It Has Been A While

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




Insurance is not assurance; the fracturing of American healthcare in very personal terms.

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.







When You Don’t Have Something Good To Say….

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.


Struggles with Food and Body Image and I Must Keep Singing

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!






How Precious is this Life?

Lately I  have been reminded of just how abundant life is.  It comes in colors and  smells and  pictures and voices.  All of it combines together and makes the complex thing we call living.

I was reminded of the beautiful complexity in things by several events.  Last weekend we attended a lovely choir concert that explored the idea of prayer across cultures and across religions.  It was wonderful and it made me feel hopeful at a time when hope is a scarce commodity.

On the other hand, I personally know someone who is very sick and has a terminal disease. This person is in their early 30’s.  That means that life will not be abundant for them.  It is tragic.

Also, I think of the people in Israel and in Gaza.  There are no good answers there.  Israel has a right to defend itself and the civilians in Gaza are not the intended targets, however,  they are being killed and maimed;  The target is Hamas, an organization that calls for the destruction of Israel.   It seems  Hamas is letting its own people die to make a point.  In fact, I wonder if Israel was not drawn into to this simply so the Palenstinians would look pathetic to the world and Israel would look like the agressor.  Antisemitism as at a high point the world over and this war is not helping.

Personally, I think a two state solution is the only thing that will stop the constant war and terror that Israel and the citizens of Gaza and the West Bank have endured. However, no one can seem to agree on that either.

It feels hopeless and it makes me profoundly sad that my brethren in Israel are once again sitting on the knife’s edge of a larger war. It has to end at some point.  How can a people and a country survive in a state of constant alarm?  I don’t really know or have the answers but it has made me think of the abundance and the cruelty of life.

I keep watching pictures and reports of children in Gaza. I see them screaming and covered in dust and blood.  Their lives are hanging in the balance  due to a conflict that has absolutely nothing to do with them.

I don’t think there is a fair way to do war.  War itself is barbaric and I feel embarrassed and chagrined that it is the 21st century, and yet, despite our large amont of technology and medical advancements, we still bomb, maim and kill one another, and we have no system for protecting and saving the young and the innocent from war’s ugliness.

All of this just propels us towards more and more violence.  I don’t know where it ends or who is right in this whole situation.  I would venture to say that no one is right.  The Palestinian people were brought into modern day Israel by the British government in the early 20th century.  They were not a nation or a people originally.  They were arabs who were told they could live in what was then a British Protectorate. So basically, this whole thing is a result of colonialism that ended a hundred years ago. What a damned mess!

Sorry to go on with such a depressing topic but I was reminded yesterday that my life is abundant.   I get to go do things like the opera or a choral concert.  I go out to eat.  I can exercise, most of the time.  I am working part time and making a little bit of money.  I have great and happy kids and a good marriage. My life is abundant and yet sometimes I feel that it isn’t.  Why it that?

It has to do with the chronic illness thing, of course.  As I have said here before, I cannot do all the things that I want to do.  My wings are clipped and they are going to always be that way.  I have to think back to this past summer when I was so sick that walking up the stairs was a once a day effort.   I have come a long way since then.  However, the thought of that nightmare is still with me.

I choose to make my life as abundant as I can, clipped wings and all.  I have to be satisfied with that.

Yesterday we were grabbing dinner after the opera and I mentioned to my husband that the friends who invited us seem to do so much: work, church and volunteer work.  I was mind blown that they fit it all in.  My husband said, “Well, our lives are slower because of your health.”  Yikes.  That really bothered me because I don’t want to clip anyone else’s wings on my account.  To be honest my family has never been the kind that rushes from one thing to the next but my husband is right, we do less than we would because of me.

So I can’t let that fact depress me or I will spend energy on something I cannot change.  I just have to remind myself of all of the good things that are happening and not think about the things that aren’t.  It is just a part of life and when I put it in a wider perspective, it is fine!  I am able to do more than I could for many years and that is wonderful.  Might this relative freedom suddenly get ripped out from under me?  Yes, it might.  But, I always have a choice, which is not what people whose lives are torn and upside down from war, don’t have.

I choose abundance.


Why grieve?

So things are improving.  I am stronger but still not completely strong.  I think I am mostly back to my regular weird self.  I have weird low grade fevers and rashes and can’t sleep at night sometimes:Yup, that’s me!

I am still trying to put my shattered PTSD brain back together.  It turns out that mental trauma healing takes as long or longer than physical healing. .  My therapist explained that I am still in fight or flight mode to some degree.  It takes some time to get that super vigilance to stop and it eats up a lot of energy.

It also turns out that under all that PTSD is a big, fat emotion called grief.  I have never really given grief or all the other negative conseques of being chronically sick, a lot of room in my head.  I have been on the “pop back up, dust off your pants and keep going” train.  However, I am realizing now that grief is really something I can’t avoid.

What do I mean by grief?  I guess it would be a lot of things.  There are things in my life that I want to do, desperately, and I haven’t got the fortitude to do with  work amd the rest of my life .  As I have said here before, I want to go back to a choir.  I also want to find a congregational home. I want to exercise more often and for some reason 3 times a week is all I can do. I wear out and I get down that this life of curtailed activities will never end.  I try hard to NOT think about what will happen to me next, because I have no control over it anyway.  But, I am human and I do think about it.

I think about when I was in my 20’s and 30’s even 40’s  as I went full tilt, all the time. At least that is what it feels like I did.  I feel sad that this ability to do what I want whenever I want is simply gone. I am grieving the freedom I had when I wasn’t permanently  sick.

I didn’t know it was a gift at the time,  but it was.

I do plenty of things now and am by no means retired or retiring.  That is just not me.  But, I recognize the stages of grief and feel like if I can call them out for what they are, maybe I will land in a better place.

Some specialists say there are 5 stages of grief and some argue for 7.  At the end of the day it doesn’t really matter but while I was reviewing those steps I looked at sadness, which apparently occurs long after the thing you are grieving has happened.  I would say that I am at that stage: sadness.

I am not bitter or particularly into bargaining and shock or even depression anymore.  I am just sad that I can’t always join in when I want to.  Instead, I have to be reasonable about my level of energy so that I can save the energy to do the thing or things I have prioritized for that particular day or week. Things could be a lot worse.  In fact, I know intimately how things can be worse. So, I try to keep that in mind and not chafe against my restrictions.  It just makes me sad sometimes.

It is best, I think,  to simply take each day as it comes and not think too much about tomorrow or later this week or a few months from now.  At least that is the goal I find most appropriate.  The problem is that I seem incapable of confining my thoughts to one day at a time.  I have a feeling this is common for a lot of people, those  with and those without some sort of chronic illness.

So, today I just want to aknowlege that I am sad about some things but I am also grateful and happy that today may be slow because yesterday was very fast but the important thing is that I show up, every day, for the fight.



A rough patch

I have not been well at alI ; I have been really sick.  The pnuemonia came back and it was worse.  I woke up one morning and could barely take a breath.   I was admitted via the ER and was on drugs, and oxygen.

After that, there are days I don’t remember.  I was put on a ventilator for five days.  The first thing I remember after that was sitting in bed and my brother was there.  He asked what I needed and I couldn’t really talk. The only thing I could manage was a grunt and point. I know now that I had a very scrathy throat from having the oxygen stuffed through my mouth.

I think I stayed in the ICU for a total of  7 days but I could be wrong.  After that I went to a regular room and I remember pretty much everything  from when I was there 14 days or so.

I have never experienced the horrible weakness I have.  I was hiking 3 miles and riding horses before this.  Now I get tired walking to the car.  That is really irritating.  I guess I went through the same thing in 2017 but I was so stoned it didn’t seem as bad.  I am definitely NOT stoned!  This means that I am living the struggle to get back on top.

But the thing I want to say here is that we think the whole thing started from me somehow getting my lungs inflamed.  That scares the pooky out of me.  I really don’t think I can survive this again; physically or mentally.  We are doing our utmost to make sure I know my lungs are inflamed and why but there is definitely an element of it happening again no matter what I do.

That all brings up the conversation about what my family will do if I am gone.  It is scary to hear that your family has been having the conversation while you are intubated.  It really shook me.  However, I know it is practical.  It just doesn’t make the thing any better when the person struggling for their life hears of it later.  I mean, I know why my family had to discuss it but it is was very difficult to hear.

Which brings me to another key detail: I have lost four of my closest relatives who died at 64-66.  One, (my cousin Steve) died as I was getting home from the hospital. This is a difficult thing… factoid to swallow. I am scared.  I am not scared of death itself but I am not ready to do it in a few years.  I just turned 58 and I want to stay around a little longer than my relatives.

I guess, ultimately, it is not my decision.  So I feel that there a sword of Damocles hanging over my head.  I don’t think anyone finds that comfortable.  Somehow I need put it out of my head and just live. That big, heavy sword is going to swing back and forth for the rest of my life.  I probably have already made friends with it but I have to renew that relationship every time something like this happens.

I am working hard with the physical therapist.  I have made huge strides.  It is just hard to realize I lost my entire summer to illness.  My sprititual advisor, who is awesome and visited me in the hospital and here back at home, said it most succincty:  “Move forward into each new day and let go of the things that concerned you yesterday.”  I mean, that is a summary of her advice.

She is right.  That is all I can do.  The other piece is that I have to trust in God that I will be OK.  I have a theological difficutly with that.  Let me be plain, I  trust  and believe there is a higher power.  I love studying Torah and Talmud.  But, I believe in a God who basically creates and then sets us loose as it were.  God does NOT make people sick or well.  Instead I believe  that my contract with God is reciprocal. This is similar to things I have written before.  We can count on the higher power/ creator to be there if we let them (gender neutral on purpose there).  We can access that partnership without thinking that we deserve it because we  are good people so everything should just go well. Instead, that Being cares for us, abides in us and loves us without telling us what or our faulty bodies to do or why.  We are faulty and God loves us anyway.  If we ask for guidance it happens all over our lives: serendipty is what some call it.  I believe there is more to it than that but I don’t think God really intefers in our day to day lives.

Basically, it’s damned confusing.

I remember as a child I would ask my dad what infinity was.  I wanted to put meaning on something I couldn’t comprehend.  I guess that is just what I am saying. Me being sick or well or dying is not part of a grand plan for my life.  But, the key part is that whatever the case is I can call on my God/partner and ask for help when I feel helpless.  This, in turn, opens my mind to all of the good around me.  And, from that goodness I draw strength.

An example here would be how my family and friends visit me when I am in a hospital.  They are there, supporting me and loving me and that is God in them. We are all made of divine light if we choose to see it.

I guess the key is to be open and receive that light so it can make our path through this life somehow make sense when it is really too big for us to comprehend.

Does that make sense?  HA!  My either.   I am trying to explain the ineffable.  So I think I will just remind myself, no matter what is happening, that I can receive the light of our Creator through his created.  That means anyone: a nurse, a friend, a family member, a pet.  It can literally be anyone, anywhere.

My head hurts from all of this complicated stuff.  I think I lost a few brain cells in this whole process!  In any case, the ineffable is there but it is compllicated and we have to want to seek meaning in a situation where there doesn’t seem any meaning is there.  That’s a choice we make.

I am going to keep reminded myself that I choose to see God in others.  I really think the ineffable is only comprehended in that way.

I will stop now.  This post is ridiculously long.

Thanks for reading:)

Old Meds and Still Crazy

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

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

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

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

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

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

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

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

This all boils down to one thing: GREED!

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

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

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

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

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

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

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

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

It is depressing.

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

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

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

Indeed it is, Mando.

New Meds and New Crazy

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

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

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

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

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

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

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

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

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

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

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

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

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





Why in the Hell?

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

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

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

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

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

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

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

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

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

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

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

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

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

I try to smile.

I keep my chin up.

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

No. Not really.

Not  even angry, not really.

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

But really?  What the Hell?

And why do I climb and dance around?

It’s You.  It’s always, always You.

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

because of You.

And you know what?

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

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