Scenes from the Immune System Wars

I do not want to traffic in politics here. That is not at all my intention.  But I do want to share an experience I had yesterday.  It rocked me to the core and left me off balance and a bit frightened. I cannot explain it other than to just tell it like it happened.

First, let me give you some background.

I am a Jew.  I chose to identify this way out of a very long, deep and prayerful process.  I was raised in a mixed family and was a member of the United Methodist church for a major portion of my life.

I have always been a seeker of the Divine.  I am so serious about it that at one point I went to seminary (Presbyterian) and got a degree in it.  I was even ordained for a bit:)

Yet, I was never, ever, comfortable in my own skin as a Christian.  I have nothing at all against prayerful Christianity or against followers of Jesus.

After all, he was a Jewish boy!

But, for me, my comfort zone is the religion and the culture of my father, and of my sister, and that is Judaism.

I am still learning and know I have a lifetime of worship, music and liturgy ahead of me.  I can’t wait!  It feels so good to finally be home.

in fact, I can think of no greater joy than celebrating my own Bat Mitzvah.

But lately, there has been a war on in Israel.  You may have heard about it.

It has stirred up a lot of Antisemitism.  This is something that we learn as Jewish kids (whether you identify or not) to deal with.  I have experienced it all of my life.

But yesterday was the worst.

I have taken to wearing a tiny, gold, star of David necklace.  It is important to me and I like the symbolism.

So I was at the meat counter at my local grocer and was trying to buy some steaks.  The butcher eyed my necklace and then very purposefully walked past me: twice.

There were no other customers.

He refused to wait on me until my tall, Germanic husband came over.  At that point, he only responded (and rudely at that) to what my husband said.  He ignored what I said as though I was not there.

I could feel the hate pouring off of him.

Is this what it feels like to be black in America?

Is this what it feels like to come across the border if you are brown and poor?

I don’t know.

I just know that I felt frightened.  I felt sick.

I felt like I needed to update my passport, like I have been told by older Jews.

“Keep your passport ready so you can get out to Israel if need be.”

So, tonight I light the candles and sing the blessings over the bread and wine.  And tonight I pray for peace.

Peace in Israel.

Peace in Gaza.

Peace in Iraq.

Peace in Syria.

Peace in Missouri.

Peace,on earth.

Amen.

I have noticed that the more I am sick, the more I become invisible to those around me.  In particular, I seem to fade from view in the eyes of my family.

What does this mean? Am I just whinging again?

Possibly.

But, I think there is something deeper at play here. When a loved one is ill and ill a lot, everyone becomes fatigued.  It becomes difficult in the best of times to show loving kindness.  Maybe, it is just easier to let the sick person sort of fade into the woodwork and hope they won’t come out of their cocoon until they are ready to ‘act normal.’

Anyway, that is the sense I get at times.

My husband is a classic example of caregiver fatigue.  He is just worn out. He is tired from work and tired from life and he doesn’t have anything else to spare. I know he cares about me but I also know he doesn’t have the bandwidth to be actively involved with my health or issues.

I get that and I don’t want to be a burden.  So, I try to go away, lick my wounds and hope for the best.

If I need medical care, like the E fucking R, I go alone.  There is just no point in hashing out the expectations of a strained marriage in that situation.  It is much less stress on everyone if I am alone.

The flip side of all this is: 1. I get very lonely.  2. I feel like an alien in my own home.

I know there is plenty of flip side for my husband and my kids as well.  They have to deal with a mom  and wife that is unreliable and often incapacitated without notice.  I will be going along, trying to pull my weight  in the family, and then ‘BAM.’  The next thing I know, I am flat on my back.

These are just facts.

I just wish I knew how to stay visible.

I occurs to me that this invisibility is what must happen to elderly people.  All of a sudden, people look past you.  They ask questions a little too loud or over your head, just in case you are too out of it to understand.

They do this even though you are right there and inside you are screaming, “I AM RIGHT HERE; THE SAME AS ALWAYS.  PLEASE DON’T TREAT ME ANY DIFFERENTLY.”

It is an odd sensation.

The result is the armadillo effect.  The more often I seem to become invisible to my loved ones, the more often I find myself withdrawing from them.  It hurts less that way.

I curl into myself, like an armadillo does, when threatened. I become a little, armored ball that cannot see outside itself and is afraid to unroll, lest I be caught by my tail or expose my vulnerable belly.

Surely this is not a healthy way to live: And by healthy, I mean mentally.

Yet, I don’t really know what else to do.

I am reminded that armadillos are ugly, carry diseases and are dinosaurs.  That is not a very complimentary description of myself.

I guess until I learn a better way, I will just have to learn to love armadillos.

I hope my family can learn to love them too.

This topic came up on one of the Facebook groups I participate in.  This particular group is formed of persons ( and family ) of people who have CVID (Common Variable Immuno Disorder).

From what we are learning,  CVID probably has some genetic links. However, we were discussing what ‘triggered’ the problem to become so severe that we sought out a treatment such as IGG replacement and were elated to have found it.

We also know that CVID opens the floodgates for Autoimmune diseases.  In fact, it really isn’t well understood how failure to produce one or more immunoglobulins causes so many problems: but, it does.

We all agreed that the link to stress was there and continues to be there, especially when your body is not behaving, but that it is not a simple 1:1 equation.

I wish some doctors knew or acknowledged that.

I have found over the years that there is a wall in dealing with doctors who cannot diagnose a patient and cannot completely dismiss them: for whatever reason.  Many times, these are the doctors who I believe have a hard time admitting something is just out of their league.  Invariably, these are the clinicians that blame almost all of my problems on “stress” or being too “high strung.”  (And yes, those words have come out of the mouth of physicians in my presence…. I am just “too high strung.”)

That is a sexist, stupid cop out.

I seriously doubt many men are told they are high strung.’

Yes, stress causes illness in our bodies but we are only beginning to understand how in a physiological way.  The marriage of our minds, spirits and bodies is a pretty big mystery.  A good doctor,  in my opinion, should acknowledge all of that but not abandon a patient there. They should strive to see the individual as a whole, with parts.

Idealistic talk for difficult times.  Doctors are stressed themselves and often over worked, over booked and drowning in the logistics of their own fight to maintain a small business or deal with the bureaucratic tide of paper work and journals and what not.

So, I don’t have a solution.

I think maybe having practices where mental health is integrated into physical health would be a good start: i.e. have a psychotherapist that works with your immunologist or oncologist or whatever.

Instead, we have a very patch work system of availability to mental health care.  Also, it is still stigmatized.

Where did I get off on this whole subject?  I don’t know!  But, I know that I don’t “get sick on the weekends”  (read previous blog) just because I can. It is a series of unfortunate events that are beyond my control yet may look blindingly obvious to anyone on the outside looking in.

I guess that is it.

I am tired, so very tired, of feeling guilty for being sick.  I try and try to lay that guilt down but it follows me like a ball and chain.

Moms in the prime of life don’t get sick a lot.  Certainly, they don’t have chronic, unrelenting issues.

But yes, and I do.

So I manage my stress the best I know how.  I go to the shrink lady for medications for my head and I see the therapist from time to time.  I try to take care of myself in a loving way.

That is all I can do.

That is all any one us can do.

I am sure that stress can make us sick.  But, I don’t think stressing out about stress making us sick is much help at all.

Don’t sweat the small stuff: It is all small stuff!

 

So, long and icky story short, I was violently ill to my stomach on Friday last.

I was hoping I was cured, so on Saturday, Stan and I ran away.  We had a luncheon out and went shopping and then got a hotel room.  It was all very relaxing.  I actually fell asleep during the movie we rented.

The kids kept calling because our internet was down.  It was down forever and a day because ATT is a bunch of clueless dumb asses. I take that back, some were nice dumb asses but some of them had no clue.

Anyway, I fell asleep and it was blissful.

For some reason, I woke up with asthma.  I used my inhaler and that set off the pain in side like crazy…. Crazy!

I took pain meds and tried just sitting up.  It would not go away.

So, the conclusion of our lovely date night was Stan taking me to ER at Seton NW which was near the hotel.

They were really, nice.

They released me and it got worse and worse and worse.  I called the gastro doc who is doing my liver biopsy and he said to go to his hospital and get admitted through ER.

I had Stan drop me off.  I knew it would be icky.  They have hypochondriac written all over my charts there.

Long story short, I was admitted but treated like I was a problem child.  I was told ‘no iv meds for pain.’

The upshot was my CT from the other hospital showed I was terribly constipated.  Why did they not tell me that?

It’s MY GUT!

ON Tuesday, I had a four hour test for gastric motility.  They gave me radioactive eggs and toast and juice and then,  every hour, on the hour, they looked at  my stomach with a special Doppler machine.  It should show the progress of food through the stomach and down to the intestines.  Mine did not move at all.

I have severe gastroparesis.

I am now on a diet of mushy stuff.

Here is what bothered me most: My brother and my husband both said I usually get sick on the weekends.

What is that?  What does it mean?  Do I try to have gastroparesis?  Did I know I had it and whatever else is causing my gastric issues?

That made me feel like crawling in a hole and dying.  I ‘get sick’ on the weekends because I CAN’T GET SICK DURING THE WEEK.

I feel like a loser x a loser x a loser.

Someone just let me out of here please.  There has been a mistake.  I got the wrong body or something and I need an exchange.

Friday is the biopsy on my liver.  I don’t want to go.

I am scared of it.

But, hey, it’s the weekend.

Party ON.

What Am I?

Patient, Person, Human Being through the days of her life and praying she doesn’t fall down.

Who Am I?

Mother, Wife, Sister, Niece, Friend, Trying hard to please and yet save a corner of myself for me.

Where Am I?

Suburban Oasis in the hot, hot summer, crawling like an insect from air conditioned space to air conditioned space because my body no longer tolerates the heat.  My favorite summer activities are just a whisper–no more.

What do I Want?

I don’t know anymore. Maybe health and bills paid on time and in full?  Who cares about the bills?  Health would be fine!  No, I want my kids to be healthy and happy.  The rest is gravy..

Grave-y. Grave-ee. Grave. Grove. Grovey.. Groovey – Grooved

Grooved like these new lines on my face. They are there for a reason.

What Am I?

A Survivor.

Who Am I?

I am the only one like me…

Where Am I?

In the right place.

Why am I here?

I haven’t the foggiest.

But as long as I can write….

I have myself.

Ok, I am not going to talk about depression or my aunt today.  Sorry for being so repetitive the last two posts…

I guess I just write about what is going on with me.

So, here again, this is the latest.  I suppose others with chronic illnesses can identify with this:

I have no veins.

I mean, I have them, but they are full of nasty scar tissue or they blow up before they can be used anymore.

I was on IV therapy for eight years after my initial diagnosis with my immune system disease (CVID).  I now do a subcutaneous infusion into my tummy with four needles across the front every week.  This is much better.

However, all of those sticks for IV’s that lasted all day, plus all of the ER visits and hospital stays, has wreaked havoc on what were never great veins.

After one of my surgeries this year, I woke up with a IV in my foot.  I had bruises all over in the usual spots so it was easy to figure out what happened.  It was just strange.

The last few weeks, whenever I have been in ER, or in a lab, no one can get any blood.

This is discouraging.

So, over the course of the last two days, I have been the office of the liver specialist twice.  Yesterday the phlebotomist could not get a drop out of me and gave up after three sticks.  I was getting a little woozy and had to sit a bit and drink some water.

She was actually in this morning, on a Saturday, so I went back in.  Luckily, she managed to get enough to drip out of my two AC’s (the big vein in the crook of your elbow area) to fill three of her four vials.  She said that would just have to do.

I try to be cheerful, chatty and tough about the whole thing.  I mean, what else can I do?

I did come to the conclusion that between the bruises from needle sticks and my weirdo immune system rash, which has produced disgusting scars, I need to cover my arms when I get ‘dressed up.’  I have a lovely wedding to go to today and I hate to subject anyone to my horror show arms.  I bought my first ever shrug…

Try explaining the clothing term, ‘shrug’ to a guy!  I think I will be ‘shrugging’ a lot in the future!

What I need is a port-a-cath.  That is a direct line into into a vein in my chest that is implanted by a surgeon.  The problem is that it runs right next to the heart and if it infects, it can lead to death.  Apparently this can happen rather often with people who have damaged immune systems.

Yeah? Well.

I am pretty tired of all the PRICKS!!!

I mean, STICKS!!!!

Really, though.  I am not a vein person.

 

 

The last couple of weeks I have been trying to ignore the pain in my side and the interstitial cystitis (peeing is like shooting hot lava out of my crotch)  and just muscle through.  I need to be on duty here at home. Also, I have found that when pushed, I can fake it pretty damned well.

However, as many of you with a chronic illness know, there is a very fine point between pushing yourself, faking it and falling over the precipice into being too sick to function.

Wouldn’t it be nice if we came equipped a warning light?  I think it should be just like the one on my car’s gas tank.  It should show when I am getting low on fuel and then have a graphic aid that shows where the tank is located.

Interesting point about how my brain works: I can never remember which side the gas tank is on, even with the graphic aid.  In fact, when I look at the graphic, I get more confused.  I only get it right if I just do it without thinking.

Is there a metaphor here?  A lesson?  Hmmmmmmmmm.

My  teen aged son is suffering from clinical depression.  He has been treated for this before and has had problems related to his sleep cycle his entire life.  Apparently, having mono this spring, coupled with a huge leap through puberty, has upset his chemical balance horribly.  I should have been on top of it sooner.

He is miserable.

Chemicals and family genetics that predispose him to depressive illness aside, we have had another tough year.  I have been in and out of the hospital and that has been rough on him and the rest of the family unit.

In addition, caring for my aunt and  taking into account the relationship he has formed with her, are also factors.  For the last school year, she has picked him up from charter school on a number of days.  I think they have both enjoyed it.  I have felt like it was a great chance for my son to bond with the only remaining “elder” we have.

Now, she is on the decline, and he is having to live through that experience, just as he has done, with three other grandmas, in the last four years.  It’s too much for a fourteen year old to process. I don’t care how much therapy you go through; it’s tough.

Hell, I can’t process it either.

I feel like I am a calloused bitch when it comes to my aunt.  I can’t ‘feel’ anything.  I am just numb.

Obviously, my son is feeling things.

So, Onward and Upward.

Muscle Through.

I am really trying to get some muscle tone back into my physical body. I have been doing arm exercises and tummy exercises because my body doesn’t look right.  I mean, I know I am fat and overweight and all that but usually my body is firm.

Firm has gone bye bye.

Maybe part of this stage of life is about building psychological muscles as well.

I can’t afford to go all flabby on the inside.  I have to keep my head up.. keep marching… so the rest of my crew can see my flag… jauntily waving… even when things suck.

That is actually a good thing.  It makes me proud to be me.

I am a good flag carrier

Go, Me!

 

I think life is truly a merry-go-round.  It is also what we make of it.  For me, things are the same or, if you want to frame it a certain way, worse.

My liver area hurts still.  My aunt nearly killed herself with booze and God-knows-what last week and my husband and I are her care-givers.  She is 79 and a mess with cardiac failure that will get her sooner rather than later.  She has a great deal of depression and has not wanted to be around since my mother, her sister, died four years ago.

I feel battle worn and weary in that department. We have lost so may ‘grandmas’ the last few years, and participated in everyone’s care, when no one else wanted to do the dirty work.  I am just flat.

Of course I love her and don’t want her to die.

My son’s depression is off the charts and we had an emergency call to the psychiatrist this weekend.

On and on and on and…on.

But, good news! I am cooking on my fiction piece and that is changing everything.  I figured something out: when I used to write a lot of fiction, I used it as an escape.

DUH.

So, I am doing that again.  It is a healthy obsession.  I have to let my mind go and just write and riff, and do research!

I loves it!

So, watch out world:) Teen fantasy fiction award coming up and ……

A MOVIE!

You see what I did there, right?

I have been watching way too many episodes of “Orange is the new Black.”  I finished season one late last night.

I have to say that I identify much too strongly with that show.  Perhaps that is a sign of depression or a sign of collective misery or something.  I don’t know. I just seem to love the drama.  Which is interesting in and of itself, because usually that sort of drama is a big turn off for me.  Weird.

I don’ t feel like me just now.  I feel like a husk of collected atoms that used to comprise the person I called me.

I am still struggling with the pain and hell of whatever the fuck is happening to my liver or not my liver.  If it isn’t my liver, it is just pain for no reason.  If so, let’s get on with it and send me to the loony bin where I belong.

Put me in the “Shoe” as they call solitary confinement on the show.  While there, I can think about all the ways I have done wrong and maybe come out reformed.

Or, maybe they will send me to the rooms with the special leather strapped beds.  I dunno.

Either way, I am there, with those women, in that make believe show about a prison.  I am an inmate.

I had a disturbing looping nightmare the other night.  My father, who has been dead for twenty years, was my chief confidant in life.  In the dream I am trying to call him from a pay phone.  I can hear him come on and pick up the line but then that voice cuts in “This is a call from a federal correctional facility, please press one to continue”
And I hear my dad’s voice and he says, “I can’t, baby.”

I had a friend who was in the federal pen for seven long years.  I stayed in touch with him.  I tried to always answer his calls.  I know what those calls are like.  They are limited to fifteen minutes in real life.  Also, the inmates can only use the phones at certain times of the day and certain times of the week.

The TV show makes it look too easy.

My subconscious, it seems, knows the truth.

I need to make a phone call from out of my cell and I just don’t have a number of where to call or a name.

I’ll stop now.

 

So, today is the day.  I am officially another year older.  As my dear friend and beloved mentor used to say, “It beats the alternative.”

She made it to 71 despite all of her health problems.

I am keeping her advice in mind today.  The last thing I want to have is a pity party for myself.  But I do have to admit to being a bit downy in the dumpsies.

At this point, after nine hospitalizations in six months, four surgeries and four removals of surgical doo-hickeys, I am still not well:   That makes me want to curl up and just sleep until it is over.

I can’t do that, obviously.  Besides, I have another avenue to explore with yet another team of doctors.  This is what they mean when ‘they’ talk about not giving up.

The next stop: Katie’s liver.  It seems that all this pain and ill health may not be my pancreas at all.  Maybe it is my liver, slowly giving way to my immune system’s melt down.  I won’t list the symptoms, here.  Let’s just say, it’s not nice.

I have one doctor who seems determined to keep looking into this and is going to refer me to another teaching hospital.  This week I have been gathering tests and evidence and my own research into the problem.  He called me on a Sunday, (nice guy!) and told me to fax it all to him tomorrow so he can look at it and see what our next step should be.

I really, really appreciate that.  But I also know not to hope for too much.

Where is God in all of this?

Frankly, Scarlet, I don’t know.

I have faith that there is a God but I don’t think that God is really into helping me out just now. I have to walk this road alone to wherever it leads.

I could really use some super natural strength because I am completely out of my own kind.  But, there is no choice but to put one swollen foot in front of the other.

Again, a depressing blog.

I feel badly about that but I just cannot do any better.

There are bright spots.  I love my family and the new dog and lots and lots of things.  I got to drive a new CRV today ( a loaner while my van is back in the shop) and I really, really liked it,

I am such a car freak!.

So maybe I will hit the open road and drive until I am out of gas.  That is a pretty apt metaphor for my life just now.

Just drive…….