Month: August 2014

I am really excited.  I have been working hard to revamp my medical team.  Frankly it is hard work and it feels pretty risky.  But, it is work that has to be done in order to keep moving forward; and forward is the only acceptable way to go.

So, I have a new Immunologist. He is young and earnest and I think he will be fine.  He is much, much, closer to home and I think that will make life easier.

I have decided to quit running from gastro doc to gastro doc and just stick to the one who seems the most helpful.  He has been referring me out to all of these other doctors and I appreciate that but I think I am done traveling to Houston for surgeries. And I am proceeding with a compounded drug that should help my digestive tract out tremendously.  I have my intestines crossed, at any rate.

I am also seeing a general surgeon about the possibility of having my stomach wall surgically numbed.  Who knows?  Maybe that will do the trick?  I think it is a weird idea since the pain is on the opposite side from my stomach, but what the hell?

And, on a more personal note (how can this blog get more personal?) I have a new shrink lady.

I had to do that because my lady quit her practice and I found out that she subsequently died.  So, seeing her is no longer and option… at least not on the physical plane. Or, as my dad would always quip when learning of a death, “Was it serious?”

I imagine it was.  I was shocked and saddened to find this out from the new shrink lady.

So, the new lady has tons of new and wonderful ideas for me.  She affirmed what I suspected; my former and now deceased shrink lady had me WAY OVER MEDICATED!

Good to know…

Also, this new woman is smart… very smart.  I like her a lot and think she is going to help me get my neurotransmitters firing on more pistons than they have been lately.  That is good news.  I thought maybe they were permanently misfiring. Truly.

And, I think I am doing better in general these days.  I have had fewer bed bound days of late. Why is this?

I don’t know.

I hate to even write it for fear I might jinx it somehow.

What I do know is that I am done with the E fucking R.

My insurance company has called and upbraided my internist about my ER trips and she in turn upbraided me.  I think that is a breach of confidentiality.

It made me very angry.

But, no way to deal with it but to move ahead: Upwards and Onwards as the late Jeremy Brett (best Sherlock Holmes ever) would say.

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!