Scenes from the Immune System Wars

Well, I have been back in my own reality for almost a week now.  I must say it has been good to hit re-entry and realize that I am needed here.  My family was pretty shell-shocked when I got back.  Both kids were a mess and my husband was doing the automaton shuffle.  I cannot leave them like that; and have no results.

NO USE CRYING OVER SPILLED MILK.

(But Damn! I can cry over a broken dishwasher and a van without air conditioning because I spent it all at the effing Mayo!  WAAAAAHHHHH….)

So, I am the proud owner of a new thrush infection.  That seems to be the price I pay for any sort of steroid relief.  It sucks but I have to have a bit of steroid if I am ever going to get off of the pain pills, I think,

I have also found that diet, rest and staying relatively calm seem to help my side ache.  Today is the first day it has been bad since I returned and I am hoping yet to bring it to heel.  I am pretty sure it is bad because yesterday was Easter and I ate some dairy and some candy.  I also ate a little bit of ham, which was so salty I could almost not handle it.  It was bad/good.

I am trying to be extra clean in my diet with: no gluten exposure, very little dairy, no processed foods, and lower amounts of sugar, only a little meat and no coffee or sodas.

It seems to help. Basically, I can’t eat much.  My body cannot handle it.

I have been doing some reading about alternative pain control methods that I plan to discuss with my pain specialist tomorrow.  One of them is low dose naltrexone.  It is supposed to be an anti  opioid that can help the body deal with pain caused by autoimmune inflammation.  I have scanned several articles about it and spoken online to a lady whose doctor is prescribing the treatment.  I am hoping it is a way to get off of the pain meds I am taking now.  I believe they are squarely to blame for a lot of my gastric symptoms.

Basically, I was in pain so I was prescribed pain pills, which led to more pain, which have now led to damage.  It is a really bitter circle and it never ends but I mean to end it somehow.  I don’t think I have much of a choice.

I am interested in going back to acupuncture as well.  I have been in the past and have a wonderful  Chinese doctor who I trust implicitly.  My pain specialist is also trained in acupuncture so I will question him about this tomorrow as well.

The other thing I plan on is getting back to the pool.  I have to exercise.  Walking is fine but I need a bit more and the pool is the one place I like to go.  I have a gym membership and I plan to use it.  I guess I will pack my bag in the morning and go there straight from the doctor!

Well, we shall see where all these plans take me!

I will let you know)

 

This goes down as my longest trip to Mayo, Florida. When I fly home on Wednesday, I will have been here for two weeks and a day. It has been frustrating in the extreme and I have dealt with the nastiest doctor I have ever had here.

In the past two years when I have been out here, my experiences have been very good in the sense that I felt I was being treated as an intelligent being and that my doctors were working with me for a solution to whatever was going on. I guess you cannot expect a winner every time.

This all started so much better than my previous trips because my sweet, lovely, best friend and cousin, Kay, drove out here to meet me. I had her by my side for a whole week. Unfortunately, it was a week of nothingness. All that happened was a big deal, ninety minute MRI with a dye that made me react. (Yeah me , something new for the old allergy card!)

Basically, the doctor has been hostile in both of our meetings. And so far the meetings were a week a part. I was told by his staff that he only had office hours once a week and I just had to wait. However, he told me he was out for four days of the week I came in and that he has office hours every day. There was a ball dropped in several places there. I also learned I could have switched doctors; which would have been the best option all around. So, that first week, nothing got done but an MRI, some blood work and two trips to ER.

After my second meeting with the doctor last Wednesday, Kay had to leave to go home and care for her family. I got a menu full of tests, much like I would have expected when I first arrived. It really feels as though a week was just blown. I mean, I loved spending time with Kay, but it wasn’t the way we had planned.

The news from the MRI is that my pancreas is atrophied. But, as Mr. A-hole Dr. screamed at us, “I don’t know what your pancreas looked like before!” I understood that he wanted previous records but I was at a loss of how to get them. After making a few calls, I called his staff and they told me they would handle it. If I had known that a week before…. again… why the wait?

So here I am, it is Sunday again and I have come through several really bad days. Thursday I had an upper endoscopy and the anesthesiologist knocked me out really big time. I slept the whole day after the procedure and then through the night. I barely made it to barium swallow testing on Friday. Also, unusual for Mayo, the instructions were wrong for the testing. I assumed I needed to fast but it was not on the instructions: I was correct.

Yesterday, Saturday, dawned early and painful. I had been in horrible pain all night. My arms, my back, my hands, my wrists, my fingers, and yes, my damned upper right quadrant that sent me out here: all of it was hurting and I could not take it anymore. I was depressed and in pain and dirty. I had not bathed since Thursday morning. I am never gross like that.

I walked to the ER and they got me in pretty quickly. The lady doctor came in and I could tell right away what she thought: I was there for a high. Really? Who flies across the country to get high? I was in the middle of a Mayo clinic work-up; I had walked in from the Mayo Inn. What a dip! The nurse was an older male and seemed to be pulling for me but then I did the wrong thing: I had a full blown panic attack. All of a sudden he was not my friend and started talking to me like I was dumb. Oh My God, my daughter has anxiety disorder and suffers from panic attacks and I know how crappy it is. Being on the other side of the fence makes me physically hurt for her. I was given a Xanax under the tongue and told to go. I was not even offered a wheelchair.

So, what do you do when you are sick and far from home and having a panic attack? You take another Xanax and you pull yourself together.

I read my book and pulled myself together and got a plan. No more visits to ER. Today I cleaned up and got a ride to Target where I got my pain ‘script refilled. Then, I came back and booked my flight home for Wednesday. The last of my testing will take place tomorrow/Monday. On Tuesday I will try to see Dr. A Hole. He had asked me to see him on Thursday but I cannot spend more days doing nothing here. I have to go home. In any case I will get a complete work up and diagnosis packet from him in the mail. I would prefer to discuss it in person but we’ll see. I had to make an end date.

The people here do not realize that not everyone is from Florida. I don’t know why but that seems to be the case.

I guess a lot of the patients here are regional.

So, I have a plan, which makes me feel a little more in control. I am still hurting and my appetite has left the building. I have been a sweaty, weakened mess today. But, the only thing I can do is look forward.

This is Holy Week for Christians and Passover for Jews. I plan to celebrate Passover this year. The symbolism of slavery and the forty years spent wandering in the desert are not lost on me. Passover has been celebrated for over five thousand years and is really a ritual way of affirming G..d’s Covenant with His chosen people. He will not leave us in the desert. Eventually, against all the odds, we will be given the Ten Commandments at Mt. Sinai and we will make it to the Holy Land.

For Christians, inclusion in that covenant is made at Golgotha and completed at the empty tomb. The message is essentially the same: G…d comes back for His own: Even the stragglers.

That is a message I really need to hear just now. I am on shaky ground with my spiritual self these days. I am fighting my way back from a deep chasm of unbelief. But, all I can say is, I need that message. I need to know that the time I have spent and the money I have spent here have not been all for naught. I can’t handle that thought. Please, Lord, let there be some guidance and some light in my struggle. I want to be healthy as I possibly can be. I need to know what’s next for me. Do I have only pain to look forward to for the rest of my days? Or will I get better and have a period of remission? How can I take better care of myself?

How do I know when a doctor is looking out for my better good or when I need to move on? What is the balance between knowing too little and knowing so much that it is crippling?

There are so many questions. Perhaps that is one of the attractions of Judaism for me just now: the existential Why?

Well, this essay started with a title of May-HO. I did that because it was funny but also because that is what I feel like. I have whored myself out to Mayo once again and left myself open to suggestion. I have no control over answers; only hope and more questions.

I beg and plead that the Lord will let the doctors see and me understand some new direction for healing.

Well, I will have been in Florida exactly two weeks when I leave tomorrow.  This has  been my longest and most inconclusive trip here to date.  I suppose there are always some winners and some losers and this seems to be one of the losers.  To be fair, the doctor has not yet completed all of my testing.  There are two things yet outstanding that could change his report.  But, I really think he did not do much ‘out of the box’ or ‘differential diagnosis’ which is what I came here for.  He was not at all impressive.  In fact, he was confrontational and and condescending and rude.  I could have stayed in Texas for that.

He did not order my testing in a timely fashion and he did not follow up on the progress of my case. In essence, he was any other jerk GI doctor.  I was expecting more from a Mayo doctor, that is why I came here.   I have learned a few things; I have gastroparesis.  I also have some swallowing issues.  In addition, my pancreas seems to be atrophied.  None of these things seem to alarm the doctor at all.  He even mentioned on several occasions that they could be age related… give me a break.. I am 47!

So, all ’round, this has been a loser.

How do I keep from going crazy when I think about the time, effort and money spent here?  I don’t know.  I just can’t.  I have to get home and get on with my life the best I can.  If I need another GI doctor, I will look somewhere else in Texas.  I will not be making any more trips to Mayo in the future.  It is not worth the time, effort and money.

So much for the magic of the Mayo.  Next stop for me is going to be major dietary changes.  I am going to try an elimination diet or go totally paleo,  I don’t know which.  I have to do more research.  I have had good results from going gluten free two years ago, so I think it is worth a try to see if dietary changes can help me with this problem as well.  In addition, I have to fight like hell to get off of pain medications.  They are evil.  You need them because you are sick and they make you sick so you need them.  I don’t want to be in that cycle anymore.  It leads nowhere but down the toilet.

So, I have to do some work on myself.  That is all I know to do at this point.  So, heigh ho and away I go… Home!

Fall 2012

I have had a weird ass rash on my arms for about eight years. It comes and goes but mostly it comes. It has been biopsied three or four times by different ‘experts.’ So, now I have the lovely scars left from the rash and the scars left from the overly zealous biopsies.

I have been told it is everything from lichen planus to an immune system related rash of unknown origin.

I don’t know what it is but I know that it is caused by heat and chlorine exacerbates it. I have talked to other immuno challenged folks who say they have weird rashes too.

I have also heard it can be the harbinger of a flare.

Why is it that we know so little about these things? There seems to be a complete dearth of knowledge. The only ‘cure’ is prednisone or steroid treatment. I avoid that because it has nasty side effects for me. I become hungry, bloated, sleepless and bitchy. It is not a pretty scene.

I just wonder why no one could tell me when it all started that I was headed for disaster. It was really the first thing in a long line of things that told me I was headed down a road of crap. But, I didn’t know it.

The first year it happened I had just started a really stressful job. I was teaching middle school English in the same private school where my kids were in third grade and preschool. We had a forty five minute drive each way. I had a supervisor from hell. I kept getting really sick. It was a nightmare. So, I chalked it up to stress. It was so bad that year that my arms had to be covered. The pustules were gross.

I had flu and pneumonia.

The teachers who didn’t really want me there said I was too weak for the job. Bad scene: I went back to teaching college and had another sinus surgery. A year later I was diagnosed with CVID.

Wow. I had blocked a lot of that out: Too painful to remember.

It is really hard to ponder how much my health has dictated my life and my decisions.

God almighty but I have fought it. I cannot believe that it is now 2012 and I am no longer able to work. My teaching career is behind me for now.

I am a stay home mom.

Wow. How the hell did this happen?

Where do I go from here?

I try to figure it out. I will go backwards and unravel this. I will find out in reverse what has happened to me and hopefully, I can help someone else from falling down the same rabbit hole.

Because, the hole is deep and there are many strange animals inside. I am bruised all over from trying to climb out.

I don’t recommend it.

Hurry up and wait: that is the mantra for this visit to Mayo.  The GI doctor I was sent to see must be great and wonderful, like Oz.  He only has time to see patients in clinic once a week, on Wednesdays.  It would have been so nice if the staff had just told me that.

Well,I had the MRI he ordered on Friday.  It was like no other MRI I have ever had.  It took ninety minutes and involved a dye that was entirely new to me.  Of course, oddball freakazoid that I am, I had an allergic reaction to it.  But, we completed the scan.  So, today, Monday, I went up to the GI department to see if Dr. Big Wig could see me sooner than Wednesday:   NO GO.  Wednesday is his only day in the office.  So my cousin and I tried to emphasize to the GI staff that my symptoms are worse, much worse. All they could offer was a return trip to the ER.

So, to make a long and sordid story shorter, that is where we went.

While spending the morning in ER, the nice doctor there told me he had spoken with the GI team and that my MRI showed an atrophic pancreas.  So, that means my pancreas is in deep doo doo.

We have both (Kay and I ) been reading up on it like crazy, but we won’t know much else until Wednesday.

Meanwhile I am in hideous pain and waiting.

This is hell.

Hello News Hounds and welcome to the whiney channel.  We bring you all the news that is unfit to print.

After an exhausting day of navigating the nations’ crowded airways yesterday, our supreme Whiner, Katie, made it to her destination.

There were several screw ups along the way.  The big one came at the end of the day when Whiney Girl was very tired.  Her reserved ride did not show up at the airport.  Apparently he got his signals crossed and went to the Mayo for the pick up and not the airport.  Finally, however, someone from the driving service showed up.

Once checked in, Whine-a-Reimer busted tail to the cafeteria to buy something to eat for the evening before they rolled up the sidewalks.

Back in her room, she collapsed in a sweaty heap of nausea, pain and yes, flatulence.  She is not exactly the kind of woman you would take on a date!

The night was spent unloading, bathing and sleeping poorly.  So, really, nothing unusual.

As of right now, Whiney is doing her sub q infusion and waiting on her cousin to arrive. Food has no attraction whatsoever and has not been attempted.  The body of Whiney Girl is not feeling well at all.  In fact, at this point, she is planning to beg the doctor for an entirely new one.

So, that is all the news we have for now: LIVE From Mayo Florida!  Updates about Whiney Woman will follow soon.

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.