Scenes from the Immune System Wars

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!

 

 

 

 

 

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.

 

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.

 

 

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:)

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

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

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

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

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

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

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

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

This all boils down to one thing: GREED!

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

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

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

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

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

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

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

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

It is depressing.

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

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

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

Indeed it is, Mando.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

I try to smile.

I keep my chin up.

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

No. Not really.

Not  even angry, not really.

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

But really?  What the Hell?

And why do I climb and dance around?

It’s You.  It’s always, always You.

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

because of You.

And you know what?

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

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

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

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

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

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

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

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

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

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

Baaaahhh.

Have I made any sense here?

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

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

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

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

 

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

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

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

I am always running to catch it up.

I am not wearing the right shoes.

I am breathless.

Why is this happening?

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

Right, no.

I know the answer to that.

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

No guarantees. No safety nets.

There never were any.  Nothing changes.

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

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

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

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