Scenes from the Immune System Wars

Every time I go through something truly awful and beyond my limits of pain and agony management, I get the blues.  I have realized it is a part of the process.  I have been telling myself I need to incorporate it into my expectations; you know, embrace it.

Not working!

I think the very idea of having the blues is that you feel out of control.  At least that is how I experience it.

For me, it went like this: I had the surgery I had been dreading and when I awoke I was told that I was being admitted to the hospital for observation because the procedure took twice as long as normal.  The nurse attending to me in recovery looked bored and irritated, or maybe that was just me…

Anyway, every time I tried to ask a question, she pointed out the doctor had already spoken with me but I had not been coherent.  Well, that’s useful. Why in the hell do the doctors do that?

I was in agonizing pain and she kept telling me she had given me all the medicine she could and I would just have to wait until I got up to my room.

I got to my room and the pain felt like labor: no joke.  They were giving me fentanyl which does absolutely nothing for me. I lost control: I screamed.

I finally got shot up with dilaudid (the bad drug) that works on me.

My doctor came in and talked to me again so I had a vague idea of what was going on.  My anatomy was strange, (no joke) so it took him forever to get in there and now I have a stent and it will need to come back out, etc.

Shortly thereafter, a hospitalist,  (a new noun created especially for  our fucked up healthcare system) came in to see me.  He was not the doctor on my case,  just the floor doctor.  He proceeded to tell me he disagreed with my specialist about my use of dilaudid for pain and to lecture me on being an addict.  I stuck up for myself and told him to call my pain management doctor if he had questions.  The guy was unbelievably rude and condescending.

After he left, they took me to x-ray and I cried.  The two x- ray techs had heard and seen the whole thing and seemed freaked out by what had happened. They congratulated me for defending myself.

I was exhausted from all of this but frightened that the floor doctor might try to come back in or over ride my surgeon’s orders.  So  I called in the charge nurse and told her what happened.  She promised I would not have to see that doctor and that my surgeon’s orders stood.

A note here: I should not have had to do all of this.  I was in no shape to go to battle and in no shape to be judged by some nitwit of a doctor.

I continued to feel really badly, pain and nausea and dizzy, etc. into the next day.  My doctor came by and said my liver enzymes were up but my pancreatic stuff looked good, which was our main concern.

He said the hospitalist would check back in with me later about releasing me.  I said that I did not want to be seen by that person, Dr. M.  I was assured that he had been spoken to and not to worry.

But I did worry.  I felt violated.  I had to be on my guard.  I did not feel well enough to go home, I know myself, and yet, I felt like I had to do battle about that too.

At some point in all of this I just crashed emotionally.  I was alone, my husband had left and I just fell apart.  I started crying uncontrollably.  I didn’t want anyone to notice because the second they think you are “crazy” in a hospital they treat you like a total freak.  I have experienced that in an ER.

So, who should come back in my room but Dr. M.?  He was clearly on a mission to redeem himself.  I told him I wanted to go ahead and stay the night since it was already 6:00 pm and I could not comfortably hold down solid food.  He agreed and was all smiles and light.

After he left, I sort of slumped into the bed and wished I could disappear.  The only bright spot was that he mentioned that one of his colleagues would be on duty the next day.  That was a relief.

So, was this incident totally because I was treated like an addict because I needed pain meds after surgery?

I don’t think so.

Yesterday was my first day at home.  It was rough, very rough.  In other, more enlightened countries, I would have still been in the hospital.  But that just isn’t how we work here.  I was expected to go home after one night and I stretched it to two.  Clearly, I am some sort of wimp.

So, at some point during the pain and utter misery yesterday, I started to cry again.  I felt like despair, in the form of some horrible black cloud, had descended and landed on my shoulder.  I feared it would not leave.

It is the same fear that I live with every day; that I will hurt and struggle every day of my life, and no one will understand.

But today is a bit better.  I am up and bathed and I did my igg infusion.

The black cloud is still parked right over my shoulder.

I still feel shamed and frightened and alone.  I don’t know how else to feel.  My husband is worn out from carrying my weight this week; I can tell.  I have to get moving.

And yet, what if it rains again?

No amount of Prozac or reading or writing or therapy can make the cloud go completely away.  No drug or movie or book can stop the darkness when it creeps in.

I just have to hang on and pray that somehow, I will make it back out into the light.  I have learned the prayer for healing in Jewish liturgy: Mi sheiberach…

I sing it to myself, “Lord please heal me and let me be one in your spirit.”

Amen.

 

 

 

In two days, less than 48 hours, I am going to have a procedure that I have been putting off for over a year.  I am having an ERCP done.

ERCP is where the gastro doc goes in and (this is in the absence of a gall bladder) pokes a hole in your Sphincter of Oddi muscle which is between the liver and pancreas on the biliary tree.

I am looking forward to this because there are little bastards living in my biliary tree.

They have knives and they poke them into me in different ways dependent on their moods.  Sometimes they just hang out in there and apply pressure to the whole area, sort of like a toothache.

Then, sometimes they let up on me entirely and I think they have left the building.

But, NO!  They are just planning an all out attack.  I eat and they all run to my poor forest of bile and start hacking away with knives, screws and whatever else they can find.

One of them, will actually put an arrow in me an pull it in and out, in and out.

I hate the little bastards.  I am hoping the ERCP is the right thing to do.  I have been warned that I could have the opposite result and end up in fiery pain and worse than I was before.

Nice…

No choice now; those bastards have to go…

Watch out you little jerks…you are about to get exterminated!

 

I wish I had a dollar for every time a well meaning person has told me about a supplement that will “increase my immunity.”

I wish I had a dollar for every time a well meaning person has told me that if I would just eat right and lose weight my body would heal.

I wish I had a dollar for every time a well meaning person has told me that I would just let it flow, you know, no stress, I would get better.

I wish I had a dollar for every little offer of help that makes the other person feel better, more secure, about their own health, their own world.

No, I take that all back.  I wish I had at least $150k  per incident.  That would be truly awesome.

I know my friends, family and mere strangers mean well.  I try to be nice; really, I do.

But, DAMN IT, PEOPLE, DON’T YOU THINK I HAVE TRIED THAT STUFF ?

I have been at this chronic illness thing for a while now.  I have read, and read and asked and asked and been diagnosed with some pretty clear cut diseases.

They just aren’t common diseases and they aren’t curable and they aren’t clear cut or kill-me-now kinds of things.

I have CVID: Common Variable Immuno Deficiency.  It really isn’t all that common.  It is a primary immune disease that about 1 in 25 million people have.  It means I do not manufacture all of the immunoglobulins that healthy people do, in order  to protect me against infection and other complications no one yet understands.  I take a weekly subcutaneous infusion of a plasma product called igg that is created from the plasma of many healthy donors (please donate plasma!).  It helps me build up my immune system and stay healthy for a week.

I have Mixed Connective Tissue Disease: About 30-40% of people with CVID will  also be diagnosed with an autoimmune disorder.  This happened to me about six years after my initial diagnosis.  Except, no one told me it was so common and I had to go all the way to Mayo to get a diagnosis.  MCTD is a little bit of a bunch of rheumatological diseases.  I have a little lupus and a little Sjogren’s  and whatever… my joints hurt and I am fatigued.   For this, I take an immune suppressant drug called Plaquenil.

Trust me, I know that is weird.  One drug amps my immune system up and one takes it back down.

It turns out the human immune system is so complicated that medical science is only beginning to understand it.  The parts of me that need the immuno boost are different from the parts that need the immuno-suppressant.

On top of these main concerns I have a lot of other ‘system failures’ or bugs in my programming.  Autoimmune disease, of the kind I have, seems to trigger flares of pain in different parts of the body.  Sometimes they are identifiable and treatable on their own but most of the time the are just bad luck.

Right now I have a type of chronic pancreatitis that won’t give in.  I do not show up on any tests and have spent over a year seeking treatment from three different doctors.  Finally, I have decided to go with a surgical option that might fix it for me.  The down side is that it might make me worse.

So, I don’t want to sound bitchy or whiny or any of those things.  I just want to be understood a bit by you normal people out there.

I did not do this to myself through some strange dietary accident. I wish I was a less high stress person but I do the best I can and seek help when I need it.

The bottom line is; I’m screwed.

Or, Not.

It is all in how you see things.  Is the glass of Metamucil half full or half empty?

I have been learning a lot about living one day at a time.  If I try to go any faster, it seems I fall flat on my ass. I concentrate, as much as I can, on that half full glass of something other than Metamucil.

So, don’t feel bad for me.  Just treat me like you always would.  If I cannot do something or I feel bad, I will tell you.  Otherwise I am grateful for the company and friendship of those who are not freaked out by all my ‘issues.’

 

Sleep

Sleep is elusive.

It is a sneaky lover that only comes to visit unannounced.

Lately, sleep has crawled into my bed early and left early, leaving me gasping in the moonlight.

I always want more.

Every time I think I can control it, with pills or routines or mugs of nasty tasting tea, Sleep laughs in my face and tells me “No.  You can’t do anything to me.  I own you and you know it.”

It’s true.  I am the abused lover here.  On the days after a night time beating, I struggle through.

With my blackened eyes and swollen face and shuffling steps, I lie.

Can there be a truce here, or, better yet, a divorce?

I don’t really know.  I think that would require third party arbitration.

I don’t think they have lawyers for this; just psychiatrists.

 

II. Okay, Ya Got Me

Okay, ya got me. I am down on the mat.

The ref is counting, “1,2,3,4…..

Aaaaaaand she’s out of the game”

It’s ok.

I knew it was coming.

What will tomorrow bring?

Will I pop back up, boxing gloves on?

Or will I stumble back into the ring, with the coach, slapping my face to wake me up and get moving?

No amount of money, no bets or amphetamines can tell the story.

If it wasn’t always up in the air, it wouldn’t be me!

But hey, I wouldn’t bet against me , either!

 

Tis’ the season to go crazy..

For me, it is a very short trip!

I thought I had made Christmas more of a streamlined thing now that my primary holiday is Hanukkah.  No! Silly me!  Christmas is still celebrated in my mixed household and I wouldn’t want it any other way.  It is just that as kids grow and life circumstances change, it gets more difficult to be the mommy with all the responsibility.

I am very aware that I choose to do the things I do.  I am always glad for the outcomes.  In years past, Stan had a bit of Christmas spirit and that was somewhat contagious.  He is fresh out this season so I have been trying to manufacture my own.

But, each new year brings new dynamics.  High-lights for this year include: a re-occurrence of my pancreatitis symptoms (we do not discuss this) symptoms, insomnia, itching all over, whatever…

And.. Hannah is home from her first semester of college and she is sleeping and shuffling around like a zombie.  Samuel is busy.  He wants to have friends over and play computer games all the time.  When I ask for help, he snarls.

Stan is busy.

My aunt is always complaining how broke she is and tired from taking her neighbor places.

My brother is not well so no help there.

My sister is not even in the picture.

And then, out of no-where, my father in law (who we have not seen in almost 20 years), e-mails this morning that he has sent the kids some checks for Christmas.  WTF??????

He lives in Ecuador, with wife number 3.  My kids have never met him.  He was never a father to my husband:   He was an alcoholic nightmare.

So, I hear he has reformed.  That’s nice.  I just have to say, hearing from him this morning was just another way to point out that the world is truly bizarre.  You just never know what is going to come next.  You think things are all quiet and then you hear the tinkle of  glass breaking and the cat running quickly away from the scene of the tragedy.

You think your life is fairly organized and predictable and then ‘boom’ you end up with another disease complication.  Which in turn, complicates everything else in your life.

Right now, I am upright and moving.  I am not doubled over, puking and in mind boggling pain.  This is all good.  I’ll take it.  I’ll take the check from my long lost father in law and cash it.  I will take a decent health day and cash that too.

You have to grab these things as they pass by.  You never know what will come up next!

 

I am broken.

I am scattered across the floor of what used to be a spacious life.

Now I am hemmed in by the cracks and jagged, pointed edges. Wherever I go, there are shards of glass too small to be dug out yet forever a part of my physical landscape…

Cut, bleeding, bruised.. I try to hide all of the ugly, but you know about it.

You know that I am weak and I am frightened.

I cry out for help where there is none at all to be had.

I blindly push against my boundaries, testing them,smile frozen on my painted lips..

Why?

Why do I bother?

That little bottle over there.. It beckons me with its lurid, red, lid. It looks like a mouth: “swallow me” it says.

I would love to attain sweet, sweet nothing: just sleep.

Wouldn’t that be nice?

I promise, promise, promise, I would dream of you.

 

I call this blog, ‘scenes from the immune system wars’ for a reason.  I am constantly in a battle with myself.  My body is in rebellion and I am on the front lines of a war. I am war weary and sometimes I just want to run out of fight.

Sadly, that is not an option. Neither is whining:)

But I do have some perspective these days.  I have been at war long enough to know there will be campaign after campaign and that it will be never ending.  I have to keep myself fit, both mentally and physically, for each and every onslaught.

What I mean by this is:  I must acknowledge my enemy, my missing immunoglobulins, my faulty cells, and the havoc they wreak.  I must be okay with the fact that I am working at a disadvantage here.  I don’t know what all is happening to me on the inside.  The doctors don’t know.  My current diagnosis is “Atypical CVID.” Yeah.  CVID is Common Variable Immune Disease/Disorder.  It is variable by definition, not common, though.  There are one in 50, 000 of us.

It is eating away at my autoimmunity somehow as well.  No one really knows why.

So, that is the enemy.

I have weapons.  I have lots and lots of drugs.  One drug in particular: my infusion medication, Gammagard subcutaneous igg, is quite literally a life saver.  It is a plasma product that I infuse into my belly once a week with four needles. It protects me against infection and seems to help with pain and fatigue.

Without it, I lose the war.

I am infusing now.

But, some days just suck.  And those days used to frighten me.  Yesterday was a suck day.  I hurt all over… every joint, every ligament.  I could not move my eyes in my head without pain.  I was tired.  Too tired to drink water.  But, I made it.  I got all the basics of my life done and I made it.

Today is a bit better.

I won.

I did not let it freak me out.  I just realized, as I must realize, that some days will suck.  I have to take the sucky days with the good days and keep fighting.

I have to take the needles in my belly even though they hurt and itch and keep going and keep being grateful as hell for them.

This is a weird war!  But I am in for the long run.  I may not win but I sure as hell won’t lose!

 

 

 

This past thirty seven hours or so have been nice. My daughter came home from college.  I had not seen her in almost a month.  I am new to this whole, ‘grown child’ thing.  I mean, she is not really grown; she is a first semester college freshman.  But, she is a fledgling.  This had been her longest solo flight yet.

She is doing well and I am proud.  I also miss her terribly.

I still have plenty on my plate at home.  My fourteen year old son is full of challenge, as are the five pets, the spouse and the house and the chronic illness.  But, that special mommy/daughter thing has been missing.

I am a GIRLY GRRL!!!!  You cannot talk about hairstyles with two men in the house!

But, I let her go again.  She went back out into the unknown and took another piece of me with her.  This time she is riding back to her University, ninety odd miles away, with a friend I don’t know, from a drop off point where I did not do the drop off (my husband did). I have let go.

Is it crazy that I took a great big sniff of her hair before she left?  Or that I made her promise to call me when she got to her dorm?  Three times?

I pushed myself, health wise, this weekend.  I wanted to spend as much time with her as she would give me.

As I write all of this I feel like a crazy, over protective, Jewish mother.  I guess I am.  But I am trying so hard to not say much and to not hover over her.

I don’t even call her much.

Why do children, pieces of ourselves, have to be so damned difficult?  We birth them and work so, so hard to raise them, and then we work hard to to let them become responsible adults on their own.

I just pray I am doing a decent job of it.  I feel as though the best parts of myself; my very vitality is in them and no longer in me.  Perhaps that is not a good thing.

Oh well! No more philosophy from this corner.  I long ago crossed into Earth mother territory.  There is no going back!

Bring all the little children and I’ll feed them, fuss over them and listen to their troubles.  I love them all.

Does anyone besides me remember the positive affirmations movement in the late 80’s and early 90’s ? It was so wide spread that it was even parodied on Saturday Night Live.

My therapist at the time told me to do it.  She said, “I want you to write down six positive affirmations, nice messages to yourself, and say them each day, all week long.”  I was supposed to tape them to the bathroom mirror.  They were lame.

It was like, “You are beautiful!” Or, “You are smart and organized.”

You get the picture.  I always felt self conscious, standing in the mirror and telling myself these things.  I was even supposed to hug myself: Gaaak!

So, here we are in the 21st century.  I think we are more jaded as a culture these days.  That isn’t necessarily a good thing, but it’s true.  I know I am more jaded.  I am older and have a tougher skin.

But it turns out there is still some room for positive affirmation.  But, just thinking up some platitudes and posting them on my bathroom mirror won’t work any better than it did twenty odd years ago.  I need to come up with things that are really and  truly from the heart.  Things that I have discovered in my deepest, darkest self… you get the idea:)

I have been seriously trying to change my eating habits. For the last two years, I have been gluten free and alcohol free and coffee free.  You would think that would be enough! But no, it isn’t.  If I want to lose weight while going off and on medications like prednisone, I have to get really serious.  If I want to keep my body moving on the days it hurts all over, I have to get really serious.

So, I joined Weight Watchers online and I started giving myself walking challenges.  This has been helping.  I started losing a bit of weight and a bit of flab.

And then, I started writing down my food and my WW points, after the fact.  I mean, I would guesstimate what I had eaten and make it fit into the points I had available for that day. And BADA BING! I quit losing weight.

Poor, pathetic me!

So Sad. I just cannot seem to lose the weight.  What is wrong with me??

I am a liar.  That is what is wrong with me.  I lie to myself.  I am playing games with myself.  There are no victims here: just me, lying to me.

So, I had an aha moment: I LOVE MYSELF MORE THAN I LOVE FOOD.

That is a new one for me.  Food has comforted me and calmed me and given me something to hide behind my whole life.  But, if I truly love myself more than I love food then there are no more excuses.  All I have to do now is love myself thin.

So, that is my positive affirmation.  It is pretty simple. Every time my hand reaches into the pantry or the fridge I will ask myself, “is this because you love yourself and you are hungry and making a good choice? ”

I just hope I don’t tell myself to eff off!

Well, I haven’t posted yet this week and I am sort of stuck here right now.  I am infusing and I’m too lazy to get up and move.  It could be because I take a boat load of benedryl to prevent reactions…

I am kinda woozy.

Things are generally ok this week.  I have been frustrated with my level of all over aches and pains and fatigue.  I have been pushing myself to walk further and further but I don’t think that is the reason.

I think it is medication based.  I am either getting too much of something or not enough of my go go goo.  Let me be clear: the go go goo is what I am infusing, the Igg drug.  I am on a relatively small dose.  This has to do with the fact that I have a history of major reactions.  My dr. is not willing to push the envelope.  I think maybe I am willing.  I want to feel NORMAL.

Maybe that is way too much to ask.

I just want to have a period of time where I don’t feel like a truck hit me by the afternoon.  The problem with multiple chronic illnesses is: Which disease process is causing the symptom or symptoms?

It is very hard to know.

In better news today I saw my urologist.  She is amazing.  She is actually like a urologist/cheer leader.  Her demeanor is always really bright and she is overflowing with empathy.  Today she said, “You have beautiful urine, honey!”

I told her that was a first for me.  No one has ever said that to me before.  I need to remember that for a compliment to give people, “You have beautiful urine, honey!” Never mind.  I don’t want to look at their urine, do I?

Yesterday I had to take my 14 year old son for his physical.  That was interesting.  Guys have to have their ummmm…. stuff checked at that age.  AWKWARD.

OH well.  I stepped out and “bam” it was done. Poor little dude.

So, these are the ponderings of the final frontier.  Whose mission it is to seek out new life.  To go where no one should ever go.  To babble, incoherently.

Ok, I’ll stop.