I have realized it is a sort of “brand” with me.  I think it has been/is a good coping mechanism for being chronically ill.

Well, BUMMER.  For one of the first times in this long assed saga I just don’t feel like I can put a hopeful spin on things.  Maybe, as I write this, I will get there.  Perhaps the clouds will part and the sun will come out and once again I will become the “warrior” people call me.  Well, let me just address that whole “warrior” label while I am at it.

I did not sign up for active duty:  I was drafted.  The only reason I am a warrior is because a gun was put in my hands and someone started shooting at me.  I started running and shooting back and it just never stopped.  And, Oh MY GAWD, but I am fatigued!  I am so tired of war.

Every time there is a pause in the fighting, I think it is over.  I sit down with a cup of tea and a cookie and pet my dog and start to plan a life beyond the battleground.  I even begin new projects.  I start to learn a  new language or challenge myself to walk further on my almost daily walks.

Then the sniper fire starts up again.  At first I can just hear it a little in the distance.  I tell myself I am hearing things.  There couldn’t possibly be another battle coming my way.  After all, I have had enough, haven’t I?

But the sounds get closer and I realize it is coming for me.  I hear the ratta-tat- ratta -tat -tat -tat-tat of the enemy’s arsenal trying to blow its way through my poorly built defenses and I tell myself I will not fold.  I cannot.  I just can’t go back to wherever it is going to take me; a hospital, a doctor’s office, bed bound, couch bound, zombie land.

And then it’s right in front of me.  It’s firing at me.   I am shooting and nothing is coming out of my weapon but blanks.  My body is not cooperating at all.  In fact, in the last few weeks everything has gone haywire and I have been so damned sick and depressed that I have had a circuit from the couch to my bed and that is about it.  I was in the hospital with pneumoia for the 3rd time in 10 mos and I have a couple of other things going haywire.

I am getting better.  I am not going to die of any of this shit right now.  I am just overwhelmed with the constant battle.  I don’t really have anything good to say.  The only good thing I can say is that my husband is pure gold.  He has done everything and more for me and for him I will try to get better.

I have a lady problem and the doctor in charge of my pneumonia is a very nice young man but he doesn’t get it.  He won’t prescribe the medication necessary to deal with a side effect of a great deal of steriods and antibiotics.  It is beyond upsetting and makes me feel angry and powerless and humiliated just when I have had enough of that.  When I see him on Monday, I plan to school him a bit and in a nice but firm way.  Medicine is not an exact science.  I hope he can hear what I have to say.  In the meantime I call around to doctors and beg for medicine.  It’s not pretty.

My colon is almost completely dead.  That’s right:  Colon doesn’t want to work anymore.  I have to go to physical therapy for my butt!  It is so stupid and gross that it would be funny if it wasn’t happening for real.

The good news is that my dependence on an oxygen tank is lessening.  I can get off the couch without getting dizzy.  So, you know, there is progress.

So, there it is.  I just confessed all of the disgusting realities of my war torn body.

I am a reluctant warrior.

My flak jacket is riddled with holes and no longer stopping the flak. There are holes in all of the places that are supposed to be covered and I no longer have a helmet.  My gun keeps jamming and the soles of my boots are flapping wildly when I try to run.

A large part of me is starting to say, “Why bother?” But, I will find a reason to keep running.  Even if I don’t run for myself, I will run for my family.  I know they care whether or not I am around.

So, you see, I don’t really have anything good to say today.  I know I should bring this back around to the Divine.  But truthfully,  I have no idea where the Divine is right now.  I think She is on hiatus from my life at the moment.  Maybe it is me that is on hiatus.  Probably that is the case.

To be honest, I am just sort of pissed.

That may be OK, to just be pissed.

I will leave it there for the day.

 

Well, the title tells it all here.  It is no secret to those that know me that I have struggled with my weight and with my self image all of my life.  I freely admit that my brain sometimes tells me to eat or to graze because it doesn’t tell me when it is full.  It is like having an evil angel on my shoulder whispering “Eat it! Screw the diet… just eat!”

In 2017 I had a gastric bypass.  After struggling with my health and being on steroids for years, I had hit my highest weight and I just could not get it to budge.  The surgery nearly killed me but I made it and I have a 75 lbs loss five years later.  I am in shape and I know what foods I can and cannot eat safely.

However, there is a final 25 to 30 lbs that  need to come off.  My ideal weight used to be 135 but I am not going to worry about that.  I think (know) I can be healthy at 150 lbs.  The problem is, how to  I get there?

Each and every year since the gastric bypass I have lost weight, very slowly. I exercise, I abstain from all meat except fish, and I limit dairy and gluten as much as I can.  I do not drink alcohol at all.  I have a very damaged pancreas (due to a birth defect) and that causes me to have problems with digestion.  I do not break down the food normally anymore. My liver has taken a hit somewhere along the line so I have to be nice to it as well.

About 6 months ago I had a gastric emptying study.  This is a radiologial exam  and  you go in fastng and they give you radioactive eggs and toast.  Then, they do a scan of your digestive process once an hour for five hours.  The findings were interesting.  As a result of the 2017 surgery I now have a syndrome called, “gastric dumping”.  What that means is that everything that goes in my little, or bypassed,  stomach falls right out of it without breaking it down very well.

I have wondered if that is causing me to hungry but I am not sure. I have, unfortunately, been on and off of prednisone through the summer and  fall so that could be a problem as well.  However, the real issue is that for the first time in years I am struggling with that angel from hell on my shoulder.  For most of the last few years I have been able to keep her fairly quiet.   Right now the bitch is out of control… she wants to control me.  Bitch is talking to me non-stop. She says, “Just eat this one cookie…. you are fine!” She is evil… pure evil.

I am fighting her with prayer and with accountability.  I pray the serenity prayer about 50 times a day.  I ask G-d  to help me quiet that voice.  At night I write down my food for the day, as honestly as I can, and send it off to my weight loss buddy.  She has a little bitch on her shoulder too.

The pattern I have gone through these last years is that all of this comes and goes.  I lost weight over the summer when I was in the hospital for most of a month.  I had zero appetite still when I got home so the loss continued.  The last month or so have just been hell.  I wish I knew why.

So, I am tired of doing all of this.  I am tired all the way down to my bones.  I want to lose that last bit of weight and see if I can possibly have surgery to remove some of my excess skin and put my boobs back up in the normal location on my chest, rather than my waistline.  It turns out that losing a great deal of weight in your 50’s has definite drawbacks.  So, what to do?

Well, my weight loss buddy is on a drug called Metformin.  It is an entry level, well studied, drug used for diabtetes and weight loss.  I decided to reach out to my endocrinologist and see if I can take it.  Apparently it doesn’t always work for people and I did find out that some of the other new weight loss drugs have possible pancreatic side effects. That basically rules them out for me.  So I may just have this one shot.  I really hope it works.

I saw my endocrinologist.  Long story short, Metformin had too many side effects.  He wanted me to try one of the new diet drugs but my insurance will not pay because I am not obese and I don’t have diabetes.  Besides, I am pretty sure I will react.  I did go back on a drug called Topomax at his suggestion.  It is initially a drug for nerve pain and migraines but it definitely reduces appetite.  I don’t know if I will stay on it or not. One of my doctors disagrees with it.  I will discuss it with my pain dr. when I see her next.

Today, I sit here on the other side of some very busy holidays and listen to the entire score of Handel’s “Messiah” while I bake and stay fairly quiet.  Before Christmas I met with my wonderful voice teacher.  He said something I knew in the back of my head but didn’t want to aknowledge; there is something wrong with my voice.  I have whole sections of it  missing.  It is not getting better.  If I talk for an extended period, it gives out.  If I try to warm up my voice and sing for a while, it just doesn’t work.  I had begun to think the part of my life when I was a singer was just gone.  I was trying to let myself understand and mourn that on some level.  However, I kept going to my lessons hoping for a miracle.  When my teacher pointed out the obvious it was a huge sense of relief but also sort of like the tiny hole in the dam came unplugged.  I have just been feeling a lot of sadness.  It is like having a limb cut off.  In fact, listening to all these familiar tunes from Handel, and I have sung every one of them, makes me smile but also makes me cry.  I don’t know if I will ever again perform any music with a symphony.  Even if I get my voice back I can’t seem to go to a rehearsal without the danger of getting sick.  It really feels like a sick twist to things.

I should not dwell on it or think of it at all.  It does me no good.  And yet, I feel this huge gaping hole in my center.  I don’t know how to fill it.

Help me Lord!