Scenes from the Immune System Wars

I think I have experienced a new low in the treatment of my chronic illness.

The only thing I can figure out is that my rheumatologist is trying to get rid of me. I am too much trouble, it seems.
Well, that feels bad.

But, to be honest, this is not the first time this has happened.

Let me explain:

Over the last three months or so, I have been having ‘flare’ symptoms, meaning, my body has been swelling on the inside. This has caused me to have bladder spasms and tight chest muscles and a variety of other things.

I know the flare is ‘real’ because my blood work shows that my ANA, which indicates a triggered autoimmune response, is high.
In addition, I have had swelling and I am, for the first time ever, anemic.

I have been really ill with unexplained high liver enzymes and my fatigue has been off the charts. When I can sleep, I am often out for fifteen hours at a stretch.

This fatigue and increase in pain is difficult to deal with but I cannot seem to get any answers.

This whole time I have been forging ahead, not hospitalized, and trying to just keep going.

Any special treatment or consideration of the blood work and symptoms as a whole, has simply not happened.

I have asked my rheumatologist and her colleagues at the clinic where my gastroenterologist, immunologist and dermatologist, and psychiatrist, all work. I have been going there because the clinic uses the Mayo model: i.e. they collaborate about your case with one another.

It seems this situation has backfired in my case.

After questioning my rheumatologist several times on the new e-mail system for patients, I received the reply that my conditions fit under a theory called TMS and she directed me to the lectures and book of a particular physician who espouses this theory.
The theory is that inflammatory disease processes are a mind body response to unconscious stress. Also, that this is the only answer to the levels of pain and poor health experienced by people with my profile, in her opinion.
It seems, she no longer believes I have verifiable illnesses.
This is odd because on my last visit with her she discussed changing my medications, which consists of immuno-blockers, to something stronger.
This is added together with the fact that I have an immune system deficiency that I treat weekly with a subcutaneous plasma product. I was diagnosed with this illness ten years ago after being sick with a lifetime of upper respitory illnesses and three, back to back sinus surgeries that were unsuccessful at treating my infection.

In other words, the primary immune deficiency I have has been verified. In addition, my connective tissue/autoimmune disease was verified by a doctor at the Mayo clinic in Jacksonville, Fla.

I am not making this shit up. It is weird and hard to pinpoint and frustrating, but it NOT a fantasy.

It is also not something I can get rid of by doing a workbook to pinpoint my problems, from a psych stand point.

I do journal and write all kind of things. I have a blog and a book of essays and on and on.
I also see a psychiatrist, who, by the way, cut back all of my meds and completely took me off of a few. She told me I am coping incredibly well with all of it and congratulated me.

I even have a therapist and marriage counselor. I have all of those things.

Oh, and I went to Seminary once upon a time and I am trained to do counseling at a basic level myself, not to mention the other degrees and 20 plus years of teaching, where I interacted with students with problems all the time and referred them out to counseling.

In other words, I don’t have a lot of pent up Issues that are impeding my health.

I AM NOT THE CAUSE OF MY OWN INFLAMMATION.

Do I have problems? Hell, yes!
Do I have a perfectly calm and carefree life? Hell, no!

But, I don’t work outside the house anymore and I conserve my energy as well as anyone in my position can.
I have a 15 year old son that I home school, because of health and depression problems.
I have a 20 year old daughter in San Antonio (90 miles away) who calls me a lot because this has been a tough semester and she is transferring.
I also have an 80 year old aunt who lives nearby and drives me insane.
I am pretty upfront about all of that.
My husband works like a dog to keep us all cared for. I cannot lean on him much.

In fact, I think I am pretty good at confronting my problems.

I have a lot of anger. I know that. It is one of my default emotions and it is not particularly helpful.

But, I don’t hold it in.

I exercise as much as I can (pool therapy and dog walks and house work in a 3k square foot home).

I eat very carefully.

I just don’t think the doctor has a point when she tells me my problems are somehow psychosomatic.

My health is a problem, yes. But, it is not one of my own making: neither consciously or unconsciously.
However, if this is what she believes to be true about me, there is probably no way I can expect to get good treatment or problem solving, can I?

So, what to do? Do I run to another rheumatologist? Do I change my approach?
Yes, and no. I will see her one more time before I dump her, and ask her quite frankly about these things.
I will also go visit with the shrink, the therapist and the candle stick maker, to see if I am missing something here.

But the net result of it all is that I can not stand going to doctors anymore. I don’t like any of them. I have given up on working collaboratively. I have just been burned too many damned times.

Also, I am not going to do anything about my physical issues, tests or otherwise, unless I am close to death.
I am going to take my infusions and my medications like a good girl and try to stay healthy on my own. I will see the doctors when I have to for refills and beyond that; I just don’t want to go.

If I am really, really, sick, we’ll know.

No preventative medicine or figuring out why I feel like crap…

I am all done with that.

Next week I am meeting a new internist who also works at the clinic I mentioned above. She is the wife of a friend and was recommended highly. I will run all of this past her.

If she freaks, she isn’t my doctor.

If she tells me I should just back off of rheumatology or switch doctors, I will.

As I said, I am tired of trying so hard.

Those of us with chronic and often rare, poorly understood, conditions have to advocate for ourselves. I have done as good a job at being my own advocate as I can. I think at some point, clamoring to be heard when someone has their fingers in their ears is just not going to work.
In fact, it is taking more energy than I have to keep clamoring.
So, for now, I will be quiet and hope there is no big disaster looming on the horizon that I could have stopped, “if only.”

I will just have to live forward.. in pain and fatigued and with other issues, but going forward.

I won’t let a doctor who is tired of me make me feel as though I am “not sick enough.”

I’m done.

I write with chicken hands this morning.  The pot on the stove is bubbling away: my Passover matzoh ball soup  on its way.

It will even be gluten free… just like  my matzoh, just like me.

The meal will be set, the family I gather around myself to hear the old story…

I think of my ancestors, preparing the meal, carefully Kosher, in dark kitchens.

This day will be long but I will serve all of you, and leave an extra place, for You.

But, I will.

Me and my chicken hands will carefully arrange the plate;  our Seder of tears, questions, memories of slavery, memories of exodus and renewal and it will leave us pondering anew;

When does the journey end? Where does it go?

It doesn’t matter.

For me it is the journey and the questions and inevitably, a few answers…

A sense of lines so deep that nothing: not history, not mass extinction, not distance, can erase.

My family: I have found you at last. You were there the whole time.

My Lord: we have found me at last.

Here at your table:

I knew you were always here with me.

But oh, it has been a long, long, time, since I have felt welcomed home.

Come in, Elijah!  Come in, Adonai.

Come sup at my table and fill me and those I serve…

The slavery, the wars, the losses and gains, all are welcome here.

And I know that You, I AM, are here too.

Thank you! Thank you! From the bottom of my imperfectly Jewish heart to my dirty… chicken hands.

 

Metal chair and metal table.

Bright, disruptive light.

The bed is not a bed but a torture device of cold steel with a pallet of cotton on top.

It is freezing here.

Maybe I’m dead.

Could it be that this is the room where they drain the bodily fluids for the autopsy, just like on TV?

Maybe the next stop will be a drawer and a toe tag.

No, I don’t think so.

I wouldn’t still feel this shitty.

I would be floating above me and looking down at my plump little body and thinking, “Oh no! oops, I didn’t mean to do that.”

But I might also be secretly relieved.

That’s a horrible thing to say, to write, to think.  How utterly horrible of me.

But, it happens.

Because I see the metal chair, the bright light, the table with the thin cotton mattress all too frequently.

They frighten me so much that the thought of them makes me shake and cry and want to do just about anything to avoid them.

The next thing is the nurse and the needles and me-talking brightly- while she pokes me: over and over and over and over and calls in the next nurse, (the really, really good one) who pokes me: over and over and over and over and maybe two more (really, really good ones) and finally, a fancy ultrasound machine that helps them find my veins and they use a little harpoon to dive in under the skin, to the deeper veins.

I chatter and breathe deeply and they tell me how I am a real “champ.”  I always think they are going to say,

“Chump. You’re a real chump. You come in here and expect to get an IV in those crappy arms with all those blown, tiny, scarred veins!!!!”

The joke is on me, folks.

Most of the time they just get in there and take the blood and leave.  I get nothing from the exchange but bruises.  Nausea, pain, the rest of it, goes untreated.  Because I am ‘chronically ill’ I have to prove that I am in some sort of extra straits in order to get pain medicine or any real relief at all.

So I just lie there.

I count the ceiling tiles, over and over and over.

I try not to panic.  I try to breathe.

If I try to read my I Pad, they say I am not sick enough to be there.  This happens even when I have been ordered by a doctor to go.

I often feel I am on some carousel of the damned.  The horses and giraffes and other animals go ’round and ’round and they all have needles and trays and they beckon to me, saying “hold still, just a little stick.”

“The doctor won’t give you anything unless they know what you have.”

“You can go now.  We don’t know why you are so sick this time.”

“Here’s the door.”

“We are always here if you need us.”

 

 

I am here, it seems.  I have arrived at middle age with a great big hrrmph.

My knees are creaking and my hip is dipping and my back feels like it is broken.

Wait!  Is this the connective tissue disease?  Is it the CVID?

No.  I don’t think it is any of those.  It is a bad case of fat.

Yes, I said that.

I am over weight.  I fight it all the time and yet it is still a dirty fact.  I read about fat shaming and positive body image and about fatkinis (those are bikinis for big ladies) and all the rest.  I even looked over a bunch of nude photos of the late Leonard Nimoy’s that were a celebration of big women.  (Spock was a perv!).

I stared at those photos, wondering if I look like any of the fat women in them.  Am I the really roly poly one with the thighs like tree trunks?  Or am I like the slightly less voluminous one who has the lovely face and is kicking her leg way up high?

Why, in fact, do I care?

I do not hate fat people.  In fact, I am my own worst judge.

Like many women, I have been inculcated into the league of the imperfect woman.  I was never this or that or whatever enough to be beautiful.  But, I lived through it.  I grew up and I got over it.

What I am worried about now is my damned joints.  I know that the less weight I carry, the better.  And yet, my body does NOT like to let go of weight.  I have been on a lot of nasty drugs that have nasty side effects that include bloating.

I have also been on some that are supposed to be appetite suppressants: so what the hell?

Do I just accept this and move on?  Or, creak and wheeze down the road… as I am?

That has never been my way.

Instead, I start Weight Watchers for the upteenth millionth fucking time again tomorrow.  I have to.  I have to do it for myself and for my family.  My son, who takes after me in so many ways, is doing it too.

For him, I will make this work.

I will do whatever it takes.

No more creaking and groaning.  I’m gonna lighten the load.  And if WW doesn’t do it,  I am going to get a lap band if my doctors allow it. I am not sure it is possible but I am definitely thinking of it. I am not afraid.  I think the benefits might outweigh the risks.  (Pun intended).

We’ll see,   I really need to do it this way if I can.

Day by day is the only way….

Creak, grunt, groan eeeeek.

 

 

So, I guess the stupid disease department has caught up to me.  I don’t go without a fight, that’s for sure.

I mentioned in previous posts that my blood work has been wonky and that I have been “off.”  Well, I have been making the rounds to all my specialists to see what might be brewing and have heard the news that I am much ado about nothing.  In other words, I have the same diseases I have had: but, my autoimmune disease is active again and that is just how it goes.

What does that mean?  It means I am having a flare.  A flare, it turns out, can be either a noun or a verb.  I think in my case it is a verb.  I am not a flare in the person, place or thing- sense; flare as a noun can be described as  ” a bright burst of light.”  No, that is not me.  I am more on the verbal end of things: “to burn with sudden intensity” or  my personal favorite, “gradually become wider at one end.”

My connective tissue, the glue that holds together all my bones and joints and the gooey stuff in between,  is most certainly burning with a sudden intensity.  I can even see in my mind’s eye that the connective tissues themselves are becoming wider as they swell.

What causes this? My autoimmune system is attacking me from the inside out.  It thinks my own tissues are the enemy: I mean, how dumb is that?

You would think I could just say, “Ok, stop it you idiots. Behave!”    Instead  I have to take medicine I hate because it is not elegant but more like a carpet bombing of my system:  I mean steroids.

Steroids are great things when you need them.  They can’t fix a damned thing but they do shrink swelling.  They also make you more prone to infection (already a problem for me) and make your face swollen, your bloated belly hungry,  cause anxiety and sleeplessness:   So, I have been avoiding them.  In fact, I have told myself, “never again.”

My flare pain has reached max output.  I can’t deal with it.  I have to go for the ‘roids.

Yesterday I was bed bound and sleepless due to the pain.  Rolling my eyes back and forth in their sockets was unbearable.

But, I am proud of myself.

In the past I used to come totally unglued and go to the hospital and beg for pain meds.  So far, I haven’t done that yet.

I can do this.

I can flare but not scare.

But I wish I could figure out how to not flare.  There is always an element of self blame when this happens.  It is complicated.  I suppose it is just like with all chronic disease.  I always ask myself the question, “Did I cause this?”

If I did, I didn’t mean to, obviously.  But, it always feels like a sort of failure.  It’s like a giant weight drops down on top of me and I cannot get out from under it.  I want to hide and to sleep it off but I am too uncomfortable.

The blame game can get old.  It is compounded by the guilt I feel for failing to keep up my end of the family work.  It is as though I have a big, “Out of Order” sign on me. I think that in some ways it is easier to be in the hospital, hooked up to pain meds, than it is to wait it out at home.

But, I have to do this.  And, I have to realize, without going crazy, that it will happen again and again and again and there is absolutely nothing I can do about it.

I have to submit.

I have to learn to have my flares with flair…

I am in ‘go’ mode.  It isn’t a bad place to be, actually:  I goes ’til  I drops then I collapse and sleep a lot,then I goes again.

Sometimes I worry about the collapsing part but I figure if I am able to sleep off the effects of whatever is making me sick that week, so much the better.   I have been trying really hard to not think about being chronically ill and to not look at Pub Med articles or Google Scholar or any of those things.  They always end in sadness.

We live in a time when we can overwhelm ourselves with information we do not understand.

And yet, who IS looking out for me and my health?  Well ,I guess that would be me.  I have very little faith in the medical community anymore.  That is not because I think they are bad or unqualified or whatever, it is just because I am weird.  I have to be my own advocate or nothing ever gets done.

So, where does that line fall?  The one between too much information and staying on top of my own health enough to be my own advocate?

I really don’t know.

Could someone please tell me?

I do know that it is more comfortable for my family and friends if I don’t mention my symptoms or illness.  It is better for me to wear more make-up on the days I feel crappy.

I do that to stop the questions.

I can’t answer them anyway.

When you tell people you love that you are at a high risk for cancer and your blood test keep coming back odd, but, “don’t worry,” you have already goofed.

You might feel better because you unloaded that burden of worry onto someone else, but really, it isn’t such a good idea.  It is best to keep that factoid under your hat until you know more. Maybe you won’t ever have to bring it up.

So the real question is, do we, the chronically ill and hopelessly fucked up, need to unload our health worries, our concern for the future somewhere?  Or, should we just close that suitcase of doubt and concern and sit on it… keep the lid on?

I don’t know.

Logic tells me that sitting on a load of baggage is always a bad idea.  So, where do we let it go?

I have been looking for places lately and one I have found is the pool:  Forty five minutes in there, running or doing jumping jacks, sort of drains the thoughts out of me.  I am not doing it enough, but it helps. The other place is here, in my home.  I love to hang on the couch and have the dogs cluster around me and demand to be petted.  Petting the fluffy dogs sucks the baggage right out of me.

Another important place I have found is not in the telling of my fears but in the actual living of my life.  I find comfort in keeping on, keeping on.  Whenever I am out doing the parts of my life I want to do, like taking  my son to his home schooling group or watching  lectures with him or discussing a topic with him, I am outside of myself and I am not working out of my darkest, fear- based self.

In other words, I am trying not to live in my illness.  I just don’t want to if I can help it.

I don’t know if this will always be the answer, but for now I will just truck on and hope I don’t crash anywhere!

 

 

Ah, the holiday letter;  I have been averse to writing, even here.  So many thoughts, so much emotion, packed into a couple of stupid weeks.  No matter how well I think I have prepared myself, it always comes up and bites me in the hiney.

This year is no different.  And yet, I like to think that I have made some forward progress.  I have learned many things from being chronically ill:

1. I have to do the things I really want/can do; no more.

2. I have to sleep.

3. Saying, “No” is a good and healthy thing.

4. Family drama helps no one and is to be avoided at all costs.  However, it will happen anyway.

5. Make good memories whenever and wherever you can.  Life will give you plenty of the other kind anyway.

6. You cannot please everyone, all the time.

7. Listen to what my body is trying to tell me, even if it is inconvenient.

Numbers 4 and 7 are particularly hard for me.  I would think that with the little bit of family I have left, number 4 would be a shoe in but, nah! Families have a way of becoming complicated and not just because people are  weird, but also due to the fact that having a member who is chronically ill is a burden on the whole family.  And, this is where number 7 comes in.  I have to listen to my body’s signals, which I am far better at doing now than a few years ago, even when they are horribly inconvenient.  By doing this, I have so far managed to stay out of the ER and hospital for a few months.

But, I have been told, quite clearly ,by my family, that my illness is the family dysfunction.  I think I knew that.  But, it is very, very hard to hear.  So, when there is drama, it is often created by me ignoring rule number 7.

That makes it kind of complicated.  Because, sometimes I literally cannot hear what my body is saying to me or it sneaks up on me.

Or, more commonly, I will get a rash all over and not even know it that is a symptom of fatigue: or, is it? It could be a new drug allergy or a flare or part of a virus or an infection of some sort.

I don’t always get simple 1+1=2  signals.  Things pile up on me.  I feel like a blade of grass that is fine with some rain and some cold and a light frost but when the temperature dives one too many times and I keep getting trammeled by the dogs and god-knows-what bugs are living in my roots; I start to fail.

That does not mean I can’t be brought back around with the right weed killer and some sunshine and water:  I can.

I am hearty after all. I am unbelievably resilient for a girl who was told all of her life that she was a weakling, that she was a just too big a whiner.

Nope.

The crap I have been through and go through continually (and those of you who share these lovely things will agree) is most definitely not for whiners.

Because if you chose the path of self pity, you will die and yet continue to live.

It is better to try and learn the rules that govern this new world you find yourself in; even during the damned expectation- filled holidays.

You let go of stuff you don’t need.

You rest a lot.

You try to not get stressed by anything or anyone.

You let go of more stuff.

You rest more.

And then, things still go awry.

That is hard, hard, hard reality to accept.  But, we have no choice.  We have to choose to live ahead and not behind. And this is a reality for everyone, not just the chronically ill: The holidays are never made up of perfect vignettes designed by Hallmark.   (Besides, those are scary looking:)

I chose to live like the St. Augustine grass in my central Texas yard: I suck down water and pesticide and all kinds of nasty things to stay alive, but I always, always come back:

Ageless and Evergreen.

Just like the song….

 

 

 

If any of you have experience with the 12 steps, and I do, you will recognize the three words in that title.

If not, good for you.  For me, it has been echoing through my addled little brain for the last 24 hours.   (I will self reveal and tell you I was a member of OA , Overeater’s Anonymous, for many years and that it is an amazing group.)

What does the word, “powerless” actually mean?  It means I have no way to act on my own behalf.

I don’t even think G–d can help me on this one.  Not unless he can make the bureaucracy that runs health insurance and the murky depths of Cobra and Human Resources and who-knows-what- run faster.  Somehow I think the Divine would get put on hold too.

But, I would like to see that.

Anyway, let me explain.  We are currently ‘between’ insurance policies in the sense that Stan’s former company does not pay our premium so we had to pay it ourselves, which by law, is our right.  As of January 1, 2015, his new company will add us on to their insurance.

So, we were allowed to write two checks, totalling around 2k, to a third party that pays our insurance to our current carrier so there is no lapse in care.  This is a big deal if you are me.

My weekly infusions cost thousands of dollars.

So, all of our medical stuff has been proceeding a pace.  I have been to the doctor, the kids have been, and we have picked up prescriptions.  Everything is all good.

But, when I called to re-order my home infusion supplies, they suddenly had no record of our checks, nor were they ‘allowed’ to send us my medicine.

I thought that was kinda ironic and pointed that out to as many people I could get on the line at the insurance company.

Guess what? They didn’t care!

So down the rabbit hole I went.  Four hours later I emerged with the number, e-mail and fax number of a federal government advocate that runs interference on this kind of thing.  This nice person informed me that Stan’s former employer had not done their job in sending on some sort of paper work.  She would start there and then untangle my mess.

I faxed all the pertinent information I could find and she (my rep) called Human Resources at the old company.  As of Friday, they had not responded.

The next step is that they get a letter from the feds.  She promised me they will respond, because they have to.  It just may take a while.

In the meantime, with each day I have no medication, I run a fever and my fatigue and pain level ratchet up.  But, I cannot really explain that to my family.  No one who doesn’t have this stupid disease can quite get it.

I understand that, I really do.

So, I march forward and do the best I can.

But I feel more powerless than ever.

What will happen?  When will I get my meds?  Will I get really sick?  Why am I running a fever all the time?

Why do I feel like a boa constrictor is squeezing the life out of me?  Is that all about the infusion meds or something deeper?

Possibly something deeper that I won’t share here.  But again, I feel powerless to overcome.

I am trying desperately to remember what it is you are supposed to do in the 12 steps to overcome powerlessness.

Ah, I know: turn it over to a power greater than yourself. Admit you cannot control these things and let go of them by asking a higher power for help.

Okay then, I keep thinking the higher power is not happy with me these days either.  I guess that is sort of stupid.  It doesn’t even jive with my own theology.

I believe in G–d.  I pray.  I just have had trouble believing lately that my personal troubles and doings are of any interest to Him/Her.

I am powerless to overcome.  Powerless to overcome so many things in my life.  This struggle over my most basic of needs, my infusion meds, is symbolic.

Life is full of struggles, of powerlessness, for all of us.  How we deal with it is what makes us who we are.  I believe that.

Certainly, Judaism, is a story of powerlessness and a struggle for understanding how G–d can chose a people and then let them suffer so much. Yet, I know we are not abandoned.

I know this in my head.  We are here to learn.

I just can’t accept it in my heart most days.

Today I will practice acceptance, but not hopelessness in the face of being powerless.

No.  I am here to learn.

I have not been abandoned.  But I am alive in this imperfect and messed up world.  I have to take whatever it throws my way.

 

 

Let’s see… I am supposed to be thinking of all the things for which I am grateful, right?  How sweet.

But we all know the real goal of Thanksgiving: overindulging in foods we don’t normally eat or cook.

That was certainly what it meant to me for many years.  In the days leading up to Thanksgiving I would worry that I was: A. prepared for my part in the feast;  B. psyched up and out about what I could and could not eat.  I even did the weight watchers thing where you visualize your plate as 3/4 full of veggie and one quarter full of goodies.

The weight watchers idea is a good one but I always took it too far.  I worried about the shape of the plate: width and diameter.  And it didn’t matter in the end what shape the plate was or how well I had done, I always, always, felt defeated.

Food has been my nemesis for as long as I can remember.

I suppose that is why Thanksgiving is just not my favorite holiday.  I eat a restricted diet now, with no gluten, low fat and very little meat, but I still have trouble with my weight..  I have spoken to many doctors and the honest ones have told me that all the medications I have had to take the last few years have severely messed up my ability to metabolize calories; something I was never stellar at to begin with.

So, I am locked in a war with myself. It seems I cannot accept this version of me.  Being this heavy, for whatever reason, means I am a failure.

I have spoken with several of my doctors about some sort of bariatric surgery and most have told me that my crappy immune system will not do well and I will create a monster that could infect and kill me.

That makes me mad.

So what to do besides trying to eat well and exercise, which I do most of the time.

I am back to the grateful thing.

I think my relationship with myself requires that I finally accept me the way I am… even now.  I tend to talk to myself in pretty nasty terms.  I have been pretty irritated with my body, especially the last few years. On top of everything else, I am overweight and feel really, really bad about it.  So, I berate myself and punish myself and think about how hellish I look.

What is really going on is a bid for control of my body.  The body that is sick and hurts all the time and is fatigued and doesn’t do what I want it to.

Plus, I thought if your health was less that ideal,  you were supposed to look all frail and thin:) Not Me!

I have decide to start loving myself by eating what I need and what is healthy and no more.  I am not going to use food as a weapon against myself.

I am also going to work on being grateful for this body I have;  all of it.  I have to accept the shape that I am and love it or I will never love myself in other shapes.

Oh, but it is hard!!!

Mirrors and photos are the pits but I am trying to remember: grateful, grateful.

If I wake up and I am not in the hospital and I am able to get out of bed; it s a good day.

So, this Thanksgiving, as I cook the turkey and make the stuffing, I am going to try and be grateful I am able to stand up and get the job done.  I will reward myself by being kind to myself and dressing nice, putting on my make-up and eating what I need and no more.

That is the best I can do.

I will be grateful for the health and the body G–D has given me and I will be grateful for all the wonderful things in this world: None of which have to do with the size of my butt!

 

(My boob is fine. In case you are interested…)

My big Golden Retriever, Rufus McDufus the Third, hums when he is trying to get his point across or when he is getting a particularly nice belly rub.  Sometimes, he just stares at you while you are eating and hums.

We think he must have a lot of room in is doggy sinus cavity.  Perhaps this is the sort of noise the dinosaurs made.  (Don’t worry, I am going somewhere with this).

I use to be a really good hummer myself.  I could sing, hum, chirp and fa la la with the best of them.  But in the last few years I seem to have lost my mojo in that department.  I can’t get enough breath control to really sing the way I once did.  I also keep having more grief from my off-operated on sinuses.

Is this an excuse?  I don’t know.

I miss choir and I miss singing like crazy.  It feels like a whole half of me is shut down.  I figure I am using my creative parts in other ways.

I write this blog.

I try to work on my novel.

I am trying to teach and raise my son… who, believe me, requires creative techniques.

But, Oh! The music!  I weep when I hear it.  I literally cannot listen.

I am trying to hold the faith that in the next few years my time will free up and my body will cooperate and will again find a place to sing.

It may not be like before;   I will never be the chirping bird I was.

I guess that will just have to be ok.

I know what I want to sing.  I want to learn all the music that goes down in Temple.  I want to learn everything that they sing there for High Holy days.  I want to learn all the Hebrew responses.

I have a whole world of new liturgy and tunes to learn.

That makes my heart leap with joy.  (I am weird.)

But all the liturgical music of my Christian past is still with me.  I know so much of it:

The chants: how I love them.

The hymns: I love them too.

The canticles and rounds and the early music, Palestrina and Bach and Mozart and Verdi’s Requiem.

Everyone’s Requiem.

I don’t want to lose those.

I think I am overwhelmed just thinking of all the music that is already in me and all of the music left to come.

Maybe Blah Humdog is not the right title for this little ditty.  Perhaps it is better to say: (See, I don’t know what to write here… )

Maybe I should just call this, “Hummmmm”

Or, “Blaaaaaah”

Make it a vocal exercise.  I could use one  of those.

In the meantime, I think it is time to learn how to download music to my I-phone so I can listen in the car.  I have not done that yet.  Either there is a teenager who wants me to hear their music, or the news, or I bliss out in the utter silence of being alone for a few minutes.

Maybe I will start humming new tunes….

Maybe that will chase the Blahs away………

Or maybe I will just chant “Blah, Humdog” over and over until my stress and my over active imagination give way to a blessed unity with the One who makes the music.

For that is what I seek, after all, blessed unity and calm with the Blah, Humdog that is sitting, looking at me with soulful eyes, at the very center of my being.