Scenes from the Immune System Wars

My “Trippy” Life

 

Okay, you, dear reader, are probably thinking, “she has truly lost her shit this time.  What could she possibly be referring to”

Well I will tell you. 

This is something I did not plan on broadcasting but the more I thought about it the more I realized it is probably a common issue for many of us with chronic health conditions. 

 

I guess I will just say it. 

 

I tried using weed for pain and anxiety.  

 

Let me go back a few steps: 

 

This story begins  last October when my husband and I were in Colorado. And let me be VERY CLEAR that I NEVER used a  pain drug of ANY kind (I was off the strong stuff by then) or any sort of anxiety med with marijuana.   That would be beyond stupid. 

But, while we were in the land of legal pot we figured it was worth a shot. 

Turns out, it really helped.  I didn’t want to get high. I just wanted to feel better.  (Well, in the interest in being clear and honest, I did try getting high once… it wasn’t my thang..).

 

But when I got back home, it was back to the dark ages.  Texas does not even have it legalized when prescribed by a doctor. 

 

So, It has been awhile in the past and I am no longer doing it so I had sort of forgotten about it.  

But I thought about it  again because the news has been trumpeting about the dangers of vaping and particularly the dangers of vaping thc.  That scares me quite a bit. I am not scared for myself. I am scared for all of the young people I know who do it regularly. 

 

I was vaping it after we got back from our trip and I was still trying to figure out how to get the effect I got from the closely monitored and edible stuff I got in Colorado. 

 

I wasn’t using the cartridges; I was using a vape thingie that you could heat up and then stuff the weed in and smoke it.   It didn’t work too well. (Well, this was all after I made a disastrous attempt at making brownies. They were AWFUL! )

Anyway, at one point I discussed the problems with the vape method I was using with a few of the younger people in my life that I know use weed on a regular basis and they  told me I was going about the vaping thing the wrong way. They all use the cartridges and they say it cuts down on mess and smell. 

I was intrigued but not intrigued enough to bother trying it.  To be honest, I still have a little of my stash left; I just haven’t used it. 

I have a pain management  agreement with a doctor and I don’t want to violate it.

 

The last time I used any weed was late, late one restless night and  I couldn’t find the vape pen and I really wanted to use it to sleep … (I suffer from BAD insomnia and I no longer take sleeping meds). I was sorta desperate and not thinking too well.  I started looking online for ways to make a blunt. (I found out that is what a joint is called these days… ) .  

I didn’t have the right material unless I wanted to desecrate a Bible 🙁  ( I am bad but not that bad). 

I kept reading and I came across something that looked easy.

I could make a bong from an apple! 

 

Yes.  I tried it. 

 

I found myself in my kitchen at 2:00 a.m. one morning, sucking through an apple.  

At that moment I guess I decided I felt ridiculous enough to say my career with trying to smoke weed (and I don’t really like to smoke anything) was over. 

But, I have to say, one thing going for the apple bong is that it is immensely practical.  Once you are done smoking it, you can take care of the munchies too. It is even environmentally friendly!

 

But back to the vaping and the cartridges and the use of marijuana in general.  

That is really what I want to talk about here. 

 

Our country is in a health crisis.  

 

We do not have health care for everyone and even those who have it have difficulty accessing it and getting the proper care. 

 

So a lot of people have to look at alternative ways to treat themselves for things like chronic pain, anxiety and insomnia.  

 

I always thought I was NOT one of those people.  I have been incredibly blessed with stellar insurance through my husband’s work. I have had access to all kinds of therapy and medication.  If I hadn’t I would be dead now, literally. 

 

But, you know what?  American medicine has its limits. 

 

I was given too much for too long and it made me worse. 

 

I completely understand why people self medicate with alcohol and with  illegal drugs. Sometimes, it is their only viable option and sometimes they can’t find anything else that works.  

This is not good news on any level. 

No one should be thrown in jail for trying to deal with their physical or psychological pain; provided they have not harmed or endangered another person. 

 

I know these waters get muddied pretty quickly.  

 

We do not deal with the things we fear most as individuals, i.e, pain that is physical and pain that is psychological, and so as a society we view the inability to conquer them as some sort of moral failing.  And for some, unfathomable reason, it is more acceptable to take a prescribed pill that turns you into a muttering zombie than it is to ingest an herb that makes you a bit silly (or morose) depending on your chemical make up.  

 

Both chemical compounds are addictive in the physical and mental sense.  

Neither one is safe and neither one are particularly good for you.  

 

What is good for you?  Talk therapy and an active spiritual life of some kind.  Those two solutions have been well studied. Oh, and compassion and love from someone important in your life. That is a biggee. 

 

Back to vaping…

So there are dire warnings come out of several states about the dangers of vaping thc. 

Why in the  hell didn’t the CDC look at this before? 

Why did people have to die or be horribly maimed first?

Hmmm.

 

I don’t know.  I do know that it is frightening and that young people are the same as I was at the same age.  You think you are invincible or that you will stop your bad habits when you have to… later.. 

 

I had a lot of those thoughts.  Boy do I wish I could have some of my bad habits back! 

 

I would just like to have a glass of wine and some fondue. with some nice french bread. That is out of range now. 

 

Of course I am an extreme case… in every way! But, I am scared for all my friends who use it that way.  

I do not judge them. Not at all! 

I just wish our system worked better and they could get whatever help they need another way.  

Or, I  wish whatever is stopping them would  unstop.  

 

I guess I  want the same things as any other mother or aunt or friend.

 

I remember my mom used to say to me,” I hate it when things are hard for you baby.”  

I always thought that was an odd response to the obvious fact that life is just… you know… life.  But now I get it.

 

I cannot clear the way for anyone else but I did decide today to share my little story.  

I didn’t  want to go into great detail but I decided it couldn’t hurt to show my own vulnerability and foibles.  

 

All I will tell you is that some concentrations of CBD seem to help insomnia and they are incredibly expensive.  I don’t think they are priced fairly. It is open season on these things because they are unregulated and only recently became legal here in Texas. 

 

I don’t know what my musings have done here.  Perhaps they are useless. That’s ok. At least I have formulated my thoughts into a coherent format.  As usual, your thoughts, responses and experiences are very welcome and appreciated.  

I wish you days of little pain and lots of energy!

 

Written between June and August 2019

Okay, That is an odd sounding name for a blog post, but you will get it… really.. I promise.  

My brain overfloweth of late and it hath been stopped up with many a thing. 

Let me take this in sections: 

1. I am working  for the first time since 2011. Yep. I gots a job. It is very easy going and I am doing fine.  I am only here at work a mere 15 hours a week just now so, if anything, it is something I look forward to.  I am part of a vanguard of tutors who have been hired to begin a new online tutoring program for Austin Community College.  It would be understandable to imagine that I am doing this from home. But that is not the case. Part of the job of this “elite” unit is showing up to a fancy computer lab at the fancy and fairly  new Round Rock campus. I am older than most of the tutors, and the boss, by at least a century. But, I am having to learn new things about software (YIKES!) and I am getting paid to not work very hard, so I cannot complain.  It tires me out when added to my other duties at home so it is about perfect.
2. I have had, cross my fingers and knock on wood and anything else  you can possibly think of, no hospitalizations since January. I have only had two ER visits during the last seven months.  Some of this is due to the fact that I would rather die than go to a hospital and be poked and prodded and humiliated and de-humanized.  However, whatever the motivation, I have enjoyed better health over all. If I try to think about this very hard it makes me panic, so I am not going to say anything else about it just now. 
3. Duties at home: Yes.  There are many at this point. I have an endless supply of duties pertaining to home and hearth at the moment.  I can go crazy there very, very quickly. At the moment we have SIX dogs, one cat and one bird in the house.. And a partridge in a pear tree….  As well as any number of young persons who are in various stages of getting ready to move to their respective colleges and universities in about a months’ time.   Such young persons are working at fairly manual jobs (most of them) and are HUNGRY and so consume mass quantities. I have witnessed food consumption I would rather not speak of… it is simply too graphic to think of  or relive. Let’s just say that back in the day when Sea World had the Shamu Show and the trainers would pour buckets of fish into the killer whales’ mouths, (yes.. that) that is what it feels like. I feel like my young persons slide into home base in the kitchen and open their mouths and I throw in buckets of chum.  They take off again and when they return, I need to have more chum ready for them. I have to add here, the kids are not the only eaters of the chum. My husband, the distance runner, is also one of the chum eaters. Goodness bless him, he eats pretty healthy but he EATS and EATS….. Of course, this is all in comparison to me.  I have a stomach that has been surgically replumbed. It is really, really small and I cannot eat much and I cannot tolerate much so my menu choices are totally boring and completely yuck. Food is not the only thing I need supply the young’uns. I am trying to listen to their plans, offer advice when asked, get things ready for the moves and do whatever I can to keep our home going while it is basically under attack from so many animals.  I cannot even begin to count the number of poops and pees we clean up off the rug each week. When everything is said and done, my husband and I are pretty sure the ‘new’ (we had it done a few years ago)’ carpet will have to go bye bye.
4. It is hard to find peace.  It is hard to find my center.  It is hard to imagine what the future will be like. I feel like I am treading water as fast as I can and sometimes my arms just wear out and my chin dips under.  I wonder at those moments if it is worth it to keep paddling. I mean, floating face down for a bit might be sort of peaceful—Except for the whole drowning thing- I think it would quiet and lovely.  It is just that I don’t want to drown: I really don’t. I need to remember what my father taught me about swimming, (Daddy was a lifeguard and an Eagle Scout (the first one ever in Bexar county Texas)  who excelled at swimming and taught me to swim from a very early age). He always told me that when you get tired swimming, roll over onto your back and float. Let the water keep you up. He would tell me to lie back in the water and he would hold his arms out, (old swimming teacher trick) and tell me I was fine, and then he would slowly remove his arms and then tell me, “you are floating on your own.”   This isn’t a bad metaphor for what I am experiencing right now. I have been getting just so, so tired that I don’t feel like I can’t keep swimming. I don’t have anything left for anyone else, let alone myself( or G-d. ) Maybe I should just lean back and float and trust that I will keep floating without trying to. I am ok without the constant pitter patter my brain makes when it is constantly talking in my ear about every little thing I cannot control, “money… there isn’t enough, wrinkles…. you have too many, marriage… it isn’t going well because your spouse is always telling you that you have hurt his feelings by not checking in or not discussing something or not explaining yourself clearly or something, when all you know up in your head is you are tired and you cannot think in a linear fashion.  What do you do when you start to have performance anxiety in every fucking corner of your life? You want to turn over and float upside down! No! I choose to roll onto my back and let the water do the work!
5. I will miss the chaos.  I know I will. I will cry when they leave.  I will cry for joy and cry for the loss. I love my babies so, so much.  But, I am also ready to move on to the next phase of my life and theirs. What will it all look like?  I don’t know. But I am eager to keep letting the stream carry me along so I can find out. And, to be honest, that is all we can do anyway.  

 

I am happy that I remembered  Daddy’s teaching method from so long ago.  What I wouldn’t give to have him here again! 

But, I guess the lesson is still crystal clear.  I can trust that the water will keep me afloat. The Creator is not going to simply let me drown. However, I have to push past my own boundaries if I want to stay afloat.  I can’t give in and float upside down just to see what it is like to let myself go into the void: no matter how tempting. 

 

Just like my daddy letting me know he was there and that I could trust what was around me when he let go… I have to trust somewhat in the notion that we all just keep floating in the vast sea of life.  

 

Update: 

I never posted this essay and now it is late August.  The kids have all moved to their respective new homes to attend their new schools.  My daughter is settled in San Antonio and starting graduate school. I think she will be very happy with her new life. 

My son is starting his higher ed experience for the first time.  I think he will do well. There has been so much change. The kids and their animals have left the house and the last couple of weeks it has just been me, my husband and four furry sons; three dogs and one angry kitty. We will soon be joined by our niece but things will stay pretty quiet.  

This is the start of a new era.  

I don’t know what to think.

I don’t know what to write. 

I don’t know how to process. 

Who am I without my children around? 

Am I a professional? 

Am I a worker?

Am I a writer? 

Am I still a musician? 

Am I a lover? 

A I a friend? 

Am I a comforter? minister/ rabbi/ counselor? 

Am I a teacher? 

Am I still a mom? 

 

Am I a professional sick person? 

 

Good Grief, I hope  not…. I guess I just keep floating: like before. 

Oddly enough, after a two week hiatus from my job, I have found myself really, really stressed coming back to it this week.  There is a lot of half assery going on. It is not anyone’s fault. I mean it is the fault of the administration, not anyone who I am working with.  It can be very frustrating. I just want to do my job well and go home.  

That just isn’t the way the ball bounces:) 

It bounces kinda sideways… and crooked like. 

I have to let go of my drive to make things.. and myself the best of the bestest.  

It makes me sick.  

It invades my subconscious and I lose sleep. 

Going back to my dad, he told me that if I continued in this kind of thinking, I would get sick like he did.  His life was cut short by this very same thing. He realized that his drive to succeed had compromised his physical health.  Now that I have done some research I think I understand why so many of us in my family have weird diseases or die young: we are genetic mutants:(  It is the Ashkenazi Jew thing. We come from European (mostly eastern) Jews and our gene pool became a lot smaller compliments of a certain freak with a tiny moustache and stupid looking boots.  

 

I have tried to do differently and prioritize my health  and yet I am still not totally achieving success. It would seem that it is out of my hands and that would lead me to believe that I need to be forgiving of my own weaknesses, even though I always chastise myself for not “doing better” and somehow fixing myself. 

 

I cannot fix my genetic combination.  I also cannot alter what has happened (is and will happen) to my health.  

 

All I can do is keep floating and know that even when I think I can swim no farther and I want to give up, all I have to do is roll onto my back and let the stream of life do the work. 

So, I am here.  You’re here.  That means you are either sick like me, or you have some compelling reason to read this blog.  (Maybe you are a masochist:)

What do we do with that??

Well, you know, I think I have come to a new place with it all.  I think I have chosen to quit struggling against it so damned much.  I mean, I won’t win the war.  At some point or another we all die.  It is just a matter of when and of what.

Do we want to obsess on that and how we get there or do we just want to live and thrive the best we can in the  now?

I have chosen the latter.

So, now the real work begins.

The point is I don’t want to just survive.  Well, there are days when I can only  crawl from one thing to the next.  There is nothing I can really do about those days: crap happens.

But for the rest of the days I want something more from my life.  I want abundance.  I want some meaningful fulfillment.  I don’t think this is asking for too much.  I just think it is a multi layered solution.  It is messy; just like life itself.

What does that look like for you?

What does that look like for me?

For me, it goes back to the Divine.  If I am not in direct communication with my spiritual side I don’t get too far.  I get stuck in my own ego and my own fear and my own loud and critical, “you can’t” voice.  So, that comes first.  I have to do some sort of meditative practice.

Then, step two can be one of many things: I can listen to the small still voice within and see where it is sending me.  Usually it is telling me to go outside of myself and to be in touch with or in service to others.  Basically, my call to be in ministry never left.  It has just changed throughout the last (er..hemmm   30! years!).

Sometimes that service is staring me in the face and I don’t even see it.  It can be as close as my own home or as far and scary as a place where I need to study and mature.

Right now I feel like I should be trying to bring money into the family piggy bank.  We have another child about to start college and a home that is aging.  It would be nice if I could get back to work.

I really don’t know if that is going to happen or if it should happen.  I am just trying to be open to the possibility.  I am applying for things.

I also know I need to do something about this call thing.  I have been listening to it for a long time.  I have answered it in so many ways in my life:  I have preached and taught and listened and offered what advice I could.  But I feel pretty strongly that something new is headed my way.  I just need to catch the ball that is being thrown and and run with it, or in my case, slowly, shamble along with it:)

I have a feeling it is not going to be a money making proposition!

I am heading towards an actual point with all of this.

Just because we are disabled by illness or by pain, or both, we don’t have to stop being who we are meant  to be.  We have to be realistic and give ourselves the latitude to have bad days.  We have to know that we are not going to magically be who we were before we became chronically ill and/or in chronic pain.  But, we can be ourselves.  We can find meaning in our lives; whether that is through work or through more education or in groups or in choir or in the gym or in all of the above.

It is all a choice.

And having that choice is freedom.  It means that the endless vistas that were open to us before we were sickos are still not all closed.  Some of the borders might have shifted and we may not have the right paperwork to cross but it CAN be done.

We should not assume that we are left gazing across at the people running past us.  We can slowly run after them.

And you know what?

There will be a giant herd of Zebras (medical weirdos – my people ) loping at their own speed and no matter what the disease or or pain level or whatever-you-have: you are welcome to lope along.

 

 

 

This essay has been perculating in my subconscious for weeks now.

I have been learning from the media (yes, them:) and from the young women around me that many things I have experienced as a female, both as a  professional and as a professional patient, are sooo not ok.

I mean, of course  I knew that already.  I just preferred to either not think about it or felt like it was a hopeless cause by this point in my life.  Something like: there are always going to be male chauvinist pigs on this planet and I am going to run into my share like every other woman, so deal with it.

Don’t most women feel that way?

I don’t know anymore.  Apparently my millennial daughter does not feel that way. She expects and demands better.

My thinking about the things I have experienced has always been along these lines: when I was younger I was so insecure that I was actually relieved when someone cat called me.  At my high school I was a nerd of the highest order and the popular boys usually barked when I went by.  That’s right: they barked.  And if I didn’t understand that they told me it was because I was a dog.  As much as I like dogs I should have taken it as a compliment but not at that age!

I never lacked for boyfriends or male attention; I just thought I was liked for reasons other than the way I looked.

It has taken me half a century to admit there was something else actually going on.

I think a large part of that awareness is multi-fold: a. It doesn’t happen as much at 53.  b. I put up with less  poo these days. c. I am more aware thanks to what I have learned.

I always thought that unless you were assaulted, you really had no grounds to complain.

But then I started to think.  And OH, the memories! Every professional  position I have ever held as a professor or as a minister (except for St. Edward’s University)  has brought “incidents” along with it.  And, as I have become such a professional patient, I have things happen all the time that I find downright embarrassing.

I get really, really tired of being called, “sweetheart, honey and dear.”  It makes me feel like an old lady or a small animal.  I AM  sort of a small animal but that isn’t the point!

A doctor recently put his hand on my knee and told me I was too attractive for a particular medication because the side effects might be deadly: WHAT?!!

Reflecting back I think of my first teaching position and realize I only got it because the department head was “into me.”  He asked me to sit on his lap at the interview (and no, I did not).   Then he went on and on about how he had a girl friend my size once and that he always kissed her on his lap because she was so short. Gross!  He was at least thirty years my senior.  Thank goodness he liked my teaching.

As a clergy person I was told I needed to “man up’ when I asked for reduced hours in order to care for my family.  That was once of the most egregious things I ever heard and it helped me clarify the fact that parish ministry was NOT my thing.  It didn’t matter that my supervisor thought I was doing a good job.  It was just one of those things we are told by those in power and it tipped the balance for me.

I remember a friend who is a doctor told me once, “I have never been able to wear my stethoscope around my neck and I  didn’t know why for a long time.  I finally realized it was too damned  phallic.  I don’t need a phallic symbol to be a good doctor. ”  And she was;  a good doctor and a very feminine person.  She helped me think through some things.

So where does all of this leave us?  I have no idea!

It has just made me think a lot about, you know… life.

And it makes me hopeful  that things are becoming better for the women that come after me.  I am excited to hear how little they put up with!

Am I more outspoken when I am spoken to as a tiny pet in medical situations? No, I am not.  I am afraid to cause waves.  I just don’t have the energy or the latitude to go there.  It is hard enough to find good doctors.  I know that is a stupid excuse, but it is the honest darned truth.

I figure pretty soon I will be hearing, “do you have any grandchildren, dearie?”

That will be new and different!

Ah well, I would love some feedback on this one.  Please let me know what you have experienced.  It could be that I am just nuts.  That has happened before… that I am just nuts. But, I kinda think not this time.  

I  do know that men experience these things as well.  My son has been through some genuinly awful things with an ex girlfriend.  Men should be able to speak up as well.

I guess that point is we are all complicated beings and being boiled down to an object just doesn’t work.

I am so much more than an object!  I am entire pain in the ass:)

Oh dear, all I see now are nodding heads.. Whoops!

Hello All: I cannot thank you enough if you have bravely looked at my video.  I realize it sort of craps out at the end.  It was my fourth or fifth attempt and I like it in general.  I had planned to go finish it and never did, so I thought I would just post it and keep on going.  After all, I am not getting graded or making any money off of this.  I am my own worst critic!  I have been lying in bed the last two nights, too scared to even look at it:)

Yeah, it ain’t perfect but neither am I…. far from!

So, the latest battle in the Immune System Wars has been raging for several months now and I keep hoping I will win and but I seem to just be losing ground.  It is all I can do to live life, one day at a time.  If I think very far past that, I freak out.

Two of my chronic conditions have been in full swing: my mixed connective tissue disease (which I call Lupus with Friends) has been going whacko.  The last time I saw the rheumatologist he put me  back on steroids and stopped a medication I had been taking over the past year.   I friggin hate steroids. I don’t mean I just hate the bloat or whatever; I hate the fact that even small amounts turn me into a mental basket case.  I took a medrol dose pak, many of you will be oh-so-familiar with those- and then began a course of 10 mg. a day.  After treating myself for six weeks I was basically suicidal.  So, I quit and prayed I could hold my own.  Guess what?  I couldn’t.  My joints and my interstitial cystitis came roaring  back to town.  So, back I have gone.  I am trying to break the tiny 10mg pills in half.  We will see if that helps and if I can tolerate them.  Sometimes I think there has to be an end to all of this.  It is just too much.  I have never felt this so much as I have in the last couple of months.

The other issue that has come up again is my chronic pancreatitis.  I have a birth defect that is slowly killing my pancreas and causing me incredible pain.  At this point I can no longer digest food other than protein shakes and mushy oatmeal.  I am often nauseated.

I decided I had had enough of it all and went to see the surgeon who is the best in Austin at removing the pancreas (he works in oncology).  He told me, “I don’t want to kill you.”   So.  Basically, because I have a primary immune disease and an autoimmune disease and the fact that I almost croaked from my gastric bypass, no one wants to touch me with a ten foot pole.  This particular doctor is actually a wonderful human being and told me I should go to the Cleveland Clinic and get a work up to see what might be possible.  The problem is twofold: 1. That costs a ton of money. 2. I am not physically up to making that trip by myself.  So, I am stuck for now.  I can go back to Dallas or go to Houston and talk to the folks there… and I may do that.  But in the interim I have to deal with my pain.

So, what to do about pain?  Pain is my constant and unremitting nemesis.  At this point I have been unable to convince the ‘pain dr.’ to grant me more medicine.  They either don’t believe me or don’t really think it will help.  It is quite complicated.  I am working on finding alternatives as fast as I can.

One possibility is having a pain pump (or intrathecal catheter) installed.  I really do not want to do this.  I already have one installed device; the spinal cord stimulator.  I have a battery for that thing in my hiney.  As I understand it, the battery for this would go in my tummy and they would put another line of wire down my spinal column.  I wonder if there would be too many things going on back there?  Who knows??????

I am just way OVER myself.  I want to call the company that made me (must have been Walmart) and tell them I want a refund on this defective body.  It’s ridiculous to have this much crap go wrong.

I know that there are others out there that are in way worse shape than I am.  So far I don’t have anything that is immediately fatal.  I just have things that are chronic and annoying and will get me in the long run.  I can live with that but I cannot live with the pain.

I would welcome any advice at this point.

Unfortunately I do not live in a state where marijuana is legal, even for prescription.  So, it is not an option.  If I wish to continue to see a pain specialist, I cannot use pot.  Trust me, I wish I could magically transport my life to Colorado!!!  I think that would be a great choice on so many levels but it is not where we live.  So, here I sits.

I hate to write such a bleak post.  I really do.  I want to be all sunshine and happy thoughts but sometimes there just isn’t any room for sunshine no matter how hard I look.

It is in these times that I try to be still, to listen to the voice of the Divine and to hand myself over and simply say, “I can’t do this; help me.”  Sometimes I feel that works and sometimes I don’t.  The only constants are my furry four legged children and my furry  two legged husband and occasionally my two legged children, who seem to still need me in some fashion.  It is nice to be needed.

So that is my report from the battle field.

I am hunched over in a fox hole in the trenches and the artillery just won’t stop firing off rounds.  Maybe one day I will just stand up and make a run for it.  But for now I just cover my head and pray it will stop.

That’s all.

I am a Volcano dweller.

You probably didn’t know.

I don’t look very Hawaiian: but I am.  I am the first ever Jewish pacific  islander  volcano woman.

I live deep inside the crater on the big island.

Just now things are really heating up.  I don’t know what to do.

Should I stay inside where I have been for so long?  Or, should I peak my head out over the crater, my home, and see what is happening.

I mean, it might be fun to be a part of the mainstream again.  But, man o’ man is it hot out there.   How long would it take for me to flow to the bottom and who knows if I  could make it intact enough to start a new life on the outside.

Today I was feeling brave and so I climbed my way up the wall, out and above the edge where I make my home: it is protected and has its own air conditioning and plenty of cushy couches and water, all kinds of things that make it almost like it would be if I lived comfortably on the outside, where the earth dwellers live.

You see, I used to be one of them.  But stuff happened and it began to be easier to just stay inside the mountain: the center… the heart beat of the island.  I have been here so long I don’t even look like an earth dweller any more. Instead, I am covered in a red flame.  It is like a rash all over my former body that never leaves.  I am hardly recognizable,even to myself, after all of this time.

It was certainly tempting when I looked out over the edge.   It made me sort of sad and yet sort of hopeful.  Maybe this is my time to  return.  Or, says the voice of disbelief in my head, maybe I never will be ready and will always be stuck inside, too scared to flow out again and circulate and become a real functioning human again.

Could I handle it?

I honestly do not know.

But maybe, just maybe, I will join the flow and see where it takes me.

 

I have not completed a single blog entry since my surgery date of August 16.  I have wanted to many times but just did not feel up to the task.

You see, the whole thing wound up to be quite different from what I had expected or hoped for.

I had a two week stay in Dallas for my pancreatitis in late July and early August.  Then, I was home for one week.  I honestly don’t remember much of anything about those two weeks.

I do remember the day we drove back to Dallas, checked into the hotel that is part of the Baylor medical complex ( it is awful and not worth the money or the convenience).

And then, it was lights out for me for the next two weeks:

I remember snippets of things and some stuff that was hallucination.  I also remember seeing my parents and Peyton (sweet girl) and that we were all discussing if I was going to stay with them or go back to where I was.  I distinctly heard Peyton say, “If you need me; I am here all the time.”  She had a nice, young man with her but he never said anything.

That was NOT a hallucination.

I remember my parents literally brushing over me… not in a physical hug of course, but in a manner that made me feel warm and feel their presence.  I heard my mom say as they left, “are you sure this is the right thing, Harold?”

Then dad said, “it is really her decision.  She will be okay.”

After that, the lights seemed to come on for a while.  I still had a breathing tube in me and I desperately wanted it out.

I was also very, very thirsty and confused.

It seemed forever but the breathing tube came out and I was able to suck little cubes (sponges) of water at the pace of one every four hours.

I lost consciousness again.  There were so many strange things going on in my head.  For a while I was absolutely convinced I was in a veterinary hospital.  I also thought the nurses where changing in and out of costumes and trying to trick me somehow.

I firmly believed that every time I got a shot of one pain killer, the nurse had to wrap the bed in string.

This is all so crazy town that I have been embarrassed about it.

Then , I remember the family coming to see me in ICU.  I had a lot of lines and machines attached but they had already taken out the catheter so I had to get up on a disgusting bed pan to pee.

From then  on, I was very conscious….too conscious.  I spent another two weeks there and was in pain most of the time.  I don’t think it had to be that way.  In fact, I think the hospital did a shit job of addressing my pain and nausea.  But, in other ways, they were fine.

So, what happened to me that caused all this pain and hospitalization?

After my laparoscopic gastric bypass, I got pneumonia.

Then, my belly started to swell and the doctor thought I might have some bleeding internally from the sites where he went in.  So, he took me back into surgery and checked all the laparoscopy sites.  There was no indication of bleeding.

The next day apparently things got really bad in the middle of the night.  From what I have been told, I got massively swollen and the doctor assembled a team at midnight on a Friday and they went in and this time it was through a big cut in my stomach.  The scar is impressive.   It starts at my mid waist and does a little u-turn thing around my belly button and then keeps going.

Apparently, my intestines were completely stuck together: strictures, he said.

They took out my entire intestines and washed and unglued them from one another.

So, when I finally returned home, on the 17th of September, I was still using a feeding tube and a wound vacuum.

Two weeks later we drove back to Dallas to see the surgeon and he removed my feeding tube, which was very painful, in the office.  He also unplugged my wound vacuum.

I went home and my son observed, ” you have been rejected by the Borg. ”

No joke!

I have never, ever been more grateful to have my own parts without other things draining and sticking out of me.

So today is Dec. 2.

I lived.

I have had ‘flu for over a week because I never got vaccinated and I am already sort of physically worn out.

Eating is very difficult but I have lost around 60 or more pounds.  I am well on my way to success in the weight loss department.

Has it fixed my pancreas?

No.  But it is helping.

I will never, ever go under into surgery again expecting a good or normal outcome.

I am too spooked.

My poor kids and husband have been through the wringer with me and we are all tired.

I am just ready to move on from this.  But, for some reason I guess I needed to blog the whole damned thing.  Now that I have done this, maybe I can let it all go a bit.

I am sorry if this was boring but I really, really hope that I can let go of the rope it has had around me for months and I can began writing more interesting things again.

Shalom …. dear reader.

Yep, that’s right.  I have been in the hospital in Austin, no less, and with another problem than the usual one!  I am so proud of me!

I have been having some mystery infections.

Last Sunday it got really bad. The world was a blur and it hurt to breathe and stand up.  I knew something was really wrong.

Stan and I had taken two nights at a nice hotel here in Austin for our anniversary.  It was so nice to be away from home and responsibilities for a bit.

So, on Sunday morning, when we had planned for a leisurely brunch, I told Stan to just drop my sorry butt off at St. David’s North Austin Medical Center.

My temp was, 102.8.  That is the highest I have ever had as an adult.  And, for many of us ”’zebras” with faulty immune systems, it is even more serious than for a “normal” person.  Our  bodies don’t know to stand up and attack like that unless something very, very bad is going down.

So, I have been in he hospital almost a week and taking bags and bags of IV high powered antibiotics.

Three weeks later:

Sorry, but I do get distracted!   The upshot of me going “septic” and my long stay at St. David’s North was solved by removing my port a cath.

This was my life line for receiving meds and fluids easily without anyone having to go hunting for veins that are either not there or decide to roll when you get near them, or that start out looking all innocent and positive and then blow up.

As you can imagine, I really, really liked having the port a cath.  But, sepsis is no way to live:)  (You see what I did there…. right?)

The hospitalist  seemed clueless as to why I was so infected: my white cell counts were in the stratosphere, but he asked what I thought.  So, all things being equal, we figured it out together.

All of those dire warnings I had heard about port a caths and the possibility of bad infection; happened.  It was great when it worked but most of the time it was a mess.  I had two separate ports placed on my right side in one year and then a third doctor who went in and tried to build a ‘little shelf’ so my site would be easier to access.

The guy who took it out offered to put a brand new one on my left and the same time as we were removing this one.

I said, NO THANKS.  I think I will just put up with the poking and prodding and the pic lines, etc.  That infection could have killed me and that is not the way I wanna go out.

I will just have to be firm when I ask for the use of a doppler machine to find a vein.  Those tend to work brilliantly.

Anywhoo: I ramble.

Next up on the Katie repairs time table: June 26 I had some new shots in my back and another attempt at blocking the nerve that causes the pancreatic pain.

It was sort of fun because my son drove me and my friend, (who also needed shots and has a similar host of ailments)to get knocked out at about the same time.

My friend is from Australia and was planning a trip back in the next two days after the procedure.  So, when the nurse was taking her down to the car and Samuel with them, she kept asking him, “Do you want me to get you a wallaby on this trip?” Samuel politely refused her offers and later told me he thought a wallaby was something bad or poisonous.  I told him that it was actually a cute, miniature Kangaroo and he said, “oh ok then, tell her I would like one!”

My friend was surprised when I mentioned it because she was too stoned at that point to remember much at all!!!

I try to be cool about asking dumb Aussie questions because I know those must get old. but, I am afraid I will have to make an exception here:) I mean, she started it, after all.

This Friday, July 7, I am having eye surgery.  It is something I am looking forward to and desperately need.

Long story short: I was born with a severe case of Strabismus, or, lazy eye. 

I have had the muscles in my rogue eye fine tuned three times: 1967, 1972 and in 1984,  I am due a tune up.  Also, I have small growth under my eyelid that is not at all attractive and  needs to be cut off and biopsied (fun!).

I loved the ophthalmologist  that I finally made time to see. She explained all sorts of things about my condition I had never known.  She said fixing my straying eyeball is not’ just cosmetic’ it is actually effecting my sense of balance and ability to see out of my “good” eye.  She even gave my daughter a lens to look through that explained what I see. Hannah said, “that makes me a little nauseated.”

Anyway, it is a good thing.

And then, the surgery that was recommended by the Pancreatic specialty team in Dallas over six months ago, might actually happen.

Update: July 23, 2017.

Well, it took my a while to get back here, didn’t it?

What can I say? The heat really, really knocks me flat. So does chronic pancreatitis, lupus and hypogammaglobulemia.

But good things are happening!  I have been doing some amazing work with a new therapist cum spiritual adviser. She is such a perfect fit for me that I know she is G–d sent.  Every time I see her I get so excited that I can barely contain how grateful I am.

The Jewish mother in me wants to feed her or shower her with gifts.  I know I don’t need to do that but the instinct is hard to squelch.

And, the best news of all: I have an actual surgery date!!! August 15 or 16 (depending on which day the o. r. with the robotic arms is free) and (so, so happy!) my surgeon worked magic on the insurance company and they are going to pay for the operation.  Yeah.  I feel like several weights that looked like giant question marks have lifted off of my shoulders.

So, what do I do now?  I start worrying about failing the surgery.  I mean, it is a gastric bypass.  Although about half of the reason is to bypass my effed up biliary system, the weight loss thing is important too  I have to lose all I can.  And you know what?  I want to lose all I can.  But I am so frightened of failure when it comes to weight loss that I worry I will be the first person ever to fail the gastric bypass.

This morning sometime, I had a dream about it.  In the dream I was telling people that I was failing for xyz reasons… and this was BEFORE the actual surgery.

I remember that in the dream someone sat down with me and told me, “if you keep telling yourself you will fail, you will make it a reality.  It is all in your head.”

This hit home for me and I started crying.

I will make it happen.

I am being given a new lease on life.  I need to take it by the horns  and go with it.

I need to do whatever it takes: even the daily struggle to let go of the food when it has its hold over me.

I  begin the pre-diet on August 1 and I need to go back to Dallas for a induction lecture given by a nurse.  I just want to look and feel good.

I am scared but this is going to happen and I need to push away my fears and get on board.

I will.

I will.

I will.