Scenes from the Immune System Wars

INSOMNIA

April 5, 2016

So, here I am.  It is stupidly late and I have maybe had two or three hours to sleep.

I would like to write this missive into my blog but I can’t because the internet keeps crashing. 

This is truly a modern dilemma.  How in the hell can I get through a night like this without internet access?

It is inhumane!

I have attacked the problem with every bit of my computing power.  The computer was underwhelmed.

The only satisfaction I have is writing this and hoping against hope that I find it again so I can stick into the right file.

Why do the chronically ill have insomnia?

Do we not get out enough? Do we not think enough?  Do we wallow around in our pain too much?

I really don’t know. 

All I know is that when I do sleep well, it is magical and I never ever want to wake back up.

I have had two sleep studies done.  They wire you up like a bizarre zombie and then tell you to go to sleep ‘naturally’ to see if you have a  diagnosable issue that is causing your sleep deficit.

It is really creepy because there is a guy in the next room, watching you on camera. Both times, my diagnosis was the same: insomnia for unknown cause.

There are no machines or lovely devices that will send me off into dreamland in an reliable way.  This is just the way I am built.

It dates back before I was diagnosed with any rotten diseases.  It has been a struggle to sleep for as long as I remember.  My only period of reprieve was when my children were small and I was working 3/4 time at the University.  I was simply too tired to care at that point.

To be totally honest, I used to love cuddling the children and watching them sleep.  Samuel and I co-slept until he was five.  It was too much and not great on my marriage but I loved having his little baby body so close.

My sleep is so erratic and weird that my husband doe not like to spend the night in my bed.  He hangs out a while and then removes himself to the guest room.

So, mostly I am alone.  I have an attack chihuahua mix, Penny.  But even Penny bites when I try to cuddle her at 3 am.

And so, here I sit. 

I have taken all the drugs I dare. 

I have wet towels for my arms and sides because they itch uncontrollably.

So what can I do tomorrow to make this different? 

I think it is time I start walking every day.  I am incredibly weak from five hospital stays since November.  This last one, which involved my lungs and heart (surrounding the heart) area holding onto fluid, scared me pretty badly.

I have to take control of this body of mine as best I can.

I had an up close and personal meeting with my G-d that week and I know  that I have to make changes to survive: 1. I have to deal with my depression and fear head on. To this end I already found and had an intake session with a new therapist.  She practices hypnosis and EMDR, which are both designed  to help with the type of pain I have as well as work through the trauma I have  accumulated in hospitals and ER’s these last few years.   2. I have to work to free myself from a lot of my prescriptions and western drugs to make me feel better.  I feel pretty convicted that at the end of the day, many of them simply exacerbate the problems. 3. Have very few expectations of myself.  If I am home and healing, that is a legitimate use of my time. 4. I only see two doctors a week: no more and usually no less.  If I stick to this, I will remain more sane and be less likely to confuse myself and my doctors! 5. And last but certainly not least: find joy!

This is a fairly tough and comprehensive list but I hope it is realistic.

I learned last week in the hospital that I didn’t want to die.

For the two days I had trouble breathing  I became pretty scared.  I did not know if I was going to be moved to the ICU or if I would just stop breathing.  I realized that even though my life has been really painful and really hard these last years, I still want to be here.

I am not finished yet.

So,Lord willing and the creek don’t rise, I plan to stay.

I have not written too much these last few weeks.  To be honest, I didn’t feel up to sharing what is going on and I have not felt strong enough to sit and let the words flow.

I keep thinking of the phrase, “long, dark night of the soul.”

And I keep hoping it will be daylight soon.

Today, there is daylight and I can see enough to write.  But, I don’t want to come off as complaining or as over dramatic.  I often feel as though I have said too much.. been too honest, etc.   I guess this is just an occupational hazard of being Katie.

So, chronic illness is… chronic.

And it doesn’t matter how many chronic illnesses you have; you can have more.

The math just isn’t fair, is it?

Well, I am quite certain the math isn’t fair to people in all kinds of ways in this world.  I am only experiencing my version, in my time, in my way.

I have to remember, always, that my struggle is real to me and to those who love me, but that for many, including my family and friends, enough is enough.

They cannot see or hang in there for the roller coaster ride I am on.  They only wonder, “What is it now with her?” or “Why doesn’t she get better?”

What I am saying here is never put in an overt manner: It just is.

People quit calling you and they quit asking if you are better.  The answers are just too overwhelming, even by association.

Trust me, I am overwhelmed on a daily basis: so I get it.

So, what can I take away from this lesson?

Be careful what you share, with whom and how often… kind of like sex.

I mean that. Sharing at the level I am at, which is often really hard, is really intimate.

I have finally found that I don’t want to be intimate with that many people at once!

My husband and my kids are my rocks and my redeemers.

They give me purpose on the darkest of days.

When I want to literally cash it in, I remember that they want me here and that I am worth the trouble to them.

I hang onto that, pretty tightly at times.

On better days, I make plans.

I make plans for the next day or the next week or for what I want to do in the next few months or year…

Then, as the plans get undone, I tend to get depressed and angry.

So, what can I do about that? I can either continue to be a Fool, who believes that it will all be fine, somehow… someway.. someday… or I can live moment to moment.

I am not good at the moment to moment thing but I am learning.

It may be blindingly apparent to those around me that I am sick and seem to not get better, but it is always news to me!

I have some sort of self protection mechanism that keeps me from comprehending that most of the time.

But this latest go ’round, with chronic pancreatitis, has left me breathless and defeated.

On the good days I get to have, I want to run as fast as I can and as far as I can away from any mention of this problem.

But, I am learning that this one has me by the yayas ( girl yayas so… that doesn’t make sense).

Anyway, I have not had a fight this nasty that I can remember.

Despite all my best laid plans, I keep getting really, really sick. The pain is uncontrollable and I cannot eat or drink or make it out of the house.

So, in my last two blog entries I have explained that although I was a candidate for a potential miracle surgery, I was turned down.

At the time, it made sense.  After all, if a doctor doesn’t want to do a big surgery on you, that is a good thing, right?

Well…

I don’t know.

As I go back over the entire scenario in my head, I realize that some things were amiss.

I also realize that without the surgery, I am not going to get a lot better.

At least that is what I understand at this point.

So, life threatening surgery or constant pain and turmoil?

The choice is easy and obvious for me: I want the surgery.

But, I cannot just wave a wand and have it done.  Especially since I was turned down.

I have gone back over the documents from the visits to the specialists in Dallas and back over my own state of mind at the time.

I didn’t come off too well.

Yes, I have autoimmune disease and primary immune disease.

Yes, I understand there is a chance my liver will not rise to the challenge of accepting new islet cells transferred from my burned out pancreas.

But, and I think this is important: I am not crazy.

Well, not crazy in the way that I came across to those doctors.

You see, I have done my research, a bit late, but I did it.

Part of the vetting process for this type of surgery is whether or not the doctor thinks you are psychologically strong enough to withstand the horrors of the experience.

I am pretty sure they flunked me on that out of hand. It isn’t fair or nice that happened but I am sure it did.

It is a long story but suffice it to say, I was a shivering, crying wreck every time I saw one of those doctors.

When it came time to pull together a team of willing specialists, they decided I didn’t have the ‘right stuff.’

I may be  all wrong about this but I don’t think so.

It all came at me pretty quickly.

I was diagnosed in November, after four years of suffering, and then multiple, back to back hospitalizations.

When I spoke with the chief of the transplant team, I had been barfing in the car for three hours.

Also, the hepatology (liver) expert on the team knew me from earlier visits here in this area, where he has a once a month clinic.

He had been unable to diagnose me but at one point had given me his e-mail address.

When I was hospitalized in June for high liver enzymes, I was supposed to be transferred to his hospital in Dallas.  Unfortunately, the Scott and White hospital in Round Rock was unable to manage that or to even call him when I asked.

So, stoned and frustrated, I e-mailed him.  I may have even done it a couple of times.

When I saw him after that he told me, “you need to work on your doctor and patient protocol.”

OK.

The head of the transplant team in Dallas who turned me down mentioned that this particular doctor, the hepatologist, was one of the main reasons I was turned down.  He didn’t say, “it’s because you are mental!” But, he did say my liver was unstable.

They could have easily brought me in for further testing.

That was not offered at all.

So, it has taken me a few weeks of agony to piece this altogether.

What can I do?

I am going to slowly and methodically try to be reviewed from the bottom up, by another team.

If their answer is also no, then that is the answer.

I am hoping to be reviewed by the team at University of Texas Medical Branch at Galveston.

We will see what we see.

In the meantime, I shall continue to be a Fool.  I shall continue to turn my blind eye to all the crap that is going down with me.

But, I will not run and hide each time I hit a pot hole.

I have to give this a go again, even if it is humiliating and painful and expensive.

I humbly ask for your prayers and/or support in this.

I can definitely feel it when the “vibes” get going in a positive direction.

I am no virgin to this process now.  I know it is ugly.

I know the surgery is ugly as well.  But, I am ready to see what happens.

I want my life back.

It may be a flawed and chronic life, but if I can eat and not be constantly nauseated and in horrible pain, I will take it.

Thanks.

So, I cannot believe it has only been a little over a week since I learned I was not a candidate for the pain relieving pancreatic surgery.

It has all been a roller coaster ride: emotionally and physically.

It has also been a very rough time for my family.  They did not know they were going to be going on roller coasters any more than I did. It is scary for them too.

I have been learning more about that and trying to make room for their fears and responses and general abilities to cope.

For my son, I have found a great place for him to get some very focused therapy that concentrates on having an ill parent.

For myself I have a new and very interesting ‘healer’ and counselor to try out next week.  She does all kinds of stuff that I am interested in learning about.

For my spouse there is whatever he wants to find.  I cannot find it for him and I am letting that go.

I am chugging along with my ‘to-do’ list from my last blog entry.

I have seen the two most trustworthy doctors I have and gotten some sound advice and I am slowly but surely starting to eat a bit of solid food again.  However, the goal here is massive weight loss so I am very, very careful what and how much I eat.  If I eat too much, my gut freaks out anyway so I have a built in stop mechanism!

I am up and dressed and getting out and having goals every day.

That may not seem like much to a non-sick person but for a chronically ill person coming out of a long bout of illness, it is huge.

Do I hurt? Yes.

Am I cutting back on pain meds? Yes.

But, I am trying to find that sweet spot where I listen to my body and not the negativity and self shaming in my head.  In the sweet spot, I hear things like, “Katie, you just did a really difficult task. Go rest a bit!”

I am clearing out a ton of paperwork and photos,etc. from my parents’ estate that have been stuffed into a bedroom closet in my house for five years.  It is a good thing to do. I am ready.  I wish like hell they were here but I am okay with the fact that they aren’t.

I have amazing memories.

Today, when the therapist that is going to see my son came to the house for the in take session, I told him I have autoimmune disease and primary immune disease.  He heard, “autoimmune disease.”

He proceeded to tell us he did a medical rotation in school and knows all about autoimmune disease and that it is %95 psychological.

I almost told him to leave.

On the outside I showed nothing.  I simply said, “I have diagnosed disorders that are treated by specialists  with pretty serious medications.”

He then proceeded to ask about the amount and type of pain medication I am taking.

I tried to explain and he became preachy again.

As he got ready to leave he asked if there were any constant treatments I am on.

I said, “Yes. As I was saying, I am on weekly infusions of immunoglobulins.”

He did not know what it was so I tried to enlighten him.

Clearly he was out of his knowledge range.

That is fine!  I don’t expect ANYONE to have heard of a disease that effects so few people.

But I also wish people would be more sensitive to NOT knowing it all.

He is very intelligent, very well educated and well meaning and ultimately I decided what he thinks about me probably doesn’t matter. As long as he doesn’t tell my son I have made up my diseases we are fine.

But, it just brings me back to the reality of life as a Zebra.

No one really “gets it.”

And, there is no reason for me to expect they will.  I just want a modicum of respect.

I could begin to surmise that it is a feminist issue.

I could go all academic on it and write about that.

But I won’t.

So, here I am.

I am one week out from having been told no.

I have learned that I can recover and move on just like I have before.  I have learned that no matter what I do I just have to do it one day and maybe one hour or one minute at a time.

I have learned that if I start the day with all the right ingredients: prayer, meditation, exercise, perfect nutrition, etc.

I run like an almost well person.

But, the days will come  when I don’t run so well and my oil needs changing.

I guess I need to store all the good things for those days.

Until then, I am going to not worry about the naysayers and the arrogantly ignorant.

They have nothing to do with me and I have nothing to prove.

I am self contained and self aware and competent.

I do not need approval.

I have all that I need from a higher power…

I am moving right along, at the pace of a snail.  This week I had a meeting with the transplant doctor in Dallas.  It was a rough day all ’round.  I was in pain and nauseated as all get out.

My poor husband had to do all the driving.

And, what I thought was a yes/no /go meeting on the surgery was really just a first consult with the chief of the transplant program.  Basically, he had not seen any of my paperwork and was just meeting with me based on the fact that I had been recommended by Dr. Burdick.

I have an idea or two who dropped the ball on the information getting part of the equation, but it didn’t really matter.  We were there so he checked me over and asked me to go through my own history.

I did not come off too well. I had been crying from pain most of the way up there and was sleepy from nausea meds so I was a mess.  Dr. Kim, the transplant surgeon, said he is not comfortable with proceeding with my surgery until he speaks  with all of my specialists and has a better picture of how my body will potentially  handle this surgery.  He actually said, ” I don’t want to kill you.”

That sort of gave me pause.

It also scared the hell out of me.

Without the surgery, I will have to continue living the way I am now, and that is simply not acceptable.

Right now I am bloated like a dead fish.  My belly looks like I am going to give birth to an eighteen pound child at any time and my feet and ankles are more like an elephants’ that mine.  My hands are too swollen for any of my rings and my tummy is tight and hurts like hell.

I can only eat liquid nutrition and maybe the occasional egg and toast.   Popsickles are my favorite food as of late.

This just is not living.

I have to take so much pain and nausea medicine that I am a dope and sleepy most of the time and my short term memory is shot.

I don’t like having no control over what happens to my body.  You would think I would be used to it by now, but this seems like a newer and bigger challenge than some of the others I have faced.

Trust me, I am so grateful to have a diagnosis.  I just really wish it were sooner and I could have saved more of my pancreas…

But, that is a long gone wish.

So, I have to stop, reset, reload and move forward.  I cannot let all of this take me down.  I have a family that needs me.

Yesterday, my son crawled in bed with me and said he needed me to hold him because he was afraid I might die.

That was too much.  He doesn’t need to be thinking about all of that.

I am working on getting him the therapy he needs and on being specific with what he does and doesn’t need to know.

I cannot let the depression or the fear or the pain or the nausea over come me.

I have read of people being hospitalized for up to one month before this surgery .  I have also heard of people who go on a gastric feeding tube only because they cannot digest food at all.

I don’t want to be any of these people.  I am scared of it.

I know I can survive just about anything but that all sounds pretty overwhelming.

I can do this.  I know I can.  This will not kill me.  It will make me stronger.  Apparently that is the agenda G-d has going with me anyway, “You, Katie, get stronger… ugh.”

( I realize I just made G-d sound like a Neanderthal).

I have always identified with the story of Jonah when it comes to my relationship to the Divine.  I have to be puked up by a giant fish for G-d to get my attention.

But, why?

Why am I being puked up by the giant whale again?

That really doesn’t square with my modern take on theology or divinity or of any of it.  I mean, G-d is an insensitive jerk if She uses this kind of stuff to put people on notice that they somehow need to reach deeper and farther into themselves than they ever knew was possible.

What up with that, G-d?

Go pick on someone else!

Well, maybe G-d is not in this picture at all, or maybe She is on my side and has helped me find all of the help I have been given: i.e. good insurance, a lovely family, access to good medical care, a mind that is able to keep up with what is being said and is able to read and ask critical questions.

That may be as good as it gets.

Right now, I am paralyzed with fright.  I am completely over wrought at the thought that I may NOT be approved for this procedure.  Without it, I don’t know what will happen to me.

Well, I guess I do know: It will kill me, eventually.

All of it, in the end, will kill all of us.

I remember a silly line of my dad’s.  Whenever Daddy heard someone had died he would say, “was it serious?”

Yeah well, serious enough.

So, how to go forward?  I haven’t the slightest fucking clue.

1/19/16

This is a very appropriate day to pick this up again and finish my post.  I heard back from the transplant doctor this morning.

I am not a good candidate for the surgery.

That’s right.

No surgery.

He said that with my liver issues he and the liver specialist feel that the islet cell transfer might send me into liver failure and kill me.  He does not want to do that.

He pointed out that I am too young for that kind of last ditch effort and that he thinks I can do other things to manage it.  Well, I have to do other things to manage it.

But the weirdest thing happened after I hung up the phone and cried a bit:

I felt like my prayers were being answered.

I have had a morbid fear of this surgery.  That fear has been getting larger and larger since last week.  I really have had a bad feeling about it.

I was going to go through with it if it was recommended but I kept having this feeling that I would not be coming back home.

What next?

Tomorrow I am having another (attempt) to block some of the pain by injecting steroid into the back where the pain is located, sort of.  The doctor who did it the second time is doing this one and feels like he has a better idea of where to go and how much to use to bring me some relief. So, although I loathe steroids, I will give this a go.

I have a call in to Dr. Burdick, in Dallas, because he can do a much more targeted pain block by going through my mouth and placing it right over the trouble area.  I am going to pursue that too.

There is still the option of the spinal cord stimulation device and the possibility that it could help.

And, then, most important of all; there is me and how I choose to handle this.

I am not defeated.

I can lose weight;  (I have been but not in a healthy way) and I can learn what foods cause inflammatory responses for me.

I can exercise.

I can meditate and pray and be a lot more in touch with the center of my being than I have been.

I can also do acupuncture and acupressure and all sorts of things that are not traditional medicine.

I am ready! Bring on the woo woo weird stuff!

No, actually, I have a good, dear friend who has one foot in the alternative healing community and I have already asked her to be my guide.  She is going to make sure I get hooked up to the right people.

I am going to get better.

I may still have pancreatitis.  I probably, as the doctor suggested this morning, have bouts of autoimmune hepatitis.

These are bad, and damaging diseases.  The only way to fight back, it seems to me, is to not fight so hard but to become a ninja.

By that I mean, I can learn to slide in, out and around the workings of my own body.  I have to baby it.  I have to treat it well and I have to make it behave!

So…

That’s it.

Today, I will look forward and not back.

I will remember that this body of mine, though flawed, has made it for 50 years.  I can definitely push more out of that.

I am going to get strong and at the same time try to stay soft.

I want to listen to what Katie’s body has to say without freaking out and without googling anything!!!!!

So, Carpe Diem!

Or Carpe’ Pancreatum…

 

 

 

So, here I sits in the hospital again: day 3. It is Christmas eve and I want out of here.
I came in to ER Monday evening because I was experiencing a big increase in pain, and other nasty symptoms. I really had no idea that they would keep me.
For the entirety of this lovely visit I have only seen hospitalists, no gastro Drs..
This is not cool.
On my own, however, I have made an appointment with Dr. Pham, the local pancreatic specialist, for early next week. I pushed my way in by saying I was currently in the hospital again and needed to be seen: ASAP.
I have also continued my pursuit of the big guy, the head cheese, the mob boss–Dr.Burdick, in Dallas.
He called me yesterday and told me he is transferring my case to Dr. Kim, who is the head of the pancreatic transplant team. First, a side note: they don’t actually transplant a new pancreas into your body. A Pancreas is sort of a one shot wonder. What they do transplant is the Islet cells, the little guys that make insulin, into the liver. This is really good because it means that although someone ( me! ) will become diabetic after the pancreas is gone, the remaining Islet cells, swimming around in the liver, will give the body protection against the worst case scenario, which is, brittle, or uncontrollable, type 1 diabetes.
So, that is the transplant part.
As it turns out, the panky ( affectionate term for Pancreas) does more than just process insulin. It also controls the release of digestive enzymes. Without these enzymes on board, it is impossible to break food into the different nutrients we all need.

In order for that to work, the post pancreatic/ islet cell producing patient simply needs to take supplements with each meal, for the rest of their life.

I am down with that.

Apparently the cost of doing nothing about this could mean inviting pancreatic cancer in. I dont want that.

So, in a way, this is like getting a total mastectomy before you even get a cancer diagnosis.. Because you have the braca gene and there is probably no escape.

It helps me to think of it that way. Because right now I am having a hard time wrapping my head around this.

ONE WEEK LATER:

I never did finish that post.  I came home and made it through the holidays in a fog of pain pills and fatigue.  I have now wrapped my mind firmly around the idea of a pancreatic removal (probably spleen and stomach parts.. depends on my anatomy) and islet cell implantation.  In fact, I want it done.. yesterday.

I am in a situation that is rapidly veering out of control.  I cannot eat solid food and I get sick from liquid nutrition drinks at this point.

I have upped the pain pills to the maximum.

I am so bloated it looks like I am eleven months over due with my eighteenth child.

Something has got to give.

I saw the panky dr. here in Austin on Wednesday.  He confirmed that I need the transplant surgery and that I should have known sooner ( don’t know what to do about this) that I had a congenital defect.  Basically, the other drs never injected enough dye or looked far enough to see what was under their noses all along.

I also saw my rheumatologist and he was very compassionate and told me to go with my instincts  and seek the care I need when I need it.  (Maybe I should listen to that.)

I am thinking I cannot survive a month or more of waiting for this surgery to happen.  But, good things happen on Facebook.

I have learned in the course of the last few years that there are sub groups for every ailment, no matter how weird.  I have hooked myself up with some folks who have had the same procedure at the same hospital and they are walking me though when to call for help and who to call.

I actually called Dr, Burdick, yesterday and he said I could go in to ER here or in Dallas.

Stan (hubby) was somewhat reluctant, and rightly so, to drive me to Dallas and just have me admitted with no plan.  So, I am still here, all night.

I am going to make some more calls in the morning.

I feel like I have reached the end of the end of everything.  I don’t have anymore to give.  I just want to be put to sleep.

Perhaps this is good.  I am no longer scared of the surgery.  It is horrible and nasty and very scary but I have no other way out and it might just probably give me most of my life back.

I am trying to remember to pray and to breathe and to reach out and ask for help.

But, it’s hard,

Sometimes when I reach out, there is no one there.  And sometimes when I pray, I hear nothing but the echo of my own plaintive whining.

I am worried sick over my kids and family and what they will do if I am gone too long.  My son needs help and my husband can only do so much.

My aunt is not well and there is no real help for her.

I just cannot hold all the strings together.

I feel like my life is a ball of yarn and I have dropped it and it keeps rolling and unraveling away from me.  I am scared that I don’t know  how to get it back.

I realize this is raw.

Sorry.

It is 4:55 a.m. after another night of pain and nausea and watching bizarre videos.

I am fresh out of love.

I need help.

I need prayers.

I need action.

God bless the lonely and the pain ridden.  God bless the doctors who deal with us.

God bless the families of the ill.

God bless the soft puppy dog that sleeps next to me all night.

I want to trade bodies with him right now.

Right now.

Licking my butt and eating dog crunchies every meal looks really, really good to me right now.

 

 

 

 

 

 

 

 

What a strange holiday time it has been this year. Not that I think there is any such thing as a “normal” holiday, but truly, this one is a weirdo.
As a background, the weather in central Texas this year is unseasonably warm, even for us. It seems odd to not even need a sweater in December. But, I realize this is an El Nino year and besides that, we have global warming to thank for increasingly strange weather patterns.

As to the exterior, or wrappings and trappings of the season, things have been strained, at best. There is no veneer of sanity here.

I have been in and out of the hospital with my damned pancreas and when out of the hospital, still in pain and nauseated. I cannot eat normal food and have not had very many nights of decent sleep in the last month or so.
All of this drags me down and unfortunately it takes my loved ones down too.

No matter how hard I try to keep things cheerful, they know. They see me hurt and know I don’t sleep. It is obvious to everyone I am popping more pain and nausea pills and that I cannot eat what I cook.

The weirdest side effect I have had of late has been a crazy amount of sweating. It may be menopause but I don’t think that would just kick on one day and go non-stop.

Something is seriously amiss.

This means another doctor and another set of tests and another set of questions. Should I google it?
Should I read up on what my latest blood work may be pointing to?

Arrgh.

Probably not.

I can and I do, but I really don’t want to know.

So, I will make those appointments with all the right folks and go from there.

Oh, and when and how am I going to go about getting a port a cath? (Indwelling and permanent IV line). I really need one. But, that is another doctor and another set of tests and another outpatient operation.

And so, on it goes.

The kids are anxious and my husband is tired. And although I know I am not at fault for making their lives more difficult, it still weighs heavy on my heart that my health is such a difficult thing for all of us.

Jingle…

I don’t feel much like jingling.

So, I have been manufacturing some jingle…

We have made a ton of cookies and a ton of latkes and have had a ton of poorly wrapped packages that I purchased online. We celebrate Chranukkah (Christmas and Hanukkah) at our house so we try to embrace it all.

I have made it a point to buy something silly for everyone on my list. I got the girls, (in their 20’s) footie pajamas with hoods that have ears and my 16 year old son got a Jeddai snuggie.

Our cookies have eyeballs on them and look a little satanic and strange.

This sort of thing makes us happy around here.

And, it is important.

It keeps us all grounded.

When my aunt suddenly has to go into the ER and spend the night in the hospital, I have to do what I can to keep us from all going nuts.

When our family of origin become the last people on earth who would lift a finger to help and it hurts, it pays to remember the good.

There is a lot of good.

My kids are healthy!

My husband is employed and healthy!

We have a nice house and nice animals and we can pay most of the bills!

None of this is stuff we should ever take for granted.

I used to think that when you reached a set point of ‘bad stuff’ you had hit your quota and there wouldn’t be anymore.
Yeah, well…. that was a long time ago.
I know better now. And I also know that we are damned lucky.
But that still doesn’t make me too excited about jingling all the way…
After all, I think jingling is highly over rated.
I am more of a light it up and burn the house down with brightness kind of girl.
But, since Hanukkah has come and gone for another year and Christmas is a few days away, I will give it my best shot and try jingle, jiggle (I’m good at that!) and twinkle all the way.

Ho! Ho! Ho!

I have not written in a bit so I thought it was a good time to catch up. It is 4:00 a. m. in the morning and I am infusing my liquid gold so why not write?

A little over a week ago I had my date with destiny in Dallas at Baylor Medical Center. A well known and talented gastro dr. performed an Endoscopic Ultrasound and then an ERCP procedure on me. Miracles of miracles.. he found out why my upper right quadrant of my stomach area has hurt for four years. But, as with all real world miracles, the news is not all good.

So, I have something called Pancreas Divisum. It is a genetic anomaly that occurs during gestation and is found in approximately 10% of the population to varying degrees. For most, it is never an issue, but for some of us lucky ones it leads to a condition known as chronic pancreatitis. In my case, the length of time to diagnosis has left me with scarring and a good possibility of either having all or part of my pancreas removed, thus becoming a diabetic, or, the C word.

My chances of getting pancreatic cancer are pretty high.

First, let me define Pancreas Divisum. As the name implies, it means there are two, instead of one, ducts that empty the pancreatic juices back in and out of (poor description) the biliary tree and liver. Simply put, the digestive enzymes and bile can back up and cause significant problems. In my case, the ducts did not fuse as they should and left me with one the diameter of a hair and another one that is significantly larger but also inefficient.

“How?” you might ask, “has this problem been over looked in the last four years of ERCP procedures, tests and more tests by many “expert” doctors? Good question. The talented man that did my surgery was at a loss to explain why it had never been seen. Apparently it is hard to obtain an image of this sometimes on even the most sophisticated of scans but when I have had other doctors rooting around in there, looking for stuff, there is no real reason why they did not see the obvious.

So, Dr. Burdick, the whiz doctor at Baylor Dallas attempted to open, clean and drain the duct that is at least moderate in size. He stretched it out and put in a temporary stent to keep it open for a couple of weeks. He also cut my sphincter valve that lets the biliary juices in and out of the system, in order to make it flow a bit better. This has already been done and the danger is that repeated attempts just cause scarring.

So what is the diagnosis? Chronic pancreatitis.

What does that mean? It means that I will continue to have pain, nausea and digestive issues when the problem becomes acute or all the time.

What are the solutions to this? At the moment it is watch and wait. In the week since I returned from the hospital I have not had any cessation in the pain or symptoms. In fact, they are worse. This could mean that the pancreatitis is now acute, which requires more aggressive treatment. That usually includes IV fluids, pain meds and complete rest from eating or digesting. Right now that option is very attractive to me. However, getting a doctor to admit me to a hospital for treatment without any ‘hard’ evidence that they can see on a scan or in my blood work is very slim.

I have been to the ER once and called the local gastroenterologist ( a new one!) for advice. I was told I might have an infection brewing in there, which is bad, but have not heard back definitely on the blood work because of the Thanksgiving holiday.

I have been living moment to moment, dealing as best I can and eating as little as I can in order not to be dizzy from lack of food.

I feel like I am losing the battle here. I cannot sleep due to the discomfort and tonight have decided it simply isn’t worth the fight.

I tried binge watching Netflix and reading random weird shit on the interwebs and that has gotten me to the wee hours of the morning.

Quite honestly, I am depressed, angry, overwhelmed and scared.

Nothing clever here.. just the truth.

For those of us with chronic illnesses this is often the case. I am so fortunate to have wonderful friends online that have my immuno disorder and are on the same roller coaster I am on but with their own unique versions of it.

The root cause of all of this is the same it has always been: My immune system cannot fight and when it does, it tends to attack me and not bacteria or viruses.

This is what I know: I cannot get all fixed up.

That is not going to happen.

I can, however, keep trying to plug the leaks in the dam of my body’s upheaval, one stupid complication at a time.

How do I deal? How do I go forward?

Hell if I know.

I just put one foot in front of the other and try not to let it rule every second of my life.
I try to not let my family know just how awful it is because it is painful for them to be helpless bystanders as they watch my slow train wreck.

I have to go on to the next thing.. the next action to make it better.

I read up on pub med and I read the websites that are devoted to each disease and disorder, looking for clues.

I know some things: my family is in constant upheaval because they can never be assured that I will be there for them either physically or mentally.

This is very hard on my self esteem and my relationships, both with my husband and children.

I have a wonderful family. They love me and try SO hard to make it better. But still, there is friction and there is uncertainty and no matter how many times I am told, “it’s not your fault” I still feel like it is somehow.

What do I want? Control.

What do I get? None. Control of any of this is an illusion, just as all of our lives are basically out of our hands.

Ah, but this begs the question; are our lives, our fears, our pain..totally random or is there some higher purpose at work?

I believe the answers to those questions are very complicated.

Is there a G-d, way up there in the sky saying “Katie you need to learn something from this. I am having all of this happen to you for a reason.”

No.

Life is messy and random and there are no promises of ease or success.

However, I do believe there is a power greater than myself that gives a shit.

I understand that power through the lens of my cultural and religious background and study.

G-d is not vengeful. G-d is just not in control of every little thing either. It is a bit like Chaos theory.

In a universe of beauty and precision and unspeakable complexity, we are but specks of light that flicker for a short time. It is up to us to keep our eyes, ears and hearts open to whatever love and joy and peace we can wring from the light within us and the light within others.

For me, that light is G-d.

Remember the story of Job?

Job had a hell of a time. Basically everything in his life went to hell in a hand basket. He traveled the deepest and darkest valleys of the soul but in the end was redeemed and redeemable in the eyes of his Creator and then, ultimately, himself.

Sometimes, if we let them, we are able to see the light of G-d shining through someone else and that light can give us enough warmth to get through the bleakest and toughest moments of our lives.

But the key here, I think, is that we have to be open and risk letting our hearts be bared to a G-d we cannot see and we cannot even touch.

Is this insane? I think it may be!

In fact, I have spent a good portion of the last ten years trying to decide if insanity is the only reason for this concept of the Divine.

But somehow, the answer is always no. Even in my darkest hour I cry out and if I am listening, I know I am heard.

Does that fix anything? Does it give meaning to the suffering? No. It really doesn’t. It just means I am not alone.

I often think of the fact that Jews (me) throughout history, have suffered over and over again and yet still get up, dust off their boots and find their way back to G-d and to one another.

There are all kinds of fancy, exegetical ways to ‘prove’ or argue this point. It is in the Torah and it is in the works of the thinkers and writers of Judaism.

It has been a perennial issue.

I have decided that if someone can live through the agony of the Shoah (Holocaust) and retain their faith, then it is the least I can do.

When we struggle, G-d struggles with us.

When we rejoice, G-d rejoices with us.

It is just a matter of keeping our hearts (which in biblical Hebrew are the seat of the soul) open.

So, that is my prayer…

Don’t let me walk this path alone. Give me the strength and the sanity to push on for one more day and one more ‘fix’ so that I can offer the best of myself to those I love.

And when I can’t offer much of anything, please oh G-d, give me the gifts of acceptance and trust.

I may not be as demonstrative in my faith journey as I used to be. I have come to realize I cannot. I have too much going on internally.

But, do I know what I need to do from here; from 5:10 am on a Sunday morning when I have had no sleep?

Yes, ultimately I know.

Look around me for the lights of the Eternal shining in the most unusual of packages, and listen, and hear the promise that there is hope and there is a hand reaching for mine in the dark, if I can just quiet myself enough to look for it.

The view down here in the fox hole is changing. Horizons are opening up and expanding and some are becoming more blurred and seem quite far away.
I am now several weeks post op for the bladder procedure and two weeks post op for the pain blocking procedure on my upper right side.
I am cautiously optimistic about the bladder procedure. I think it may be working. I had to miss the follow up appointment this week due to stuff I will get into in a minute but I think there is definite progress.
The pain blocking shots I had done in my abdomen area are not working as well.
I am still feeling the pain, although it is not as sharp.
However, I think that may be due to the fact that I am on an increased dose of pain medication right now.

So, that is where I am.

Except, I am broken out in mystery rash and cannot sleep well.

Why?

Who knows?

I really, really don’t have the oomph to track it down anymore. I have had this rash, or some form of it, for over ten years. It comes and goes. This seems to be a particularly bad break out.

It is worse at night and results in raised, angry bumps on my arms. However, I also have intense itching and burning in other parts of my body where there is little evidence on the surface.

The questions from doctors are always the same: “Did you change detergents? Did you change soaps?
“Did you eat anything new?” ” Have you had a skin biopsy of the rash?”

No. No. No. and YES.

I won’t allow anymore biopsies from my right arm. It looks like crap already.

I have had several diagnoses over the years and none of them have panned out.

I have been given multiple prescriptions and pep talks too.

The only thing that seems to stop it is a big, horse-sized dose of Kenalog- (powerful steroid) shot in the hip.

This works better than anything. It is not a medication that is good for you. It weakens your bones and leaves you open to infection but, hey, I am starting to not really care!

I just want this shit put to sleep again.

November 5:
Well, I have been re-miss of late! I have not been writing here or finishing anything because I do not want to be a whiner!

But, I realize that doing this writing is therapeutic and that if it is of any help to anyone else, that is indeed a wonderful thing.

So, in the interest of humanity, I will write:)

The rash I was kvetching about in the above post is gone; At least it is gone from my arms. It has moved locations and I will not say more.
This confirms a diagnosis though: it is lichen planus. Why it comes and why it goes.. no one knows.

It stopped because I had a big whopping dose of steroid. I got it in the form of a second go at the pain injections at the pain dr’s surgery center almost two weeks ago.

Such fun! Oh well, the rash is gone but the pain is still there; partial win.

I tell ya, I just live for the IV pokes and the stress of surgery. It is definitely something I am addicted to, just like pain meds. I can’t tell you how fun they all are. I get so high and I think I am flying…

Disclaimer: That was all patented bullshit.

Irony is sometimes useful when one is accused of being all of the above.

I am still so doctor shy currently that I will hardly go to anyone. I am just bone weary of being blamed for my own illnesses. I know it is common. I understand that doctors are people and want to cure their patients and can’t handle it when the patient is not fixed. I understand all that is underlying the American medical system and its dysfunctions. I just don’t have time for it.

So, grumpy pants here!
See why I have not written!

The current state of being is that I am headed to Dallas to Baylor University Medical Center for another go at my biliary ducts on the 17th of this month. I would have loved to have gone sooner because it hurts like hell, but there is no way as the Super Doc in question will be gone.

I am trying once again to solve the upper right side pain I have.

I saw a new gastroenterologist lady a couple of weeks ago and she recommended this course of action. I respect her and her opinion so I am doing what she says.
The dr. who is doing the surgery this time is purported to be top notch and able to find things other doctors may have missed while they were moving around my ducts.

Maybe I can finally get my ducts in a row!

Sorry, sorry, I have been dying to say that.

I felt much better having talked to this gastro lady. She confirmed that I do indeed have a problem and it is not caused by my use of pain meds.

She also told me that it may not be solvable, but that I should definitely try this doctor in Dallas.

So, try I will.

Ducts in a row… !
Funny!
Right?

I am all out of things to say.
It is sunny and warm in Central Texas and I think I will go outside and play with plants.

It is time to send this long and sad missive off into cyberspace. I keep thinking of just erasing it but what the hell? I mean, no one is forced to read this.

Also, maybe there are others (I know there are) who feel the same frustrations I do.

May all of us tie another knot in our damned frayed ropes and HANG IN THERE.

I have not written here in a while. I have been too busy fighting and living. I have been down in the trenches of the immune system wars, fighting back, setting mine fields and running back to my trench, hoping the bombs go off and hit the enemy and not me.

What do I mean by this?

I have decided to change my approach and see if maybe I can gain some traction over what at times feels like a an out of control freight train.

I have been fighting the pain in my body.

This past Friday I had a procedure done on my bladder. It is designed to help stop the constant bladder spasms I have that are called ‘Interstitial Cystitis’ or IC. IC is what causes me to often have inflammation in my bladder and up into my back and kidneys. I am not necessarily infected, just in pain. The cause is autoimmune and means that the bladder lining is torn and ragged in places. In other words, my body is attacking its own tissue.

I had tried this procedure in 2011 and gotten relief so I decided to go for it again. After knocking me out, the urologist fills my bladder up like a balloon with sterile water. She then drains it and refills it with a solution of soothing medication and wakes me up. I have to hold that in for an hour and a half. Trust me, you Do Not want to pee after all that.

The procedure itself is painful but I believe is starting to provide relief. The idea behind it is that the bladder will regrow its lining and you will get to start over with a lining that is not all fractured and broken.

In two weeks, I see the doctor again and she will fill my bladder with a solution in the office. This will provide more soothing medication and we will see from there. The last time I had it done, I went through six weeks of these ‘instillations’ in her office. They are miserable but seemed to put me in remission so well worth the effort.

This coming Tuesday I am having another procedure. For this one I am having a nerve blocking shot, guided by radiography, into my right spleen area. The shot will contain some cortisone and hopefully help with my right sided pain. I am going to be knocked out for this one too. They offered to do it with me awake but I declined!

If it doesn’t work, there are more options. I figure it is worth a try.

I was scheduled to have yet another surgery on that side of my body but decided I was tired of trying to fix whatever the hell is going on over there. No one really seems to know what it is and it has not killed me yet, so I just decided that blocking the pain is good enough for now.

I have to just live my life and quit worrying about getting myself all ‘fixed.”

Fixing everything is NOT going to happen.

I will settle for just feeling pain free.

In the meantime, I am taken an increased dose of pain medicine and I itch like crazy. Is it the pain med?
I don’t know. Should I pursue a doctor’s appointment about it?
Perhaps.

But, my feelings these days run along the lines of survival is not good enough even  if it doesn’t come with a modicum of comfort.

Thus, pain control and sleep are my top priorities.

I want the rest of it to go the fuck away.

It won’t, of course.

But hey, at least I am getting some new ammunition and continue the fight.

I have had a really crap couple of weeks with pain and the rest of it. I’ve been in and out of the hospital for a quick 24 hours of hell, spoken down to by doctors, and had lots of nasty tests.
Out of all of this, I have learned some lessons that are hard but are things I had learned before. Apparently I just needed to suffer more to get them down really well:
1. NEVER TELL ANYONE YOU ARE IN PAIN, ESPECIALLY A DOCTOR.
2. NEVER ASK QUESTIONS THAT MAKE THE DOCTOR LOOK LESS IN CHARGE.
3. NEVER CAUSE YOUR FAMILY MORE GRIEF THAN NECESSARY BY BEING A PAIN IN THE ASS PATIENT AND DOING THE ABOVE TWO ITEMS.
4. GET CLOSE UP AND CUDDLY WITH ANXIETY, PANIC, HELPLESSNESS AND SHAME.
5. YOU WON’T DIE JUST BECAUSE YOU FEEL LIKE IT.
6. IT TURNS OUT YOU CAN’T ACTUALLY DROWN IN YOUR OWN TEARS.
7. LIFE DOES NOT ‘OWE’ YOU A BREAK.
8. CHRONIC ILLNESS DOES NOT GET BETTER; IT GETS WORSE.
9. DO YOUR CRYING IN PRIVATE.
10. DON’T PUBLISH THIS KIND OF NEGATIVE SHIT IN A BLOG: WHOOPS.