Scenes from the Immune System Wars

I think any and everyone with a chronic illness or even a fleeting illness is faced with this: We have things we want to go out and do and then all our best laid plans fall through.

It is by no fault of our own that these things happen but they do anyway.
For one reason or the other, our bodies betray us at critical moments.
For me, it seems to happen every damned weekend lately.
I wait all week to have time with my husband and my family and then I spend the time in bed or worse, in ER.

It wears me down and chips away at my soul.
My mind has all sorts of fun and fulfilling things for me to do but my flesh..
This flesh is WEAK.

I have been writing a lot lately about how to come to an equilibrium of loving myself even though I am a spirit housed in this faulty body.

Some days I am more at peace with that than others.

Today is not really a peaceful day. It is not the worst day, but also not peaceful.

I am sitting here and infusing my gammaglobulin, hoping it will give me a burst of energy.

Maybe, I will make it out to brunch with my husband.

I feel like the world’s worst partner most of the time.

It is hard not to.

I don’t mean to whine here. I just feel tired and tired of being sick and I cannot stop wishing for better times.
These last three months or so have been rough.

This is normal for what I have: lots of ups and downs and new symptoms no one understands or can quantify.
I get tired of enumerating them for doctors who shake their heads and look at me like I really do have two heads.

So today I say Mi Shebieberach (prayer for health and healing) for myself and for all of us out there that need it.

Let’s get our hearts and minds in the game. Maybe we can drag our unwilling bodies along for the ride.

I write today not from the top of mountain but not from the bottom of a valley either.
I think I am on the soft cleft of a hill. The kind that rolls between a landscape where things look pastoral and bucolic from the outside but if one is to examine them closely, they are teeming with all sorts of creepy crawlies.
Nothing is ever just a simple, sweet, rolling, green.

But, all of that being said, I think I will lie back for the day and try to enjoy it from this  less than magnificent perch.

I am learning, albeit slowly, to find a place amongst the creepy crawlies.

After all, I am one of them!

Yesterday, as I had my throat swabbed for strep for the upteenth time this year, I had a sudden visual image of myself sitting there on the exam table with bug antennae sticking up through my hair.

My hair is generally pretty crazy these days anyway. I wonder if anyone would notice my antennae?

I let my mind wander further and could almost physically feel the hard shell of a beetle forming on my back. How useful it would be!
I could fend off my enemies and avoid being crushed by every little thing if I had a hard shell. If I could, I would choose a lilac colored shell with soft colored, orange spots.
My antennae would be pink with sparkles, of course.

Anyone (especially doctors) would know from looking at me that I am exotic.
I wouldn’t have to explain to them that I am different than the rest: that the tests don’t work or that my everything always hurts.

It would be so much easier.

When I am happy, I would give off a scent of lavender and produce bubbles from my antennae.
When in pain or unhappy, I would give off the scent of…. hmmmm…..
I don’t think I should finish that thought.
Anyway.

So today I am looking up at the world from my vantage point; the cleft in the hill.
I realize I am no more than a tiny, albeit exotic bug, but, I can still enjoy whatever is on offer today.
Will a giant called Life smash me with its equally giant and uncaring hiking boot as it strides across my spot?

I hope not.

I hate having to scrape myself back together.

I am running out of glue for my shell and you can really see the fracture lines where I have been put back together if you look closely.

But, Life and its giant hiking boot be damned.

I am going to lie here in all my glory: Fractured and patched, lilac and orange and with my sparkly pink antennae pointed towards the sounds of laughter.

Note from the author:
NO PSYCHOTROPIC MEDICATIONS WERE CONSUMED BEFORE WRITING THIS BLOG!

I chose my title carefully for this post. You see I have found my way back to some places I thought I would never go again.
I have found my way home to my relationship with my Higher Power as I understand Him/Her and I have returned to the 12 step group I call home.
All of this is new and different than before but so deeply satisfying. I have to do the footwork!
I have to reach out!
But, I am finding that when I do, even on a dark, dark day, there is a well spring that comes from some other place inside or outside of me. It gurgles and burgles with hope and light even when there is none.

Has this changed my diagnoses? No.
Has it changed the complexities of my life with several chronic illnesses, a family and a big house and lots of people and pets to care for? No.

But it is changing me.

And I just have to say, “Thank you, Lord! I had not planned on ever really coming back but you dragged me here anyway.” In addition to my 12 step group I am finding G-d in my heart, and love in bones in a new faith journey.

Each day unfolds in its own messy way. Hour by hour we chose how we will experience our lives; all of us.

For a Christian, the great leap of faith is to believe that Jesus Christ died on the cross for your personal salvation. That is a wonderful and amazing thing.

For me, the great leap of faith is that G-d is working in my life in new and different ways. I have been trying to listen, sometime with the sound turned down, for a long,long time.
I am being pulled farther and farther into the music, liturgy, language and wide ranging literature that makes up modern Judaism. It is like a smorgasbord. The faith and culture of my heart and of most of my family has brought me here.

I am finally home.

Am I all the way in and exactly where I want to be? No, of course not.
I like to jump into the deep end and see if I can swim and I can’t do that right now. I have to wait until I have the time and energy to concentrate on all I want to learn and experience.
My paramount responsibility right now is to my family. I am needed.
In the meantime, I read, I pray and I grow as much as I can.

I try to remember that my body and soul need constant care if I am to be up for the tasks ahead of me; today, tomorrow, the next day.

So, can I post another uplifting post on this blog next time? I don’t know!
I don’t make those sort of promises anymore. I just try to live the best life I can.
All I have to say today is here…
Shalom, Katie

It seems I have some answers. I should be happy about this. But, right now I am just frightened and I don’t feel too well. I am over the initial panic, but I have yet to begin any sort of therapy.

Thank you, G-D for my new internist. She is a gift. She put this all together and ordered more tests and made a differential diagnosis (what good doctors do).

I have autoimmune hepatitis. I think I have had it a long time and that makes me sad and angry. Autoimmune hepatitis means that my body is attacking my liver as though it were a foreign body and trying to kill it. This can lead to all kinds of nasty things, including liver failure.

Hopefully, with prednisone and some other immuno-modulating drugs, it can be put to sleep. From what I have read, I will probably be off and on the meds. They have side-effects, of course, but I can’t think about those.

Why didn’t any of the other doctors look for this?
Why did I have to get this sick?
Why didn’t my rheumatologist listen when I told her about my symptoms?
Why didn’t they test this when I spent seven nights in the hospital a month ago?

If all of this is so haphazard, we truly have no control. In other words, medicine is not very advanced. I have been reading and pushing and going to doctors and trying to find answers for this for at least three years. I have been told everything from “You feel too much pain” to “You need a psychiatrist to work on your childhood issues.”

This is all bullshit.

In the meantime I have struggled to live my life and deal with a body that was rebelling. I have known that something was very wrong and no one believed me.

This makes me so angry that I just feel like I can’t deal with all of it for another minute. I want to get fixed now. I am tired of waiting.

I feel bad. My body is swollen and I am nauseated and in pain. I am so tired that I feel like I could just sleep for the rest of my life.

If I do that, I might as well be dead.
Sometimes I feel like life is rushing past me and I am not a part of it. I don’t like that feeling.
I want to take part in my life and not always be sick.

I know, I know, I need to keep my head up. I have to be strong. I can’t show the family how low or crappy I am.
So, what do I do?
I guess I go on… one swollen foot at a time, right?
I have to keep ignoring the other stuff, just like I have so far.

When do I ask the doctor if we have a treatment plan?
I don’t know.
I really don’t.
I guess it shall all be revealed and I need to remember I have no control over all of this.
I do believe there is a power greater than myself and I call that power G-d. I believe that I am a part of a greater creation and that I am loved. I do NOT believe that suffering is something we are meant to have as a ‘lesson.’ That does not make sense to me.
We are imperfect and incomplete and small. G-d is the author of all and is our partner in this life.
We have the choice to trust that at the end of it all, our Partner is looking out for us in some way we don’t even comprehend.

The more theology and what not I have studied the more certain I have become that I know very little.

So, that is where I am today: little, scared and not knowing much of anything.
I guess I will choose to do the only thing I can and live through the next minute with my head up.

For the last several months I have been having episodes of Rip van Winkelism. I have been attributing it to just the wear and tear of living with the mess that is my body and going through the daily routine that is my crazy life.
I am beginning to think there is more to it than that.
Like, maybe it is all connected somehow..
Like circular… you know?
Dude….
Here is the cycle…
Katie goes about her daily life of: cooking, cleaning, managing, corralling, calling doctors, writing, trying to exercise, eat well, teach Samuel, be a good listener and if needed, adviser to various family members, being an attentive spouse and listening to her body’s ever-present whining.

Oh, yes, and driving everywhere, everywhere….

And this is not too bad.. really.

But then there are the nights. The nights really aren’t too good. At night there is the pain in the upper right quadrant of my gut. It is louder at night so I have to listen to it. And then, there is the itching. I itch all over. That is a liver thing as I understand it. It correlates to having stupidly high liver enzymes, which occur off and on and no one understands. Instead they just experiment on me and I am getting really, really tired of it.

Oh, and I am nauseous off and on.

So, after about a week of this, I pass out. I don’t just pass out: I can’t move. I am comatose for upwards of 20 hours at a time. I don’t drink, eat or pee.

It is like not existing.

When I finally awaken I feel like I have to make up for lost time. I also feel like I don’t even want to wake up.
I would rather just continue in my state of non-being.

The thought of getting up and facing whatever it is that is making me sick overwhelms me.

But, there are other thoughts; good ones.

I get up for those.

I want to kiss my family and pet my pets.

I want to see the sunshine and feel it warm my face.. all of that corny shit.

So, I do it again..

I set myself to rewind.

But I am beginning to wonder where it all leads. I am hoping against hope that a solution can be found so that I don’t have to lose a day. It would be much more efficient to just sleep at night, when everyone else is doing it!

So, I talked to the new Wunderartzt (Wonder Doctor), my internist, yesterday. She is really amazing. she is going to run interference with the liver specialist and speak to the immunologist and talk to the rheumatologist about the fatigue issue. She thinks all of my symptoms are related to being over medicated. I don’t think that is the answer to Everything but at least she is willing to tackle all the issues and work with me.

In the meantime I am going off of as many meds as I can.

I have no problem getting off of them. I hate taking handfuls of medications.

She sent me to the lab for a big blood draw for all kinds of tests yesterday.

The poor phlebotomist couldn’t get me to bleed but was persistent and finally managed so I left.

We shall see.

Wow. That last post I made was prescient. The very next day I was flat on my back in the hospital. Talk about powerless!

The title of this blog and the sentence above this one were as far as I got for several weeks. Life intervened.

I have so much on my heart that I have writer’s block.

I did have a shaky and frightening ride through the medical system at the first of June. I spent a week in the hospital with elevated liver enzymes, in pain, and nauseated, while the doctors diddled around not knowing what to do. I finally had a biopsy and some imaging tests done but it was much ado about nothing.

I was released on a Saturday with an infection in my bladder that was two weeks on with no improvement. The doctor who released me told me the infection was resistant to what they had been giving me in the hospital and to get to my urologist soon.

By that Monday I was really sick and the infection had spread. I saw my urologist and she suggested I try a fairly rough antibiotic while she re-cultured the infection and we gave me 24 hours to either improve or go back into another hospital.

This was frustrating and depressing. I ended up in ER and due to all the messing around and past history of IV drugs once a month, I have no veins left: NONE.

The nurse in ER could not get an IV into me even with an ultrasound machine and after forty minutes of looking.
She managed to get a tiny vein to hold for about an hour and that was the only I got any medication at all. I could not get a bag of badly needed fluids or a second round of medicine in the vein before it collapsed.

This whole thing with my veins is becoming a huge elephant in the living room.

None of my doctors wants to sign off on letting me have a port a cath placed (which is an IV line that is accessible through your chest and just stays open).

The reasoning is two fold: 1. I am not receiving any sort of infusions at this point that require venous access on a regular basis. I take my immune system meds subcutaneously through my tummy each week. 2. A port a cath can become infected and that is very dangerous.

I understand both points. However, when I do need someone to access my veins, it is a nightmare. All of the nurses that work with me ask, “why don’t you have a port?”
I get stuck over and over and over and everyone gets frustrated. It becomes very painful and stressful for me.
It hurts like hell to get ten pokes for one little IV that then blows up.

The question is: which doctor is going to order the thing?

I don’t know.

I need to have out patient surgery on my eyelid and I am scared to even go because of the IV problem.

It’s ridiculous.

But, in further news, both my gastro doc and my rheumy have fired me. So, I guess moving on is a good idea.
It is depressing but I know this happens with people who are complex and ill.

On a more positive note, I have prioritized taking care of myself as a much higher item than I was. I have decided it is a non-negotiable item.
To that end I am joining couple of groups that I think will help me out.
I am also going to stress out less about my kids. They will manage.
So, June has been tough but I managed to come out ok.
And what about today? Today is the 22 of June, 2015.
It is the 50th anniversary of my birth.
That is crazy!

I think I’ll just put all the bad stuff on the shelf and LET THE GOOD TIMES ROLL!!!!

Today has reminded me of some things:
1. I am incredibly stubborn.
2. I am a perfectionist.
3. I expect the people around me to live up to my crazy high standards.
4. Items 1-3 can be assets or negatives depending on how they are handled

Since I have been a sick-o I have had to learn to be more forgiving of myself and others. It has never been an easy thing.
In fact, I have to learn it over and over again.

The last week, as we have come off of vacation and back to real life and all its myriad of weird shit stuff to solve: dead car, car that was hit in front of house by drunk driver, and… oh! my son has West Nile virus but will be fine, NO WORRIES!!! I have hit the ground running.

I have doggedly refused to admit defeat in the face of my own weakness. Somehow, I always think that if I sleep enough every night, I will somehow prevail and it won’t catch up to me.
Well, that’s dumb.
My previous entry details that I am all infected at the moment.
But hey, the dr. gave me prednisone. Prednisone gives me crazy energy. I run and run and then collapse in a heap.
So today we went out to solve the car issue. We sold one and bought one.
It took ALL DAY.
Tonight, I wanted to go to a family party.
However, it was/is patently obvious to the people I live with that I am out of vroom, vroom.
My daughter and husband looked at me and said, “no.”
I was irritated.
I was aghast.
How presumptive of them.
Well, fuck that noise!
Oh yeah, they’re right.
I am a mess.

I think;albeit very, very slowly, that I am learning that having limits does not mean that I am less than or that I am completely broken.
It means that I am partially broken (which I hate) and that if I want to do stuff, I have to pay attention to the screaming voices inside of me that say, “slow down!”

When I don’t, I get irritated, not just with myself, but with everyone, for not doing my bidding.

I become tired, in pain, short tempered and really, really hard to live with.

I am not saying I am the only one at my home that gets that way: I’m not.
But, being that I seem to have the job of maintaining that calm center at the heart of my home, I cannot do it when I am too sick to operate.

It isn’t fair to me or to anyone else.

All of this brings me to the reason and I cannot go to the party tonight even though I am aching to go.
Pushing has horrible consequences; for me, and for everyone in my family.

I get that.

I finally get that.

That doesn’t mean it won’t happen but it is a very deep thing to finally understand and move towards acceptance.

I have to understand that there is a point beyond all reason where I cannot go. If I go there, the consequences are usually dire. I don’t get to make that call anymore. Chronic illness took that from me.
And, it isn’t giving it back… no matter how much I want it to.
That’s a bitch. It really is.

Ah, Summer! It is here. With all of its glory and heat and extra special humidity this year.

I cannot say that I feel any less stressed or “off of work” like I used to. I am still home schooling my teenager. He didn’t finish everything but we are going at a more leisurely pace.
My college aged daughter is back home, which is lovely and at the same time stressful. She is at that pivotal point in her life when she is almost ready to fly completely solo, but not quite.

Vacation, lovely beachy vacation, is already come and gone.

And what did it leave in its innocent wake?

Snot.

That’s right.

It left: Snot.

Let me paint the scene for you.

Picture a perfect day on a perfect boat in a perfect ride chasing after perfectly charming wild dolphins:
The idea is that you (and other boats doing the same thing) run around after the dolphin pods that seem oblivious or think it amusing, and when the captain tells you, “jump, jump!” you drop out of the boat into the crystal clear and cool water and the dolphins simply swim around and through you.

It’s sort of crazy but very charming. They give you snorkel equipment if you like and you just go for it.

Then there’s me. I tried to go for it. I am a good swimmer and basically fearless when it comes to anything water related. At the first stop, I jumped. I also tanked a bunch of sea water up my nose and into my ears. Normally this would not have bothered me. But, in the era of chronic disease Katie, I knew it was bad. I also knew my energy was already pretty tapped out.

I had infused the day before and yet still hiked up and down the beach. I was pushing and afraid to push too far lest my body pushed back with a giant “SCREW YOU!”

So, I had a couple of choices. I could: A. Feel sorry for myself and whine. B. Put on my big girl pants and gracefully hand other folks their equipment each time we stopped. C. Figure out how to land somewhere in between the two.

I tried to go for “C” with a healthy dose of “B”.

I got back out of the boat when the captain parked us near a beach and we could get out and explore the area. I still made a sloppy mess of getting in and out but I didn’t submerge.

After we were back from the two hour trip we went to eat sea food at a beach front restaurant. It was a great topper for a great day.

Somewhere along the way my son got off on the topic that I sure am a lucky woman to have a husband that doesn’t dump me since I am such a sicko and so, well, useless.

He is fifteen and talks a lot. I don’t think he meant it to come out quite like it did.

But, in any case, it struck a chord in me and stoked up all of my darkest insecurities.

Now, after a week back at home, I am back to my usual whirlwind of teaching, cooking, cleaning, organizing, fixing,
and whatever else it is that I do. And, I am full of snot. Full to the brim with a sinusy, infectiony,
ouchy thing.

I knew it would hit me after the wild dolphin incident. It isn’t too bad and I can keep going.

I will live to see another day!

But, I do feel useless when I can only go until 6 p.m. without collapsing.

I do feel like a burden when I get tired of listening to everyone’s troubles.

I don’t want to wear out and snort about like a little piggy with a stuffed up nose and achy ears and the rest of it.

But, I enjoyed the trip that I planned and made happen. It was good.

Getting out of town is always worth it.

Jumping in and out of boats is also always worth it.

The smoked tuna dip with a touch of jalapeno was also worth it.

It just all comes out in some sort of strange cosmic equation that I cannot explain to someone that doesn’t have a chronic illness.

Smoky tuna dip + Boat + Wild dolphins + Seeing my family really happy + Sinus infection = Net gain.

I was never good at math but I can tell that solving for X is not happening here.

If snot were “X” and wild dolphins were “Y”….

Oh, never mind!

Sickland is a featureless place.
It smells of alcohol and bed sheets and is lonely.

Sickland is a place I have to go all alone. When I try to come out for a visit, things don’t generally go too well. Despite my best attempts, I am often misunderstood, irritating or simply irrelevant.
I don’t know why this is.

I think it is just a fact of life for those of us who go to Sickland often.
Our families and friends have to protect themselves from the ups and downs of living without us. Or maybe it is just too much trouble, I don’t know.

All I know is that it is best I remain quiet and cocooned. If I want to be held or hugged, I have to ask for it, repeatedly. Comforting does not come easily in my family. Nor is it easy for me to ask.

I feel like an irritating, small pet that sits on your couch and poops on your carpet but never really does much of anything.

I struggle to ask for what I need and then feel shunned when I am cut out of the daily life of the family.

Life happens around me. I am not a part of it.

It is difficult.

I hate it.

I hate Sickland.

I would rather fake being well than live imprisoned here in Sickland. I suppose that is why I often push way too hard and end up here. The thought of being confined and alone is so utterly repellent to me that I do almost anything to avoid it.

But sometimes there is no choice.

I don’t get a say in the matter.

That’s why they call it chronic illness. It never leaves.

The unwelcome guest(s) in my body sleep at times but never vacate the premises.

These unwanted tenants are always there, waiting to whisk me away to places I know but loathe: hospitals, doctor’s offices, beds and twilight sleep; days and nights confined to my house.

Sickland.

I hate you.

How are all of you out there in blog land? Blog-o-sphere?

It is the end of another school year and those of us involved with students and the cycle of semesters are running towards the finish line, or limping, if you are like me.

I stopped teaching as an adjunct (where I was for almost 15 years) about three years ago due to my crappy health and have really missed it. But, with having a kid in college and another still in school it seems like I have been pretty plugged in.

Well, this past October changed everything in that regard. I started home schooling my ninth grader. It has been an incredible learning experience. I now know way more about high school curriculum than I have in many years. I have learned lots of science, because that is his main interest and we participate in an incredible home school science group, where he competes both in Science Olympiad and Science Bowl. This means he is practicing and competing through out the school year.

It has also been exhausting.

The last couple of weeks I have been back at my old tricks, grading college composition papers, for a professor who had her baby a bit earlier than planned. My old department called and asked if I could pick up some of the work. I was happy to do it. It felt good to be back in the swing of it, mentally. And, I am always happy for any little paycheck since disability is not much money, at all.

With all of that happening, my aunt needing me every time I turn around and my daughter calling, it seems like enough.

But, no. Life doesn’t work that way, does it?

It turns out my gastric pain is back in full force. I can’t eat without being in significant pain. I haven’t had my liver enzymes checked since they went wild a few weeks ago because I frankly just gave up.
But, Friday I saw a Hepatologist from the medical school in Dallas. He comes to the Austin area once a month and I was able to see him. He had some new ideas! He does not think I have cancer or hepatitis or anything like that. He thinks I have a biliary stone, which has been looked for already, that is flipped inside one of my oddly shaped ducts and invisible to the MRI and even to the limited surgeries I have had with scopes. In other words, he thinks I probably need major, exploratory surgery to get it out.

This is good and bad.

He believes it explains the off and on again nature of my problem and why it has not been solved. So, he is researching all of my files and talking with my gastroenterologist to see what he can piece together. In the meantime, he told me the horrid pain and high liver enzymes will happen again. I am a sitting duck.

It isn’t a good feeling.

I want to go on vacation in a few weeks and I don’t want to be ruled by this. It’s pissing me off!

It’s crazy. But, I am trying to be optimistic that there is path ahead that may lead to a resolution. I guess I have to follow it and hope for the best.

In the meantime, I will keep pushing my teenage student to the end of his yearly studies, and grading those papers. Oh, and driving my aunt all over the place!

Carpe Diem: and Liver Duct e’ Puke’em.