UP, Up and Away!!!

I thought it might be a good idea if I blogged on a good day:)

The surgery blues have fled and I think I am better as a result of the procedure. That is all good! I do have to go back in for stent removal but I am filing that away until it happens.

Weight watchers and I are beginning yet again today.  I do not find that depressing at all.  It is a constant battle against the bulge for me, but whatever. All I can do is stick to the plan and eat healthy and hope for the best.

Now that I can eat normal (gluten free) food again, it is a hell of a lot easier to count the points!

I am hoping to get some work from the editing signs my boys pasted all over the UT campus yesterday.

So, basically I am boring.  When I am feeling good I think of so many things, so many places I want to go.  But then I remember Saturday.

Saturday I went all day and had a great dog walk, etc.  Sunday I awoke to inflamed joints and fatigue.

I made the choice to get up and out.

I make that choice every single day that I can.  I just can’t get ahead of myself.

I want to join a choir and attend temple services regularly.  For some reason those are big, big things at this point.  I guess it is because I have kiddos to take care of.  I miss my daughter (at University) and am surprised that my 14 year old son takes up all the time I spent on them together!

But, that is his nature.  I have to nurture his nature…

Oh well, today there is sun and I have washed the gray out of my hair.


Itty bitty, dippy, whippy, baby steps….

Being a baby must be annoying.  I sure don’t like this whole baby step concept.  I am up and about a bit after a three day melt down of some kind.  I don’t know if it was surgery related or I have a bug.

I was so excited to wake up this morning not feeling like total poo poo that I made soup.  Yep, my husband had already done the hard part, the chicken and the broth, and I just completed it for tortilla soup.

And now I am exhausted.


I will get my son from school today; that is the main goal.  He gets pretty upset about his mom being so sick and I know he gets scared.  I need to be there at the end of his school day. My daughter is at a University 90 miles away so she gets to skip all of this..

We commute to a Charter School that is about 20 minutes away and picking him up is our usual ritual; my husband takes him in the morning.   It may seem small but it is actually a time for us to connect.

Raising children is complicated.

Chronic illness is complicated.

Marriage is complicated.

Ok, so everything is complicated!  What do you do about it?

You march on to the beat of your own drum.

My drum is not always in step with the rest of the band.  I mean, sometimes the little drummer girl in my head just turns off and I can’t do squat.

Little bitch.

OH well, I am wandering.

I am:

Thankful for sunshine.

Thankful for my husband.

Thankful for my kids.

Thankful for my pets…

There. That should get the little drummer girl going…(play bitch, play!)

Sorry for the profanity…



Post Surgical Blues….bah, dah, dah, dum..

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

Not working!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I don’t think so.

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

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

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

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

The black cloud is still parked right over my shoulder.

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

And yet, what if it rains again?

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

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

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





Here we go ’round the billary tree….

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

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

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

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

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

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

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

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


No choice now; those bastards have to go…

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


And a happy new year….

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

The bottom line is; I’m screwed.

Or, Not.

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

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

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