Scenes from the Immune System Wars

I do not normally write from within the hospital ‘hole.’ (This particular “hole” is Baylor Hospital in Dallas, TX).

I guess I give myself the option to go to pieces and put it all back together when I leave.

This particular incarceration experience is unique.   I never planned to be here so long.  And, I never meant to get so sick. : Lots of things have happened that I had told myself were “no no’s.”

So, things feel  really out of control here and I guess that is what has me so off balance.  Usually I can put some sort of spin on it that will make me trick myself into perking up.  But, right now, I just can’t get there.

The Lurid Details:

I have been here ten days already.  Ten is well over my limit.  I just feel like I am going to bust out and go running down the streets, iv pole clattering behind and with my undies exposed through my attractive hospital gown

No one wants to see that  happen: No one.

I came here on Thursday the last because I was desperate.  My symptoms were getting worse and worse and none of the Austin hospitals wanted me.  I had to come here; where my specialists are, and plea for help.

Initially, my friend was gracious enough to drive me here after working a half day and then could only stay a bit before she had to turn for home so she could work the next day. However, having her with me was a huge stress relief.

The Baylor medical school hospital I go through when I am admitted here is also a county hospital and trauma center.  And, I have to go through ER just like everyone else.

It is a nightmarish experience.

This time I waited six hours before being taken to an ER room.

During that time, I was hungry, thirsty and in pain; and so was everyone else in there.

I met some interesting people.  I even had a little sing a long with a very elderly woman who is suffering from Alzheimer’s.  Her daughter explained she used to be a “choir leader” and you could tell.  She was tapping out rhythms with her long, bony hands and stomping out the beat on her wheelchair.  I was humming along and asking her for the hymn number.  Something about my doing that really set her off and going.

She would tap, direct, and then look in my general direction and say in a very garbled way, “you know this is where you are supposed to come in.”

Goodness, but I have heard that before!

There was also a little woman there with heart attack symptoms just waiting as long as I was.  She didn’t seem concerned they weren’t getting to her.

She told me to get a paper and pen and write down all my information so her church could pray for me.  She said, “My husband is a Deacon and he will make sure this gets done.”

I couldn’t help but think he would have been surprised to find out what sort of liberal, mixed race  believer he was dealing with!

Later on, a man sat down next to us who said he had already been released from the hospital twice that week and wanted to be done with it.  He had gotten a call from his doctor’s office that he should go back to the hospital immediately because his kidney stones had turned into an infection, “in his blood.”  I don’t think he was aware of the seriousness of it.

He was tired of being out there and waiting for his own emergency he said.  I couldn’t blame him.

When I was finally taken back I had a lovely nurse.  She was very concerned about getting me hydrated and getting my pain under control. She would leave for ages and not come back and I did not have a call button, so I just sat there and shook.

After four hours there, the doctor I had spoken to at the beginning  came in and said, “I guess we have to keep you since you have been here before for this issue.  I don’t really know if you have it since your blood work and ct scan look clear but I am going to send you upstairs and let your specialist deal with you tomorrow.

She was very aggressive and flat out rude.  She thought I was pain med seeking, obviously.

I pointed out that I was still in a hell of a lot of pain and had been and she said, “I will give you one more milligram of dilautid and that is it.  I never give anyone 3mg while they are here.  You must have some big problem.”

When she left, I sobbed.  The nice nurse had heard it all and said she was reporting the doctor.

And so the fun began….

Here I am, all these days later and I am sicker than when I got here… and that makes me……

scared.

I am sure it will all come out right in the end.

Tomorrow they are going to replace my leaking port a cath (again), give me splenic block shots to my back and try and get me to be able to swallow anything outside of water… which has not happened this week.

Right now, I still wanna run.

Preferably to a bar.

With fried food.

I might as well go out in glorious splendor!

 

 

I don’t really understand why some people study medicine and then practice it when it is clear they do not enjoy it.

Case in point: After several days treating a pancreatic flare at home, I decided I was just getting worse, so I came in to the ER at a good local hospital.  Usually this means they run some tests and I give them my paper work from the doctor I see in Dallas.

So, I got to the ER around 1:00 and was given a room straightaway.  I saw a very earnest PCP, so almost a doctor but not quite.  She took my paper work from Dallas, ordered blood and CT and X ray and she actually called Dr. Burdick in Dallas..

She was not keen to medicate me much but did work to get my pain under control.

Then all hell broke lose in the ER and I was left sitting there in pain for a good six hours.

I was told I would be admitted and I asked to please be given something for pain and nausea before going to my room because it had been so long.

Turns out, the PCP lady in ER had an out and out fight on my behalf  with the hospitalist who would be taking me to the floor.  The new lady did not want to give me iv fluids at all.  She also indicated that by the tests that I had had here,  I don’t have chronic pancreatitis.

That is why I bring all the paper work from Dr. Burdick and the images of my sick little pancreas.

New care provider hadn’t seen those and didn’t believe they were correct and did not want to hear what the other nurse care provider had said.

So, I went into detox. That means I sweat and feel shaky and horrible — along with the pain.

Then the hospitalist/MD dude who would be managing me came in. He also clarified that I do not have chronic pancreatitis based on their results.  I tried to explain and have him look at the Dallas reports and he told me they were all quite difficult and I probably didn’t understand them.

I lost my cool and explained I have as much post graduate education as he does and I can research, read, and I had a diagnosis from a flagship hospital and a top tier doctor.  I also mentioned I would be having pancreatic transplant as soon as I qualified.

Then  he proceeded to tell me it is dangerous surgery and I don’t really understand how bad it is.

I told him that I live with it every day so I know a lot about it and would be making my own decisions.

So, he told me he would give me about a quarter of the usual pain relief I normally have and that I would just have to deal with it.

When I got to the room I found out he had cut down many other of my regular meds. For instance, I can use Ativan three times a day if I need it.  He decided every 12 hours was good enough.

He took away my sleeping meds altogether.

This kind of behavior makes no sense to me.  Why would anyone go into a caring profession who does not care to listen, to read, and to become a part of a team that consists of patient, specialists and hospitalist?   I can tell you why.

It is a power trip.

And, although I have no proof of this; I believe, firmly, it is sexist and also anti Semitic.   I have gotten to the point where I no longer feel safe wearing my Star of David necklace.  But, I do put a religious preference in the box where they ask if you have one.  I have doctors and nurses that come in and say, “So, you are Jewish.. I had a neighbor once that was Jewish… maybe you know her.”

Sure.. whatever.

Or, “I used to work for a Jewish doctor; he was really great.”

But, those comments are from the ladies, the nurses.

When it comes to these floor chieftains, called hospitalists,  they are in charge of their domain.  They bang on their out stretched chests and tell you: this is how it is….

I have learned how and what I can do to deal with them but it does make the whole idea of going to a hospital that much more terrifying.

So, the next time, I went in and the doctor came into the room and said, “look, we know you, and we know you have no quantifiable data that let us make a good case to the admitting doctor (or insurance?) to admit you.

I then explain that my pancreas is too dead to show numbers at this point and I have paperwork to verify that, etc etc.

The doctor looked at me and said: I will medicate you this one last time.  You need to go to Dallas and check in to your specialists hospital if you want to be admitted.  It won’t happen here.

This whole scene is demoralizing and makes me feel I have done something wrong when I haven’t.

I have decided I would rather take every pill I have in the house rather than go to an ER.   It isn’t worth it.

So, no more horror stories of docs.

I don’t want to talk about it again.  It does not warrant the time I have given it here.

I have decided to only write here when I have more positive things to say.

I just decided I would finish this up and send it out as I started it at least six weeks ago.

Please give me feed back about your own experiences in hospital ER’s and with the stupid system of ER dr to hospitalist.

Cheers!

Life is beautiful….. you just have to look up and see it.

We did it.  We made it out of our normal orbit and survived a grueling drive to Northern New Mexico.

We are in a lovely, very old, adobe home in Taos.  Out of all our years of coming here we have never stayed in town, always up in the mountains.

But, being here is perfect.  Everything is perfect and what we all need.

All of the sadness and all of the longing for people we no longer have with us; and all of the heartbreak I personally feel for a body that no longer answers when I call it to work and move without pain, seem blunted here.

I hope that is what my family feels as well.  Of course things are rarely as easy as all that. Both of the kids have expressed that they feel sadness tonight, on Christmas eve/ first night of Hanukkah.

But we made a decision as a family to come here and not really celebrate the holidays, as it were.   We may light the menorah one night and have our latkes but that is about it.

I would have loved to have gone to the pueblo tonight for their dance or attended a service in one of the smaller Catholic churches.

But, being here is enough for my soul and my family says they are good with just being quiet.

This is time to heal.

This is time to write.

This is time to snuggle under blankets.

This is time to read and to  reflect upon the good.

Oh, and it is time for my 17 and 22 year old children to build lewd sculptures in the snow.  I am so proud of them.  Their father has trained them to have no shame and very little in the way filters.

We are supposed to have more snow tonight.

I hope so because we want to take the kids sledding on a run we read about in the national forest.

I feel like melted butter.

That is all for now. I will  end with the image of melted butter and the relief of being melted instead of frozen solid  with anxiety and fear and pain much of the time.

I want to let the light shine.

The light shines in the darkness. And the darkness could not overcome it.

John 1. (New Testament)

Amen.

I hear the phrase, “new normal” bandied about a lot these days.

I don’t really know what it means.

I think the idea is that whatever has happened to you or your family or even your entire country… (wink, wink, nod, nod) it is something you process and incorporate into your system and then pick up your skirts and keep going.

It makes sense for us Americans, doesn’t it?  We are the rugged individualists,  If you let yourself fall and stay down, you will just get trampled by the vast crowd of people who are rushing along with you—to all of their other endpoints… their  Normal.

As Americans, I think we have the collective  idea that if you move through something, with enough vim and verve,  you can come out the other side in one piece and just keep marching, even though your reality is that you  had both legs chopped off…  “Everything is fine here: just a flesh wound!”

Americans are completely and totally a culture of individualism and capitalism.  We are a product of the founding fathers’ (yes, they were all white dudes) morals and beliefs and the era of enlightenment in which they lived and thrived.

To be sure, it has served us well, this mind set.  I can’t think of how many times I have been told (by doctors and the general public) that if I felt bad I should just “get up and dust off my fanny and get going.” So, to this day, that is what I try to do.

I have tried and tried to find a  “new normal”.  I have tried to accept that my life is never going to be without pain or illness or chaos. I have tried to wrap my mind around this idea that my family, those who are still around, won’t have to see or experience any more of it all than I can help. This is my new normal and not theirs.  I don’t want to drag them down with me.

And yet, it seems like I always do involve them.

My husband has to pick me up, or I have to cancel this or that so I can go lie on ice packs or get knocked out so the pain doctor can try and shoot me full of nerve numbing stuff.  It doesn’t always work… but I am grateful that they try.

One new normal I refuse to accept is this idea the ER is just an extension on my house and hospitalizations are just normal and no big deal.  But the fact is, it is a big deal and I don’t want this to be my normal.  I hate it.

I hate the pain and I hate the hospital and the ER and what it does to me and my family. My children avoid me and my spouse takes very good care of all the tasks at home.  He can’t, however, be with me too much.  It is just not in his nature.  So, I have tried very hard to build a wall of protection and nonchalance about what happens to me in the hospital.  No one, except another chronically ill freak such as myself, can really fathom the time I spend, tethered to an IV with my bed alarmed and no way to even take care of my own basics.  Instead, I become needy and feel like I grasp onto people who are not mine.

I think this idea of a  “new normal” is just a cover up.. a scam.. for saying, “look, you are obviously messed up and not getting  better, so please quit talking about it and fade into the woodwork.”

On the African Savanna, where our ancestors  learned to kill or be killed, the weakest ones were left alone to either die in peace or feed the hungry locals, well, both, actually. We are herd animals.  When one is sick and then wanders off into the woods alone: other animals understand and respect that and perhaps they even respect the sickened animal that offers itself up to be eaten so that the herd can keep going.

The jackals come and that poor weak link becomes a fetid, glorious meal.

Life goes on.

The rest of the herd finds a “new normal.”

Well, let’s put is another way:

I don’t think my herd is going to shove me out the car door and leave me to the coyotes anytime soon.

However, I do see everyone that is closest to me, shifting gears so they can carry on the daily details of their lives without me.

I used to cook, a lot.  Now, when I ask my family what they would like for dinner, because I am having a good day and really want to cook, they say, “we have been feeding ourselves just fine so you don’t need to cook for us.”

Okay, strike that function off the list.

I need to find some very part time work and earn some income but my husband always tells me the stark truth.  I don’t have the capability to do that with my current level of health uncertainty. And, he is right.  For the last six months or more, I get about one good day out of every eight.  Then I try not to go crazy and go out and run around so I mess it all up for the next day.  Or, maybe I SHOULD dive headlong into that ONE day.  If it is all I get, then Mazel Tov! Blow yourself out:)

I just never know.

I have goals, and dreams and hopes for the future.  I have a belief system that tells me that there is a loving Creator G–d that understands my pain, my joy, and listens when I ramble on.

Speaking of rambling:)

I have been so remiss at finishing a blog piece these last few months that I have wondered if I would ever come back.

I have started at least three pieces, of which, this is one.

I think this one is going up but before I go I have another tangent I would like to veer  off on so please be patient!

I have been thinking of the “Holiday” season, since it is right upon us.  I am not really big on Christmas as a civilian, Hallmark holiday.  I think a lot of people find it obnoxious, whether or not they profess to be Christians.

For me, it is a bit different.  I have celebrated many a Christmas in choir and from the pulpit, and it might be hard to fathom, but since I let my little Jew self out of the closet (my family was mixed and I have been both; my sister is Jewish and my brother is just annoyed) I have found the Christmas fluffy crap even more overwhelming and insulting.

But really… they have a tiny Hanukkah section at Target.  I tell ya, we have arrived!

Back to my point…

Both holidays are about light.  Both holidays are about hope against all odds.

Both holidays are religious celebrations of varying importance to their own narratives.

Both holidays have roots that extend way back, and in the case of Judaism and Christianity–are rooted in the same origin story.

So, what does all of this tell us?  It tells us that against all odds, miracles happen.

The lights stay on long after they should have gone out.

Babies get born in the strangest of circumstances but still go on to have meaningful lives where they touch other people with all they have to offer.

You never know these things  as they are happening.  You are just in survival mode.

If the lights go out, there is no more hope left for a group of marginalized people.

If the Light of the world is not born in a stable while his people are being persecuted, there is no glorious morning and no birth of a King in the straw.

This is personal for me.

I don’t know if/when my lights are going to go out.  I do know that I am very weary of the struggle.

I also know that my primary relationships are suffering because of all this and I would take it away in an instant if I could; but I can’t.

I have learned a lot but I do not know if I have more to learn.  I can only say that if it is going to be this painful, I don’t want it.

There.  I said it.

I am not suicidal.

I believe in the light and the miracles, still.

I just feel like the candles are flickering and the work of birthing a new way of being and thinking are just far from over.

I don’t have any idea what is next.

I guess that is part of the story too, though.

After the light and the thanks and the food and the singing, how does one keep the light with them?

Prayer.

That’s all I’ve got for the present.

Prayer and patience and a healthy dose of the ability to shut up and listen so that maybe I can quit feeling like I am standing in a field of rocks and thorns and it is an endless maze of bruised feet, torn heart and sadness.

I can’t find my way out just now.

I miss my aunt.

I miss my Peyton.

I miss my mom and my dad and a lot of other things that have already left my life.

Will I ever be whole again in any sense of the word?

Will I find a “new normal?”

I guess I’ll just try and follow the light and assume there is a bit more oil for my lamp.

 

 

 

 

 

 

In Memoriam: Peyton Nicole Marsh

This little pixie from heaven was irresistible.  She always had a plan and she seemed to have it all figured out:seemed being the operative word here!

But that never mattered to me.  I just enjoyed every minute I had with her.  She sparkled and when she couldn’t sparkle, due to the cystic fibrosis that was eating at her insides, I usually managed to make her let her guard down. . Or at least let me tell her I knew of the pain and frustration of disease and hospitals and doctors and helplessness.  We shared that bond, even though I knew that her burden was far, far heavier than mine.

Sometimes she would even let me pet her ivory face and and put her sweet head on my lap as we watched tv.  This isn’t easy; because getting a heavenly made and heavenly bound pixie to let you pet her is not easy.  In fact, it could cause the potential petter, harm.  It almost certainly leads to a shattered heart. I liken it to the rarity of falling in love with a particular humming bird that has slowed long enough for you to lock eyes with it, to touch it, and to let you think, just for a minute that it could be yours.

For all who loved her;  they know what I am trying to express.  As I am sure that love led them to the exact same place.

I just feel so blessed that I was let inside.

This little angel tried in her last years to look scary.  She wanted people to know she was not the 12 year old her body led you to believe.  So she experimented with different kinds of armor. You see, what she lacked in size, she made up for in wisdom and the absolute oblivion of a young person that just hurtles though life, trying to taste from all of its riches.  She was way older than either 12 or 21.  I think she had a very old soul, whatever that actually means.  And I think she was stuck in a sort of long term adolescence that said, “What the hell? Why not try it all?”

And she did.

The year we bought a ski boat (We just had it that one year.) she wanted to go with us every time. She would cling onto the the big inner tube behind the boat and wanted Stan to drive her faster and faster.  She reminded me of a little tick.  She was glued to it and she grinned the whole time.

Also, when she started driving, she and her suburban assault vehicle were quite the team; there is no nice way to put it: She drove like a bat out of hell.

Once, I had to have her take me to the ER.  I really hated asking but of course she took me over to the one at Seton Williamson.  I thought for absolute sure, we would die before we ever got there!

As we finally made it there, she said she would park and come inside with me.  I told her, “NO WAY!”  Your immune system is worse than mine and you ARE NOT hanging out in an ER! So she told me she loved me and left.

In earlier years, when Peyton would go to Dell Children’s for a two week ‘tune up’ a couple of times a year, my daughter, Hannah, would crawl right up in the bed with her and they would play with paper dolls and horse figurines. Stan and I or her parents,  Gary and Michelle would make food runs. Hannah told me recently that she never thought about it being a hospital then.  It was just a place where her Peyton was so she went there.

Then,  before we even knew it, it seemed, there we were, shopping for prom dresses, or better…..   going on  fancy birthday travel, to the River Walk in San Antonio, etc.  and numerous other destinations all thanks to Michelle and Gary (Peyton’s parents).

On Prom night, I had the privilege to  do hair and make up for Hannah Beth, Peyton and another girl, who was not at all sure she wanted to go.

So I fed them cheese, crackers and a tiny bit of wine, that was carefully laced with mineral water. Peyton liked the wine and wanted MORE! but I have her a firm NO on that one

And then, after graduation, a graduation that featured Peyton’s incredible pipes on a song with the school’s rock band; it was all over.

No.  It wasn’t.  But, in place of school, Peyton had to figure out what was next. She had a string of jobs and found out that academically all the time she had spent in hospital rooms had really put a dent in her education.  But, I told her over and over and over, those were things she could catch up on very quickly because she was so damned smart.

I don’t think she ever found a comfortable spot for herself in the work and school world.

But it didn’t matter to any of us.

We just wanted her… here…. with us.

But, as it slowly became apparent that was not G-d’s plan for her, I am quite sure I am not the only one who had some choice things to say to the Creator.

It took my daughter a long time to understand and process all of this.  And now, she is processing it anew.

It isn’t fair.

It isn’t ok.

God, in my opinion, does not create suffering.

But God does teach us how to be compassionate to others.

And I think the best teacher I have ever known in the art of compassion is without a doubt: Peyton Nicole Marsh.

Maybe that is why her time with us was so short.

She definitely had a lesson. And she definitely taught it.

I know that I will keep processing what I have learned from the blue haired, tattooed pixie for the rest of my life.

Rest in peace, sweet pixie.. heaven is lucky to have you..

 

I have been messing about with several posts even though I made a grand announcement that  I was not going to blog for a while.

Yeah, well… here I am.  I can’t seem to sleep at normal hours and I thought this might be a helpful exercise.

I said goodbye to my aunt this week.  In many situations, that would not be such a close, close thing.

For me; it was and is.

Allie, (Alice Jane Owens nee’ Wiley) was a good deal more to me than ‘just my aunt.’

She always said she was my ‘udder mudder’.    I know that sounds weird but she liked the weirdness of it so that is what we went with.

When I was born, Allie was about 31 and knew she was never going to have children of her own.  I was the surprise child for my parents, who, although normally bright people, never understood birth control.  My sister is eighteen years older than me and was born while both my mom and Allie were teens.  My brother was born four years after my sister  and by that time my aunt and grandma had moved to Missouri so grandma could take over the nursing section of a special polio ward in Springfield.  In fact, she was the “poster nurse” for the March of Dimes and instrumental in getting it started.

But, when I arrived on the scene, Allie was living in Houston; working, and divorced.  She enjoyed her career in the financial world of bonds and whatever it was she did with them:) and traveled a bit.

My grandma was in Houston as well, still nursing. She was a charge nurse at Memorial Herman in the medical district.

We visited them a lot and Allie traveled on most of our vacations with us.

She was my playmate:)

I know I drove her nuts but she tried to be a good sport and color and play barbies and do whatever it was I was asking her to do to pass the time between San Antonio and Estes Park, Colorado.

She was always there for me.  She taught me different lessons than the ones my parents taught me.  But, most of all, I was impressed with the fact that she was a single woman who seemed to do fine in a man’s world and had this sort of life of her own that entailed late nights and trips to New York city.

Sometimes, she was more authoritarian than my parents and I would whine to my mom and dad about it.

She told me that I could, in fact, sleep in the dark.  And, that I did not need to have my fancy new tape recorder on 24/7 with me recording myself making weird noises and playing them back.

And  that recording interviews with my teddy bear was getting old.. fast.

She and I always bunked together.  I wonder now if that became sort of a pain for her.  I do remember her telling me to Please Hold Still.

But, she always listened to what I was trying to say and she always took me places when my parents were off doing their things somewhere else.  I never felt ‘alone’ on long trips when she was along.  She was my very own special all in one friend and adult.

She and my mom always had a complicated relationship.  They sort of nipped back and forth at each other.

I have to say, my dad was pretty patient with it all.  I don’t think he was when they were younger but by my time, they seemed to have it all ironed out.

My aunt was a party animal.

She loved driving and she loved drinking and she loved eating and she loved shopping: She was into every type of excess she could get into at one point or another.

But she was also game to try new things.  She tried downhill skiing with me and mom one year in Colorado.  I think it was a scary experience for her but she did it.

She even tried out my horse once or twice.

I will never forget my husband’s  (boyfriend at the time) introduction to her: We were visiting her in Houston and it was getting late on a Saturday night and we hadn’t had dinner.  She told us to get in the car; we were going to Galveston.  It was a pretty long drive from her part of Houston to Galveston but she didn’t care.  She called some friends and we all met up at Giado’s (well known and nice place to eat and drink on the island) and we had a late dinner and I don’t really remember much else.  I just remember my husband slumped over in the back seat sleeping as she drove her pink Cadillac back into town in the wee hours of the morning.

I also remember her letting me and my  four friends stay with her so we could go to the Texas Renaissance fair.  She cooked for all of us and got out her sewing machine and helped us get some of our costumes finished. My friends were all very creative and had made us all costumes but we weren’t quite ready.

She took care of our puppy when my husband and I had an incredible nine week honeymoon in Europe.   As a reward for her service, he ate the corners of all of her furniture.

So, fast forward a decade:  My dad died at age 66 of renal cancer.

She and my mom moved in together and then added my mother in law to the mix.  For almost ten years, they were the ‘golden girls.’

My kids thought everyone had three grandmas in one house.

When my mother in law decided to break up the threesome, mom and Allie stayed together.  My mom had been fighting two types of breast cancer and the second one was a real bitch.

Mom beat that cancer back into a corner and did experimental treatment that kept it from progressing for almost ten years.

When the cancer finally spread, it was my aunt who cared to her. She literally did everything possible to keep mom at home and comfortable.

Finally, when the cancer went to mom’s brain and she became too tough to handle, Allie had to stop.

That decision plagued her for the rest of her life.

After mom’s death, she rented an apartment in San Antonio and was trying to pick up the pieces of her life.  But, it was clear to me and my husband that the next years would be difficult for her and that she would sicken and die herself.

My husband asked her to move to Austin (Pflugerville)  and help us out with the two kiddos and his own mom, who was dying of Parkinson’s disease at that point . And since his own sister had taken leave of any obligations to her,  we were on the hook for a lot of care.

So, she came.

I know it was hard on her.  She missed her life in San Antonio.  But, I think that as she became more of an active grandmother to the kids, she began to enjoy it.  She was doing something she had never really thought she would do: take over the role of parent and grandparent in an acknowledged and appreciative way.

I know my son loved it when she picked him up at school.  He knew she would always have fresh baked cookies or get taken out somewhere. The two of them had some special jokes and I know she was instrumental in helping both kids recover from the deaths of my mom and Stan’s.

She took my son to the pediatrician and my daughter to get her driver’s licence.  I think she enjoyed doing the things she would have never imagined herself doing.

She cooked dinner for all of us as often as possible.

But, then, the time came that her body rebelled against her excesses.  She was diagnosed with congestive heart failure and had to have a pace maker put in.

Things kept getting a little more complicated from there on, out but still; she was always there and always wanted to know what was going on with us.

She still cooked and baked and did all she could.

She made friends at the senior apartment complex where she lived.

I don’t think she ever knew how strong or how brave she was.  I know for a fact she never thought she was pretty.  Her self esteem was never any good.

But, she continued to mother me: we talked almost every day; in these six years  since my mom passed.

So this is a tribute, a eulogy, a note of appreciation and thanks.

I love you udder mudder.

I will always miss your crazy self.

Please save a seat for me.

I am so glad you are free of a body that simply gave out on you.

Godspeed, sweet Allie.

I miss you.

I don’t know what to say.

I am really all out of words of late.

I really feel as though no matter what I try or do or say, my chronic pancreatitis just gets worse.

I was diagnosed!  Finally!  After four years and five doctors in two states and three different cities… I thought that meant I was home free.

I was offered a surgery option that while it sounded  scary, would completely fix me up.

All those times I was told, “it is a chronic pain issue and you will just have to solve it from that angle” were just bad doctors. They could not find the problem.  They were wrong. Oddly enough, the same thing is happening tonight, here in this hospital where I am admitted after begging and after asking them to call the gastro on call that I have asked them to call.

But wait, I am getting ahead of myself.

The diagnosis that was so hard to find?  Pancreas divisum.  That means my pancreas cannot drain properly due to the fact that it never formed properly when I was in my mom’s tummy. As embryos we have two ducts that drain the pancreas.  Before we are born, the ducts are supposed to fuse into one larger duct.  Mine did not.  One of mine is the width of a hair, according to the dr. who diagnosed me, and the other is simply collapsed.  My pancreas cannot drain at all.

I made it work for a long time but high calcium levels, which I had for six years before getting a parathyroid tumor removed, can completely shut that drainage down. Whatever, it wasn’t “just a chronic pain issue.”

It was/ is something serious and seriously painful.

But if a dr. cannot see the evidence for him or herself, they just refuse to listen.  They claim to know all about pancreatitis.

They don’t even want to hear what type I have.  They don’t care.

Because over 70% of people with chronic pancreatitis are alcoholics.

So, that is the working assumption here.

If only that were true: I would be having much more fun with this!

But no, you tell the dr. “pancreas divisum” and they say,

“Oh, I have heard of that.  How do you know you have it?”
Ah yes, then the CT to “prove” the thing.  Well dammit, that is what I just handed to you,  stupid money running around with an M. D., mine was only diagnosable by upper endoscopic ultrasound and by the one dude in the country who has invented the special scope to look all the way ’round the pancreas.

THIS ONE IS NOT ABOUT YOU!

You are not Dr. House and you didn’t find the diagnosis.  It was found by a hot shit dr. in Dallas and I have paperwork to prove it.

But no, that is just too much for their fragile Dr. Egos to take. They must re-discover the wheel each and every time.

It is a Zero Sum Game and the stakes are too high:   They are my life.

Since I have had absolutely zero help in Austin, I decided to go see a surgeon in Houston to get his opinion.  He removes pancreaii all the time and seemed very confident, bordering on dismissive and arrogant.  Without ever looking at my paper work or knowing anything about me, he pronounced: “It is clearly your liver that is the issue here.  You need a new liver and a gastric sleeve procedure so you won’t get so fat again.

Well, excuse the fucking fat right out of me.  What about the diagnosis in Dallas?  Did this dude even want to speak to the doctor who diagnosed me with pancreas divisum?

No.  It turned out he was going to order a CT scan and an MRI and look for himself.  Great.  I mean why work with colleagues when you can do everything yourself?

To be honest, I went on a roller coaster ride of emotions.  I mean, a liver transplant?  Wow.

A gastric sleeve procedure?

That part sounded great to me.  I have wanted weight loss surgery for years and been told over and over that I am too at risk for infection to have one.

So, I had the tests done and called the doctor in in Houston; he did not deign to call me. I was told to go straight to his bariatric surgeon and prepare for a full blown gastric bypass.

What?

What about my liver?

What about my pancreas?

Neither had shown any “importance” on the scan and he felt they could be ignored.

So I said a great big, “Thank you but NO” and regrouped, again.  I decided to go back to the source.  If Dr. B in Dallas had diagnosed me, then he should be able to give me some options.

So, I did it.  I just set up an appointment and decided to see what would happen.

What happened?

I broke my back trying to leave the house to exercise on July 4.

It is so stupid that it makes me laugh!

I mean, really?

How can something so utterly mundane turn into such a disaster?

What the hell is wrong with me?  Do I just try too fucking hard?

Maybe.  Maybe I should just be a stoner.

Yeah, I don’t know.  Moving to a mountain state has always been a goal of mine:)

Right now I want to finish this long-assed damned blog that has taken me weeks to write. I have not been able to complete it because it is so pathetic and because some things have gone down here at home that have made me doubt all that I ever thought I was.

Let’s just say the transitions have not been good here.

My beloved aunt Alice (always a cantankerous second mom to me) has been on hospice since March and we had to move her to a nursing home in June: It was June the 22, in fact.  I remember that because it was my birthday.

I have spent weeks fighting through the red tape of bureaucracy known as a Medicaid application.  It is really difficult.  You either have the 4 to 5 k a month to self pay at one of these places or you go on Medicaid and they estimate your cost based on your monthly social security income.

The business director at the nursing home told me where all the pitfalls would be and to prepare for them; so I did.  I prepared very thoroughly.

Two days after working a weekend: night and day on the document, she called me in.

She basically told me I did too much work and to lie on the form  so it would look better.

I was unimpressed but at that point sort of stuck.

Anyway, I also got my aunt’s  electricity, cable and other bills terminated and had to get her mail switched as well as have letters from the doctors at hospice to explain was she was not finishing her lease at her senior apartment.

They still took almost all of her $900 deposit.

I have quit fighting any of it.

There is no reason to.

My only goal is her comfort and ease through this last journey of her life on earth.  I want her to know she is loved and she is supported.  The rest of it is just noise.

But, breaking my back (vertebral compression fracture) was just not in the game plan.

I feel angry, sad and mostly misunderstood when I try to express what I feel like in all of this.  I feel trapped in a body that won’t cooperate.

I feel trapped and judged in a family that wants me to function as though nothing is happening.

I get angry  if my mood changes and I am accused of  not being  “logical” or consistent about stuff and I feel  misunderstood and let down.

The best thing for me to do right now is isolate.  I need to put my butt on ice and my body in bed to heal.

I am over dramatic and over wrought.  I feel like my world is spinning out of control.

I keep hoping I will get picked up by Dr. Who or Star Trek or the Aliens who obviously left me here by mistake.

Yes, I sound crazy.

I do.

I know that.

I am stopping now….

No more blogs for a bit.

I shall devote my writing to my novel…..

See you there.

 

 

 

 

 

 

 

I think I am a turtle.

When I was a little turtle, I had a soft shell and I was determined as hell to make a run for it, down the beach and into the water.

There were many other little turtles with me and we were all different.  Each of us ran towards our lives with varying levels of success.

But my awkward little legs went as fast as they could; and I made it!

As soon as I hit the water and swam in the big blue ocean, all on my own, I started to grow.

As I grew, my shell grew with me.

A shell is a good thing.

It is a place where I can retreat.

I can even sleep in there.

Or, sometimes, it just feels reassuring knowing I always have my own “back.”

Predators cannot penetrate my shell.  They can try, but now that I am big, they can’t get under there.

Besides, I know how to hide; how to blend in to my environment: sometimes I look just like a rock.

Other times I float along in the current and look lifeless.

But, I am not lifeless.

And to be honest, floating has never been easy for me.  I always feel like I should be going somewhere.

In fact, I am going somewhere.

I am now an adult turtle and I am making my yearly journey home.

I have to go there each year to stay in touch with the place I came from and to lay my slippery eggs.

Then, new lives  can begin.

When they make it to the ocean, I will swim alongside them and tell them of all the things I have learned:

I will teach them to float and to hide and to find abundance in our beautiful blue home.

And I will show them my big, grown up shell.

And, if I am very, very honest, I will tell them something more:

Sometimes things do get under that shell that I wish wouldn’t.

I get barnacles and free loaders on my back.

They see a firm foundation and latch on for the ride.

Some of them are even parasitic and try to make me sick.

But, no.

I won’t let them stay.

I will evict them one by one and then lay up on a log… all in a row with my friends….

Soaking up the sun.

 

 

 

 

“Great title, Katie” I told myself.

Two weeks on and I cannot seem to finish this post.  I will give it a go again this Mother’s Day morning.

I have had a few weeks that were relatively good, since my power port was put in. But, then I overdid it and tried to eat a few normal things so now I am having a flare of pancreatitis that caused me to be very sick. So, it is no surprise that  I spent  six miserable hours in the Seton Main ER last Monday which ended up in me being sent home, still in pain–and the doctor telling me he couldn’t treat me because he saw no evidence I have chronic pancreatitis.

I tried like crazy to explain to him why it is not visible on a CT scan and why it doesn’t show up in the blood work.  I even asked him to please read my chart and call my gastroenterologist.  But, he was having none of it.  He sent me home with a bunch of prescriptions for things I either have or I am allergic to.  And he suggested I go to a clinic the next day since he did not note I have a primary care doctor or pain management.  I have both and I had told him that!

He told me it was illegal to give me more pain meds without proof of a disease.

That was patent bullshit and I know it.  He had decided I was drug seeking and that was the end of it.

I am not doing emergency rooms anymore unless I have a hand written note from a doctor or a doctor calls ahead for me.  I have even taken the step of copying out all of the paperwork I have on hand from my pancreatitis diagnosis and writing an intro letter that includes the names of all of my doctors and my diagnoses.  Maybe that will help.  I don’t know.

Last week, I went to see a surgeon about having the egg sized hernia on my upper right side removed. My rheumatologist and my pain specialist had both said it needed to come out.  She reviewed my chart and said, ” I will not operate on you due to the fact that you are complicated and that it will probably come back because you are so fat.”  When I asked her what I was supposed to do about the hernia, she said, “Get it out when it becomes strangulated… i.e… a life threatening emergency.”

Nice.

It turns out she was a bit out of line and that my pain doctor’s referral for my port went to the wrong surgeon, etc. So, he is now referring me to the “right” surgeon so I can get the hernia removed; pre-emergency, hopefully.

But let me get back to that wall. The Berlin wall fell in November of 1989.  And by January 1990, the absolute high of the moment was wearing off a bit but it was still an ongoing process for those who lived in Berlin; the once divided city and great symbol of the Cold War.

When the wall came down in Berlin, in the East, people who had been locked into a gray scale world of suspicion, fear, deprivation, and monotony were able to do more than just  see the glittering towers of  the forbidden west. Finally they could actually touch them.

The Easterners, as the Germans refer to them,  had known there was something brighter on the other side of that wall but they also knew that to try and get to it, they very well might die in the attempt… (of course, many did).

Some people had endured the Communist regime’ by embracing the system.  They became the eyes and ears of the infamous, “Stasi” or secret police.

A friend of mine who grew up in East Germany told me that because her family would not renounce their Christianity, they were not members of the communist party. So, after Germany reunited, she and her mother went to look at their Stasi files.  The people who had been watching and reporting on them the whole time were their neighbors, whom they considered friends.

These people, the ones who have lived both under the heavy hand of twentieth century communism and then become a part of the glittering and yet confusing world of “democracy” are wounded:  I know many of them.

They have a real difficulty believing that anything that comes from an authority figure is not designed to make them fail.

They also have a sort of paranoia about being too trusting or too open or too optimistic.

They are suspicious in a way those of us who grew up in the west, just don’t really understand.

That is not to say they are not, in my experience, elated and curious and forever grateful that the system broke down; but they are just wary of having the same sort of calamity, brought on by misguided (at best) or despotic, neurotic, power hungry governments.

(Just as an aside here.  I have read Karl Marx.  I know the original ideas espoused by communism were good ones.  They just didn’t go well at all when put into practice by men.)

“So, Katie” you are thinking, “what is the point here?”

I am getting there; I promise!

One more thing, which is kind of funny and very ironic, is that in Eastern Germany there were no bananas.  So, when the wall fell down, the Easterners ran rampant through West Germany buying all the bananas they could get their hands on.

When I was living in Germany in 1990/91. I remember hearing people (we were in the Southern corner of the country on the Swiss border) moaning and groaning about Easterners taking their damned bananas.

In 1993, when I did an internship in Berlin for the summer, I could still hear the grumbling but it had gotten worse, “I wish they would put that wall back up and just feed them bananas.”

Yikes.

So, how am I like the wall and like the Easterners?  I have recently had a glimpse of the bright and glittering city I used to inhabit. You see, I came from the West originally. But, for several years now, I have been living under a different regime’, where all is grey and hopeless and desperate, and everyone is sad and angry or just plain mean.

But lately, I have made it to the top of the wall.

I saw there were a lot of people like me up there.

We are all just dismantling the thing piece by piece.  We tear off a chunk and pitch it to the ground, grunting with a combination of all our pent up anger and rage.

It appears as though we might have actually won our freedom.

But, what does that mean?

What is freedom going to look like?

It is going to be different than before; that much is obvious.

It will never be the complete freedom from worry and pain and mortal danger that we earlier took for granted. We have our eyes wide open.

We are jaded now.  Jaded by our bodies having turned on us in surprising ways and by a medical system that chews up and spits out those who cannot be easily “fixed.”

We take nothing for granted and we are very suspicious; paranoid is perhaps a better word.

Every time the pain gets overwhelming and the gray curtain of iron that is our prison, descends, we are afraid we will never be able to get back to the top of the wall and make it back to the other side.

But, lately, I have begun the work to build a little home for myself in the West.  I am rebuilding my own walls so that I have a view.

I have just begun so the work is ongoing and will be for a long, long time.  But the idea is that I have hewn out a chink in the Berlin Wall that is Katie sized.  It is just big enough for me to get through each time I have to go back to the East.   On each trip, I will learn to take more and more supplies that I might need when I am behind the curtain, on the east side of the Wall.

These supplies, which are psychological and therapeutic in nature, will give me what I need to survive each trip back and forth.

And hopefully, if I am lucky, I can get some bananas to take back to the others:)

 

 

 

 

I just did a very bad thing.  I read through a post that I never published.

I remember now why I never published it.

Now I am crying.

Well, enough of that shit.  I need to get my chin up and go on.  There is no time for self pity or sadness or any of that.

My latest and greatest medical achievement has been getting a port a cath on Thursday.  A  port a cath is a little button next to your clavicle that has a connection running through it and straight on down to your main artery.  It is a permanent way to get an IV.

I have needed this for a long time.  But, as is usual with me, I have not healed very well.

I am red, swollen and in pain way past when I should be.  I ended up on antibiotics.

I have no real idea if it is getting better because I still have a temp but then, I often do run a temperature.

I feel worn out and worn down and weepy to be honest.

Yesterday I just slept all day and all night and ate vegan donuts.  It was nice.

But, I have to get up and running. There are things to do and I need to be on the go.

Something interesting happened on Saturday: I became my mother!

I had to laugh through the tears.

Because I was feeling so rough and because my family did not want to hear about it, I was talking to myself.  This is something my mother did a lot of!

It used to drive everyone nuts!

Now I have done it.

My husband told me that the kids (and he) thought I was “on” something or that my behavior was bothering them.

After a bit of probing I discovered the problem was that I had been talking to myself.

The question is, why was I doing this?

I figured it out.

I needed my mom.  I get really desperately lonely with my illness sometimes and I miss having my mommy.  She may have talked to herself but she always listened to me.

I think my subconscious was channeling her by talking.

Weird? Yes. It is very, very weird! But I was trying to give myself what I needed.

I don’t get it at home.

That isn’t anyone’s fault.  It is what it is.

So today I started to get in the shower and get dressed and such and I realized I was doing it again.  I even started to narrate what it was I was doing and remark on how I felt.

Oh no!  I realized I was doing it again.  If I am not careful I will do it all the time and my family will really have enough of me.

So, I am practicing being quiet.

My thoughts, my comments, my feelings, all need to stay quietly locked up in my head.

I figure it is safe enough if I let  my inner mommy talk to me in there. I know she still cares.

And I know she is never too, too far away.

So, mom, I need your input.

Daddy, you too.

My life is kind of scary and uncertain and I feel lonely and sad.  You two were my protectors: my great wall of China.

I still need to talk to you.

But, let’s keep it on the down low, okay?

I know you can hear me anyway.