Scenes from the Immune System Wars

I have almost made it.  Tomorrow I fly to Florida.  I see the doctors with the GI team on Wednesday afternoon.  Lord, please get me through this last little bit.  I am falling apart.

I itch and I hurt and the nausea is back in full force.  I guess this all means that the prednisone was helping.  What am I going to do if they put me back on it?  I am full of thrush and I can’t sleep.

If I take very much I have panic attacks.  Great.  It is one evil or the other.

I sort of hope they hospitalize me.  I realize that is highly unlikely.  Medicine does not work that way in the U. S.  You have to be mostly dead first.  But, since my cousin will be with me I would rather be admitted and given pain meds and tested all at once.  We’ll see.

I just need to get through tonight and the flight out there tomorrow right now.  One hour at a time is all I can do……

The One Year Itch

 

Right now I am sitting on edge.  I have had a sleepless night of symptoms that I tried to treat at home.  I have a diagnosis for what is going on, so that is new: I have autoimmune pancreatitis. And, I have taken one pill in the 30 day regimen of steroids I will be on to hopefully control this.  At the end of this pill bottle of 20mg. of daily steroid, I am to undergo a second biopsy, in San Antonio, to see if the treatment is successful.

But right here, right now, I am miserable.  I have been itching, everywhere, internally, all night long.  I have pain and I am nauseated.  I am able to keep liquids down and I have tried taking benedryl and putting steroid crème on the areas of my arms that look like a raised rash.  But, ultimately, there is no relief.

I did not run to the ER with this for several reasons: 1. I need to go to the hospital connected with my rheumatologist.  2. The ER at that particular hospital sucks.  3.  It will do me no good to be drugged and sent home.  However, as the hours tick by, I am less and less able hold myself together: I’m tired.

I have been in and out of ER’s for a year with this upper right quadrant pain and the itching and nausea.  And I have been told over and over that there is “no real reason for it. “ In fact, I had one gastroenterologist, a guy I like; tell me after his third endoscopy, that I “feel pain too much.”

That is not a diagnosis.  I then went to another GI doctor who referred me to this hot shot specialist in San Antonio.  I had a week of hell in the hospital there and was utterly flattened by the lack of communication between the hospital and the doctor’s staff and the other way around.  Since I returned to Austin, my rheumatologist has been trying to get the hot shot on the phone.  This has gone on three weeks since the initial biopsy.

Yesterday, she got lucky; so-to- speak.  I have a diagnosis and a treatment plan.  I am grateful for those things.  But, in the meantime I have gotten worse and worse and I am not feeling too well.  I cannot hang on like this.  I don’t know when the steroid will kick in but right now I am losing my mind.

Do I have a right to be annoyed that it took a year to get a diagnosis?

Do I have right to be annoyed that it took three weeks after my harrowing San Antonio hospital stay to get a diagnosis?

Probably: I do have rights.  I even have feelings.  Oh, and I have question: LOTS OF THEM.

Like, how did my igg infusion come into play here?  My symptoms worsened after I infused yesterday?  Is that a coincidence?

I don’t WANT to spend more time in a hospital.   I double dosed my pain pills, the last two nights.

That was illegal and I know it.  I was just trying like hell to stay out of the hospital. So, WHAT NEXT????

I am at my wits end.

If I weren’t so tired, I would cry.

 

P. S.   I wrote this several weeks ago.  It is now Mar. 11.  The treatment didn’t work and the doctor in San Antonio proved incompetent once again.  Tomorrow I fly to Florida to see the doctors at Mayo.  I hope they have some answers.

When you are immune compromised like me, weird ass things happen on a fairly regular basis.  This past week I have had a horribly sore throat and painful sores on my lips and tongue.  I thought I had strep.  I went to my gp three times.  He kept telling me I was “fine.”  I wasn’t fine.  I couldn’t swallow or eat.  At one point, I swallowed a cold drink and my entire esophagus freaked out and went into a spasm.

I did some reading about it and looked at various websites.  As usual, when you are a veteran soldier of the immune system wars, you learn to ask questions and look in strange places for answers.  You learn to think outside all of the boxes.  After all, this disease process that is me, does not fit in any sort of box, it is more of an amorphous blob of ever-changing goo.

 

I found out that Sjogren’s syndrome (which causes your mucus membranes to dry out) can cause mouth sores. I know I have a secondary case of this but thought it would be odd that I would be in a flare.  I have been on prednisone for weeks and that generally keeps all autoimmune flare stuff at bay.

Then I started looking at pictures.  GROSS.  I don’t gross out easily but I really don’t like seeing something online that is so over the top it looks inhuman.  But, I was onto something.  Thrush.  I had been down this road before from long courses of antibiotics.  It turns out that long courses of steroids do the same thing.

Thrush is the stuff babies get in their mouths and diaper areas.  It is a fungal infection.  It causes a white coating on the tongue and white blisters on the lips and all down the throat.  In my case, the blisters are all the way down my esophagus.  Cool, huh?

So, on my third trip to the doctor, I got the right meds.  In a few days I may be free of the fungus from the dark lagoon.  In the meantime, my mouth looks like one of the disgusting pictures on the internet.

I offered to lick my family with my nasty tongue and they all ran away.  I have no idea why.

This is ridiculous!

I am hooked up to my quadruped monster at the moment. That is, I am infusing my subq igg.  I will post about it in a more complete way at a later time.  I even plan to post a link to a video of myself doing the infusion for YouTube.  I hope it might help anyone learning to do their own infusions.  Today I started the infusion relatively late in the day and I tried to hurry. Both of those things were a bad idea.  I screwed up all over the place.  I dripped medicine everywhere and did not have a second syringe prepared when I needed it.  Dumb.

But now that I am hooked up there is nothing I can do but sit here.

Today is not behaving like I want it to.  No, I guess that is untrue.  My body is not behaving.  The day is fine.  It is rather beautiful outside.  I went out with my friend to see her new house under construction. We had lunch out and talked.  I enjoy spending time with her and her house looks like it will be awesome.

But I have been miserable all day.

If you had told me three years ago that I could function semi normally this sick, I would never believe you.  But, now I know there is no damned choice.  No one can really help me.  I have sores all in my mouth and throat and down my windpipe.  I cannot swallow without horrid pain.  My side aches horribly.  I feel run down and shaky. I have fever.  But, I have to push on.

I will be at the Mayo next week and I have to hope that they can help me.  I am out of other options.

I don’t want to go back to any ER’s for help.  It is too difficult.  My family is too shell shocked from my latest round of illnesses.  I need to ‘fake normal’ as best I can until I fly out of here.

But right now, this moment, I want to give up. I want oblivion.

And I don’t think there is any shame in admitting it.

I just can’t have it.

It doesn’t exist.

 

Lumbar Puncture

Spinal Tap

September, 2012

Spinal Tap was/is the name of a rock band.  That’s pretty much all I knew about it other than the standard pregnancy stuff.  When you have babies you learn all about spinal tap in the form of epidurals.  You learn to ask for one.

When my daughter was born, I did not get one and that was a MISTAKE.  I was in active labor for 13 hours and did not have any pain relief at all for 11 hours.  It was bad.  When I had my son, five years later, I made it clear that I wanted the epidural from my first visit to the ob/gyn.  Hell, I would have been happy to have one that lasted nine months.  I remember being a little scared when the anesthesiologist came in for the procedure. But, at that point, I didn’t really care.  I just wanted the pain to get better.

No.  What happened to me last week was nothing like an epidural.  It was a lumbar puncture to check for meningitis. The IV medication I take has a slight danger of causing meningitis and I didn’t think I had it but I wanted to err on the side of caution so I went to E fucking R on Friday night.  I had a headache, neck ache, upset stomach and fever.  It kept getting worse and the headache had really been with me all week since my last infusion.  I was also itching all over.

They ran the standard blood; urine and CT scans and things looked pretty good. The doctor came in and said that because I am immune compromised, the best way to check me for sure was to do a lumbar puncture.  It sounded scary and the thought of random infection really made me pause. But, again, I wanted to err on the side of caution.  So, once again, I said yes.  I did not even know how it was done.

The doctor came in and the nurse rolled me onto my side.  They swabbed my back with betadine solution and had me roll into a ball.  Then the doctor ‘numbed’ me in one spot. It hurt but I thought that after that I would not feel the needles. There was a feeling of pressure. The poking and pressure continued.  It went on and on. The nurse excused himself.  He looked pale. I finally asked the doctor when he was going to stop and he answered me, “I cannot draw any fluid from your spine. This is very unusual.”

“Great.” I said. “This is just another freaky thing on my freaky thing list.”

“That must frustrate you.” The doctor had obviously taken psych 101.

So after all was said and done he offered me an alternative.  He would admit me and then they could do a second lumbar puncture with fluoroscopy and it would be performed by a radiologist.  Due to being already weird, this might not be a bad idea, he said.  On the other hand, he did not think I had meningitis, so I could probably go home.

I decided to go home.

I didn’t want to ruin my kid’s birthday party. My husband was really stressed out.  I could tell he was melting.  I had to just deal with it. Really, that is just the way it is most of the time.  I have learned to ‘just deal with it.’

If I get sick enough, I will stop.  Otherwise, I had best just keep going.  It upsets those around me if I stop and look sick. I just don’t get that option.

So, today, I have a lot of back and leg pain.  Did the doctor hurt me?  I don’t know.  Did he infect me?  Who knows?  I just need to rumble on until I can rumble no more.  That’s all I know.

The end.

I am my own Olympic event.

 

Yesterday was not good.  In fact, it sucked.  My joints burned like fire and I couldn’t really move without the fire spreading.  I was trying to be still with the pain and not let it take me out so I decided I would play Olympics with myself:

Announcer:

“This is Katie Kelfer on the swollen and achy joints high beam.  She is positioning herself   for take-off from the couch.  You can see the precision in her execution as her ass leaves the cushion.  And, watch… YES!  There it is.  She is up. There was a balance check when she hit the floor. That will cost half a point

What will her next move be?  Is it? No… it can’t be…

Yes!  She is going to bathe.  Wow.  No.  I can’t believe it. She’s shaving.  What grace. What finesse…

How does she do it?

Ok now, she is clothed and headed back for the couch.  She is through the prelims and we are wondering if she will get to round two.  Certainly with a performance like that there is definitely hope.  Wait, wait, here she comes now.  Let me interview her,

What did it feel like to move all the way from the couch downstairs to the upstairs bath?

“Well, Larry, I tell ya, it felt like crap.  I thought I could power through and maybe the pain would get better but you know what?  I was wrong.  I am utterly fucked today.  I don’t want to take the hardcore pain meds so I am going to keep moving and see if that helps.”

“You heard her.  Keep moving.  Will it work?  We will see when we are back for round two in the semifinals.”

“Hi, I am Larry Loser here at Taylor Zoo Stadium announcing the women’s connective tissue disease races.  Earlier we watched first time Olympian Katie Kelfer qualify for the semi-finals by moving from the couch and upstairs-through a bath and dressing experience and back to the couch.  There were a few balance issues but her score remains the highest in the category.

In the semi-final round, we had our cameras posted on the snail races to drum up audience approval.  Now, we are back for the connective tissue disease finals.

It’s bed time, folks.  Who can get to sleep first, with the least amount of narcotics?

Katie Kelfer is down by half a point already for whining to her spouse.

Her spouse is asleep and Katie is trying to accomplish the same and achieve the gold.  But it isn’t her night. The pain has turned into hot lava and is pouring, like fire, through her body.  She relents and goes for a small dose of the diluadid.

She reads and tries to focus elsewhere.

But no, it is midnight and relief is too far away.

At last, Kelfer is disqualified from the event.  She takes the second dilaudid  dose at midnight.  Sleep, however, still proves elusive.

She will not be medaling in the event tonight.”

Triggers:

I am not going to discuss Roy Rogers’ horse here.

Triggers are things that can set off a day or a week or more of shit health.  That seems obvious enough. A trigger sets off a flare.  Knowing what your triggers are can save you from having a flare.  Well, that seems pretty simple.  It isn’t.

How in the fuck are you supposed to know that staying out past 8:00 on a Saturday night having fun with your family is too much?  You just don’t know.

Some things are obvious.  Sleep is a must.  Hydration is a biggee.  Food is also important.

But lately I have been wondering about the triggers that start us down the path of disease itself.  I mean, what if certain stressors had not appeared in my life?  Would I have the chronic illnesses I have today?  I can identify pretty clearly the times in my life when my health has taken a bit nosedive.  Each of those times had been linked to a period of incredible emotional stress.

For me, the mind/body connection is very clear.  But, that doesn’t mean I have any sort of handle on it at all.  I don’t.  In fact, I have absolutely no control over it.

That is so infuriating that I think it almost makes it worse.

When I was 29, we moved across the country, my father died, I got pregnant and I became an ordained pastor of a difficult parish.  My husband had a job with a huge commute.  Our lives were very stressful and we lived in a parsonage that was from the 1880s and filled with mold.

I had the baby and then got very sick.  I had infection after infection.  I sometimes wonder if that was the trigger for my   CVID.  It is almost like it lay dormant before that.  I mean, I had a lot of illness but after that period, it went nuts.

A similar scenario happened when I was diagnosed with mixed connective tissue disease.  I was in my early forties and on IVIG.  I was teaching college part time and commuting a long way.  I had two kids in school and my mother was dying of cancer 90 miles away.  I was driving to see her as often as possible and we were caring for my mother in law, who was also ill, closer to home.  My husband’s work schedule was inflexible and we were simply overstretched.

I fell apart as soon as mom died.

My body could not sustain the pace.

Is my body weaker than it ‘should’ be?  Does it do any good to be angry about it?

Now that I am no longer working and both my mother and mother in law have passed away is life easier?  I don’t know.  It is lonelier.

I am learning to live a day at a time.  I am writing.  That is the one thing I know how to do.

I am going to find my way and fight this good fight one battle at a time.  I hope to learn as I go and maybe show the way to others as they fight.  There are but two choices here: fight or give up.  Giving up is not an option.

There is too much at stake.  I tried being stoned and it has its attractions but I have too many people and creatures depending on me.  I have to keep moving.

Come along with me for the ride.  Maybe we can learn to laugh as we fall on our asses together and slowly get back up and move on.

Furry People

Furry people help me live in a better place than the one I inhabit alone.

Furry people are dogs and cats and (now my son has a bird) and I consider them my children.  I know that is cracked.  I don’t care.  I try not to tell people outside my family unit how I feel about my animals. After all, I don’t want to be locked up. The animals give unconditional love.  They are here when no one else is home.  They are warm and soft and when I am at my lowest, they know.  Usually, Penny, my smallest dog, gets in bed with me and stays the whole day, practicing ‘heel.’

The animals are our family hobby.  We gather around them to watch them play and to play with them.  As a family, we talk about them and enjoy taking the three dogs out to parks or swimming holes. There is something completely engaging about watching a dog frolic in the water: or watching the kitten chase his tail.

Often, when I cry, I hug one of them.  They don’t understand, but they know I am in pain.  I have noticed that it causes the dogs to pant.  My pain makes them sweat.  I wonder why that is.  I think the secret of the furries is just that: they care and their capacity to care is endless.  They never judge.  They don’t ask if the pain is real or if I am going to ever get better.  They don’t care if I am contagious.  It doesn’t matter if I haven’t brushed my teeth.  The animals know what I need, instinctively.  If only they could accompany me on those difficult trips to ER or the hospital stays that suck so badly.  I have often wished I could sneak Penny dog into my infusion treatment.

I know I sound like a real baby talking about all of this but I think there is a deeper level here. Human beings are too complicated.  We worry about ourselves: “Am I going to get sick too if I hang out with Katie?”  “Is Katie going to die?” “I can’t help her and I am too uncomfortable to stay here.” Etc. etc.   The animals don’t have all these thoughts and dilemmas.  They just know they are needed.  They only have one job description: to love and cuddle unconditionally.

They do that well and sometimes, that is all  the sick person needs.

Thanks be to God for the Furry Children.

Well, I have a date with a GI doc in Jacksonville.  I was able to move up the date significantly by calling the nice appointments lady back just once.  It seems things are taking shape for this trip.

In addition, my sweet, sweet cousin, is taking me.  I can’t believe it.  I have made both of the previous trips alone.  It totally sucked but I had to do it.  My cousin is more like a sister to me and as we have aged we have both realized, I think, that we don’t have a lifetime left to ‘see each other later.’

Anyway, she is going.  I cannot even begin to explain the peace of mind this gives me. I think we are going to drive from my cousin’s house near Beaumont, TX and I will ride along.  I already have my room reserved at Mayo Inn.  It was so SAD.  Georgia, at the front desk at Mayo Inn, recognized me:( ACK.

My cousin can go home when she needs to and I can fly back with a one way ticket.

Now begins the self talk that drives me nuts, “do I really, really need to do this? ”  I keep wondering if I just take more steroids or go back to San Antonio or push harder on my doctors here, maybe I can get it solved in Texas.

I actually got a call back from the surgeon in San Antonio yesterday.  The remembered who I was!  They wanted to schedule me for a biopsy.  This is after I called them every day for over a week and they couldn’t find a file indicating I was ever their patient.

But, oh, I hate to spend all this money and time in Florida.  I feel like it had better be worth it.

I am familiar with all the stages of this process now: A. Sick and no diagnosis.  B.  Talking to specialist after specialist here in Austin. C. Hospital. D. Growing awareness that I may need to go back to Mayo.  E. Decision to go.  F. Appointment wrangling and details. G. Self doubt and guilt.

Rinse, repeat.

I am too tired to make good decisions right now.  And what is really bugging me, besides pain?

I’m gaining weight.

I know, that’s deep.  Really deep.  I look like the  Goodyear blimp.

Do I really have to go to Mayo again?

Yes. Yes I do.

 

This is a post I am putting directly onto this site. It is not really an essay or blog post.  I just want to share with any potential readers a bit about Mayo Jacksonville and the fact that I am going back for my third visit there in three years.

Lately, (for the last year) my medical mystery du jour has been upper right quadrant pain.  This has    blossomed and grown and now become unmanageable and intense.  I have tried numerous specialists and tests here in Texas hoping to get the issue solved.  At this point, no one in the Austin/San Antonio area can seem to help me and my situation seems to grow worse daily.  So, I have decided call on the doctors at Mayo in Jacksonville.  This is where my “real” doctors are.

Mayo is the only place I know where they put together the whole picture and do not see a patient as little slices.  At Mayo they work up your whole body and consult between specialties to come up with a differential diagnosis.  Because I have several over lapping immune diseases which complicate any kind of diagnostic process, it seems I must have this type of diagnostic approach.  It is frustrating in the extreme.

I am grateful that I have been to the Mayo twice and know what to expect and how to deal with everything but I am also very frustrated that medicine is practiced in such a half assed manner elsewhere.  Without communication and collaboration, differential diagnosis (the process of putting together all the pieces in the puzzle) doesn’t work!

So, here I go again.  I cannot afford to do it and yet I cannot afford to not do it.  My appointment is a month away and it is way too far in the future.  I will call each and every day and ask for a cancellation.  That is what the nice lady in Florida said to do…

I hope she doesn’t get tired of hearing from me.

🙂