Scenes from the Immune System Wars

October is breast cancer awareness month.  It is pink and boobies all over.  I think that is great.  We all need to be reminded of the presence of our breasts.

Personally, I tend to notice mine a lot.  Really; they are lumpy and they scare me.  My mom died of not one, but two kinds of breast cancer.  Her mom, my grandma, also had breast cancer, before she had a few other cancers.  Both of them lived until their late 70’s.

So, I am a good girl and I put the twins in the booby smasher every year and get them checked.  I have been doing this since my twenties.  I have had biopsies done before; one in my late twenties and one in my mid thirties.

I think I am about to get another.  My mammogram came back ‘inconclusive’ and the doctor wants me to go in for an ultrasound and a diagnostic mammogram.  When she did my exam the other day, she kept saying, “hmmmmmm, ohhh, and hmmmm.”

This has me feeling kind of reflective and weird.  I have known I had a new lump but I did not really want to report it for a few months.  Why did I do that?

I have felt overwhelmed.  I have been thinking, illogically, that I cannot have something else.

That is of course, stupid. A. I probably don’t. B. If I do, it is likely curable; just nasty.

So, here I am in no girl’s land: waiting for the next step.  I have to make my mind go blank.  I cannot go around thinking about my boob.  I cannot contemplate the fact that people with my host of immune and autoimmune disease are much more likely to have cancer…

I want to run to the radiology place and say, “Here I am.  Look at my boob right now and tell me what the deal is!  I will not wait!”

But they don’t actually have an appointment for a couple of weeks.  I will try tomorrow to move things up.

The deal is I should know this game by heart now: NO CONTROL.

Life just veers around and takes you along for the ride.  Maybe life takes your boob because your cells do something weird in your body and it is called cancer and that sucks.  I don’t know.

Maybe you miss that bullet and you wait until the booby smasher comes around again next year.

I dunno.

To Breast or not to Breast?  That is a silly question.

Think of all the weight I could lose if I got rid of ’em?

Ha! Take that you stupid, lumpy boobies!

 

I have been guilty of late. Guilty of telescoping my life down to my problems and worries.

I instinctively know this is wrong.  I have never liked thinking small.  It makes me depressed.

I have never liked it when my animals chase their tails for too long.  I want to help them out.  But, usually it’s too funny to stop.

But with me, it’s different.  If I get lost in chasing my own tail or the tails of those around me, everyone just gets crankier.

Suddenly it seems there is no way out; no way up.  We are all swirling together down the giant toilet bowl of life.

It takes a lot of work to stop that downward, sucking spiral.  I have to literally hit the brakes.

Last week it became blindingly apparent to me that something, some of the stress in our lives, had to go.  I did not know what or where or when but I knew I was cracking up.

I also knew that my cracking up and my husband’s cracking up and job loss was doing our son in.  He was fighting just to keep his head up.  He has been depressed, anxious, missing school, in the hospital, at the therapist and the psychiatrist, for weeks and weeks.  And, I have known, deep in my gut, that our stress was causing his.

That knowledge made me sick.

A family is a system, right?

Our system has been through hell the last few years.

I knew we had to make a big change.

Over the last months I have caught myself fantasizing about teaching my son at home.  I have been a teacher for over twenty years.  It is what I was born to do.

For the last three years, I have been sidelined by my health.

I kept asking myself, “could I, should I, homeschool?”

There have been lots and lots of voices saying “NO!”

These voices were worth listening to.  I didn’t want to give my son an easy out.  I didn’t want to overburden myself when I am already sick.  I didn’t want to possibly cheat my son out of any experiences he needs to grow and mature.

Finally, this last week, the voice in my head saying, “Do it, Do it, Do it! ” won.

I can do this.  We can do this.

I have a lot to offer him.  I realize I cannot offer all subjects so some will be taken online through University high school programs or tutoring.

Above all: There will be no more sobbing and screaming and pulling and yanking.

There will be: Peace. Interest. Intellectual Stimulation and Personal Growth.

I have the tools.  My son has the thirst for knowledge.  So far, he is happy as a clam with what we are doing.

I am not an easy teacher!

He has a five page research paper that started the day we decided to do this.  He has other assignments and responsibilities as well.

The goal is to love what we are learning.

My greatest hope is that we can travel and learn together.  He wants to see the Smithsonian and go to all the museums in NYC.  I am down for that!

I figure it is only a few precious years here.  He is already 15.  I am going to milk this thing for all it is worth.

It is a big place out there: We are going to explore it.

 

I really do.  I hate pricks; specifically of the needle kind.

Let me be clear, I am totally cool around needles and don’t have a problem in the world with doing my own infusions every week (which requires four small needles that I insert across my belly and tape down).  I have done home allergy shots over the years as well.  It was no biggie.

I have never minded blood draws or IV starts or any of it.  I am always;  Ms. Oh-So-Cheerful when the nurses are poking around to get at an IV started, even when they have to do multiple sticks.

But I think I have finally cracked.  I can’t take it anymore.  Needles are what they are: they are little, pointy pricks. They are cruel  and they make you bleed.

(I don’t hate all pricks, but I won’t draw that distinction here.)

When I was on IVIG (Intravenous Immunoglobulin )  every month, the hunt for a vein good enough for eight hours of medicine was a tough one and I know now that some of the medicines that were  put in my monthly IV’s were vein killers.  I took a lot of Benedryl and Promathazine  right in the IV, undiluted, because that is what my nurses did.  Finally it became too difficult, so I switched to the subcutaneous method of delivery I use now. The idea was that my veins could “rest” and would somehow be fine.

I had begged my doctor to give me a port a cath, which is a central intravenous line that is placed by a surgeon and has an open outlet so you can have access to a vein quite easily.  Many people with my disease get a port but my immunologist at the time refused to let any of his patients to get ports because of his concern about infection risk. My rheumatologist is in agreement and says that people with my disease spectrum almost always end up with infected ports.  This is really scary because the actual vein they use runs next to your heart.  I understand their perspective and have put his off basically as long as I could.

However, I have just come to the road less traveled.  I can no longer provide blood for lab work.  Before a minor surgical procedure this week, it took two hours, nine sticks and five people to get an IV to stay in.  The rest of them that were successful, blew out in seconds.

During my last ER visit, I waiting four hours for an IV and was finally given one through the groin area by the doctor.  It worked but was kind of dramatic.

I cannot count on my veins to cooperate in an emergency.  I will have to have a pic line; which is an IV placed along the heart (just like the port but temporary) or another one through the groin.

I feel like I have been assaulted.  I feel like a piece of meat.  I feel like a freak.

I feel like the patient they all go outside the door to whisper about.

I have to convey this to my doctor.  It is time I got a port.  I cannot do this anymore.

I have had enough pricks.

I hate pricks.

” I think it is possible that most of your issues are from the neck up.”

This is what the gastroenterologist told me the other day after surgery. Generally, he has been a nice and well balanced guy.  However, he has been unable to fix my problem.  I must say, he has been more resourceful than most but  is obviously frustrated, so thus his clinical conclusion, “you are crazy.”

I don’t appreciate this.  I also know better. I was told I was crazy for twenty years before I was diagnosed with CVID.  After having three sinus surgeries in a period of five years and being told a. I was a princess.  and b. (by another doctor) that I had an incurable infection. and c. I needed an immunologist but there wasn’t one in Austin.  I was finally diagnosed with low to non-existent immunoglobulins and got better with treatment.  The jury is still out on whether to call it CVID or SCID.  I don’t know or care.  The stuff works. I no longer have sinus infections or pneumonia.

I do, however, have the disease progression of a person with a primary immune disease.  That is, all the other parts of me are falling apart.  In 2011, I was diagnosed with a connective tissue disorder and since then I have been coming apart at the seams with a whole menu of things.  This is not unusual when taken in the context of people with primary immune disease or CVID.  But, very few doctors know how to treat a patient with this underlying condition or how it even works.  Even the best doctors don’t know much because it never, ever, follows a straight course.  It is different in every individual.  Instead, it is mostly shrugged off as ‘one of those things crazy people get,’ or ‘not as bad as she says’.

I have had upper right quadrant gastric pain on and off but mostly on for three years.  It began when I had an allergic reaction to the drug Cymbalta.  Cymbalta tried to eat my liver and put me in the hospital with sky high liver enzymes.  Since then, I have been told I have a fatty liver and fatty pancreas and yada, yada, yada. The assumption is: why wouldn’t those parts of me be fatty?  I am, after all, fat.

Here is the catch… I never had those issues before the Cymbalta incident.  Something happened to me then.  I know that.

However, that is a bygone.

Just like my gallbladder;  That is also a bygone.  I had it out when I was 35.

Since this past January, I have had five ERCP procedures.  These are attempts to open up my biliary duct and pancreas and let them drain better.  There are huge risks associated with these procedures.  However, I have been  desperate enough to try it anyway.  Several of them have worked well.  During the ERCP, the surgeon places a stent either in the biliary duct or pancreas and the stent lets the bile flow freely.  Apparently, each time, I have had a back up of ‘gunk.’  Also, my biliary tree is ‘tortuous’ or not well formed, so it is difficult for it to work.  This is all per my understanding.

Yet, despite all of this, when the stents come out, as they must, I have the problem again and again. I have tried diet and exercise and YES! I see a therapist and a psychiatrist and I do all I can to keep my head on straight. Both of the mental health professionals I see have confirmed I am no crazier than I should be.

My doctor’s last little ray of hope is that I have a gallstone that is tucked away in a duct no one can get an  image of and that is causing all of this.  Who knows?

All I know is I had the surgery again on Thursday.  The doctor saw me on Friday in the hospital and repeated his latest idea for the fifth or sixth time that, “it is from the head up,” and then released me.

I feel belittled and sick and in pain. The pain is worse today and I should probably go get an x-ray to make sure the effing stent has not migrated, which is a real danger.  However, I think I would rather not go.

I don’t want to spend the money.  I don’t want to get poked nine times to get an IV in and I don’t want to be told I am crazy.

Oh, and God forbid I have an anxiety attack as I did last Thursday in ER.  The doctor used that as part of his ammunition to prove his point about the crazies.

I am tired.  I am tired of being in pain and being alone in pain and being told I am crazy.

If this sounds like one, long, whine. I apologize.  Please skip it.  Don’t read it.  Unread it if you need to.  NO comments necessary.

 

 

I usually keep my nails very nice.  If possible, I have professional manicures done, in gel, because it can withstand anything and often lasts for several weeks.

It makes me feel as though I am put together somehow.  Even if the rest of me looks and feels likes dog poo, the nails are an outward sign that I am OK., I have myself under control.

In the last few months we have been in money saving mode so I have been doing my own manicures.  I have gotten better at them.  I went on YouTube like everyone else and watched a how to video.

But lately I have been swimming in a rehab pool and learning a great deal from the simplicity that is the warm, welcoming water.  This has been life changing for me.  I do all I can to never miss an appointment and work- out session.  I feel as though these work outs are holding me together just now.

The consequences of this new obsession are more flexibility and sore muscles, as as well as ruined nails and the occasional hang nail.

Hang nails, I believe ,are a symbol of something else entirely.  The physical hangnails I can take care of with money.  I just have to go back to the nail salon.  I finally caved in and did that.

So wonderful!  I look down at my hands and there is order.  No hangnails.  Just beautiful regularity and a perfect 10.  Don’t ask me why this is so important to me: I have no idea.

Okay, I lied.  I do have an idea.

Hangnails are a physical manifestation of my inner imbalance.  Inside of me there are many hangnails just now and I desperately want to chew them off or cut at them with sharp scissors. Unfortunately, I can’t reach them.

This is why I obsess on my outside.

I look at myself in the mirror and I see all of the hangnails.  I can fix the ones on my hands but I cannot fix the lines near my eyes or the way my arms look at 49.  I cannot seem to lose weight and my tummy is too round.  I can go on and on berating myself for hours.

I am not nice to myself.  I am angry with my body.  It has betrayed me.  I don’t feel like it even belongs to me anymore.  The endless aching muscles and shooting pain and fatigue are definitely not mine.  They landed like space aliens on me several years ago and have taken up residence.  I am ready to do anything to be rid of them. Each one is a damned hang nail unto itself, irritated and irritating.

No one outside this screwed up body of mine can understand what I see in the mirror or what I feel like on the inside.  Nor, can I do that for them.

But, we have to be gentle with one another, don’t we?

We should always assume that the nail biters are biting for a reason.  And the ones with the perfectly manicured nails might be giving us a clue to the chaos that lies just beneath the surface.

We all have irritated pieces of ourselves that we cannot reconcile to the whole of us.

It is in my nature to fight these things with anger.  Perhaps it is in another person’s nature to fight these things with aggressiveness. I don’t know.

I just know we all have hangnails: within and without.

I need help with mine.

Please remind me that I cannot tear them all out because they are a part of me.  I will try to do the same for you.

Maybe, together, we can learn to love all of our jagged, hanging, bits of self: Even the ones we don’t like.

 

Do you ever get the feeling that your life is spinning so, so fast that it is actually slow?

I think of it like the rotation of the planet or something.  The earth is spinning so fast that we don’t even feel it.  Life is sort of the same, I think.

It makes me think of the old Steve Miller Band song, “Fly Like An Eagle”

“Time keeps on slipping  into the future/ time keeps on slippin’ , slippin, into the future,

I want to fly like an eagle, to the sea.

Fly like and eagle

Let my spirit carry me.”

Kinda trippy mid ’70’s stuff , but the older I get the more sense it makes.  (I just want to say for the record, I was eleven years old when that song came out.)

It isn’t a new idea, the thought time isn’t linear.  It is probably a rounded thing, a parabola or according to the great Dr. Who; “timey wimey wibbley wobbley.”

I believe this to be true.  Many days and nights I feel as though I am a hamster or some other small, stinky rodent that travels a wheel over and over, hoping for treats, and yet seldom getting anywhere but back to where I started.

Or maybe I am remembering past lives and my spirit self has actually done all of this living before, in other times and places.  I have often wondered if God is not the Great Recycler.

I can’t imagine God being wasteful.  After all, our souls are here to learn.  Perhaps we have to learn and learn again, much as the Buddhists believe, in order to move on to a more elevated plane of existence.

Just in case you are wondering, dear reader, I am not smoking anything while I write this.  I am infected, but nothing else.

I am contemplating another surgery, but hoping to put it off.

I am frustrated as hell with several things in my life that I cannot control but nothing else.

Time just keeps on slipping into the future, but nothing else.

It is all just ordinary in its extra-ordinariness.

“I want to fly like an eagle, to the sea. Fly like an eagle, let my spirit carry me.”

That line makes more sense if I re-write beagle for eagle.  I can actually visualize myself as a beagle.  I was raised by beagles.  We had two when I was growing up and they were my companions. They are much more closely aligned to my spirit self than eagles.

Beagles are bull headed, sort of funny looking, fiercely loyal, and they really love to howl and dig.  They have great, floppy ears and soulful eyes. If you tell them to do something, they consider it and then stick their tails in the air, not unlike cats, and go the opposite direction.

Yes, I much more beagle than eagle.

And the thought of flying, as a beagle, to the sea, gives me real pleasure.

So, as the world spins on and on and tilts out of control; particularly my little corner of it, I think I shall amuse myself by thinking of flying beagles, spirit beagles, heading out to sea.

And as those packs of tri-colored hounds make for the waves, my spirit; obstinate, floppy eared and loyal to a fault, shall soar along with them.

 

 

 

That is a totally random title.  I only wrote it because as usual, the cat is on the table, helping me work.

The only true tidbit is ‘little boy blue.’  I have been doing a lot of thinking of late about the nature of public education in reference to my son.  I am wondering if I have what it takes to home school him.  I know I have what it takes in the academic way.  But do I have what it takes in the energy department?

Hell, I don’t even know if it is the right thing to do?  Just thinking….

Well, I made a very reluctant ER trip this week.

My side is achy again.  I am having pain in the old spot.  It got really, really bad on Tuesday night and I folded.  Between no sleep for nights on end and pain, I just couldn’t take it.

Sort of odd, I keep having a low bilirubin count.  They also found an ‘artefact’ on my CT scan.  It could be an air pocket in my biliary tree area.  Or, it could be sludge….

I vote for sludge, just because it’s me!

I have a great, new idea though.  I have decided to tell the specialist when I see him on Monday that I have figured out a permanent fix for my crooked bile duct….

Put in a straight PVC pipe!

Or, rubber.  Or, metal… Or whatever.  Just bypass the crooked one that is in there.

It stands to reason, to me at least, that I am having this trouble because the biliary duct is “S” shaped instead of straight.  I mean, we know that now.

It would also stand to reason that I feel better when the stents are in because the stupid-assed thing can drain then, right?

So?  WHY NOT FIX THE MOTHERDUCKER???

I realize I am not a doctor and therefore know nothing.  But, crap… it IS my body after all.

Last time I saw the specialist and asked him why I improved with the stents in there, he said, “it could be psychosomatic.”

I wanted to do him physical harm at that point.

He is a nice person so I didn’t.  Besides, I am sure he is faster than me.

So, Monday we meet again and I have questions.  Lots and Lots of questions….

I am sure he is sick and tired of me.  I don’t blame him a bit on that one.  I am sick and tired of me too.

But, my baby girl is coming home from college this weekend and I just infused my go go juice (igg) so I am going to have a good weekend.

Monday will get here soon enough!

To one and all I say, “Shabbat Shalom.”

Peaceful Sabbath.

 

 

I am mother.

I am wife.

I am niece.

I am sister.

I am aunt.

I am not much of anything at this point.

But, it doesn’t really matter anymore.  I do my thing.  I care for others and I fall asleep.  I go to the store and buy the groceries.

I try to keep myself facing forwards at all times.

No time to stumble.

I have to lead the little army although I am just a tiny, crooked snail.

I leave a little trail of of wet, disappointing slime wherever I go.

But, you know, who cares?

I see lots of other snails, sliming along their trails.

We slowly turn our awkward little heads,

Reach out our antennae and acknowledge one another.

Silently we transmit: “Should we all just drown ourselves in a beer?”

Then one of us say,s “No dear. We can’t.  There is too much work to be done here.”

So, we trudge along.  All of us.

Wives, mothers, sisters, daughters, aunts,

Snails.

I don’t.

You don’t.

We won’t.

Stop.

Even when our shells feel too tight and we run the risk of being stepped on.

“It isn’t fair! It isn’t right!”  We chant in squeaky protest.

But it really doesn’t matter what we think.

After all, we are only snails.

Mothers.

Sisters.

Wives.

Nieces.

Daughters.

Others.

We keep sliming along.

To the store.

Making dinner.

Washing clothes.

Goodness knows… the life of a snail is hard, just like her shell.

But inside is she is gooey, wet, so slimy and very, very, fragile.

 

 

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.