Scenes from the Immune System Wars

This has been one of “those” weeks.  I have been struggling with an infection.  I have a UTI (urinary tract  infection). For most ladies, this is fairly straight forward.  It is miserable for everyone but pretty easy to diagnose and cure.  Not for me, of course.  I am a Zebra, remember?  I look like a horse but I really am not just a horse.  I have weird stripes.  I can’t even go “neigh” properly.

Those of us in the CVID (Common Variable Immuno Disorder) world refer to ourselves as Zebras.  We all have different stripes.  Also, it comes from an old saying doctors are taught in medical school, “we you hear hoof beats, think horse.”  in other words most patients who have the same symptoms and will have the same course of cure…

However with us, the phrase goes, “when you hear hoof beats, think…. Zebra!” Zebra is the term doctors give patients who do not fit normal parameters.  We tend to not respond normally to tests and to complain a lot.  In general, we are sick and we cause a lot of trouble for doctors who are fond of curing people.  My hunch is the docs don’t like Zebras because they cannot fix us.

As a result, we often get blamed for being sick.  I know that sounds crazy but that is exactly how it is.  This week is a good example.  I ended up in ER on Sunday after five days of pain and nausea and feeling bad. The doctor got angry with me. He diagnosed my UTI but was so upset by my chart, which showed multiple visits for a mysterious gut problem, that he would not even discuss the UTI with me..  In the end I was treated as a problem child.  I was not given my prescriptions or exit orders or offered a wheelchair, just told to dress and leave. I had to call back to get my prescriptions.  Somehow, I had offended the system.  I think I might have tried to assert myself too much by explaining my issues.  When the doctor did not understand he wrote me off as a head case and drug seeking.  He got me out of there as soon as possible.

Since then, my infection has worsened.  My fever, which is never very high by normal standards is staying over 99.  This is important for me because my normal level is about 97.  Zebras have a hard time mounting much of a fever because we don’t have an immune system that fights when we get sick.  But, no one really gets that.  They just think we are nuts.

I had an ultrasound on my kidneys yesterday and I will see the nurse practitioner for my urologist today.  Maybe they will give me stronger meds.  I don’t know.  My motto now is: “expect nothing.”

Even though I am pretty sure I have a kidney infection, I cannot prove it.  My body does not tell all on a standard test.  I am a zebra.  Doctors don’t like Zebras.

I figure if I get sick enough someone will notice.  Until then, I will just trot along and feel like a zebra who got caught by a hippo while crossing a water source.  The hippo chewed my kidneys off and I feel funny but NO  PROBLEM…. I’m fine.

Just look away….

Hi there, So things are better with immunoglobulins!  I am definitely stronger.  I infused again on Wednesday, so five days out from the first infusion.  The backlash was noticeably smaller.  I am having fewer fevers and more energy.  It is exciting.

Along with this news comes a reality check.  My husband has sort of let our finances slip through his fingers.  We are in a pickle.  Most of it has to do with my medical bills.  Don’t you love the American medical system?  Here we are, arguing over the need for reform when I, who am on the most fortunate end of the system, am still screwed over by it.

What I mean is, I have good insurance and my yearly income is well above average and yet we are still drowning in copays.  Medical bills are eating us alive.

I am taking over the checkbook after 28 years of marriage.  Can I ‘fix’ the damage caused by my chronic health issues? No. But I can look them squarely in the eye and pay them off.

It is never good news when you have a chronic illness.  I  am so happy to be feeling better and yet I am paralyzed with the fear of needing more medical care. I am at a sort of impasse’.  I no longer feel like seeking new doctors and new cures.  I no longer go to the ER when I am in pain.  I just live through it.

I don’t want to spend the money on nothing and I don’t want to drag my family along for the ride.  It isn’t worth it.

There are no cures.  All I have is today and I will live it and do the that I can.

Does that sound depressing?  Really, it isn’t.  Last week was much, much worse. 🙂

 

Hi, sorry it has been a while.  I have been feeling too sick and too damned depressed to write.  It is like the well dried up and I have not had anything to say.  I have written a few essays but they are sad affairs.

After being off of my igg replacement therapy since the end of April, I finally got the go ahead to infuse yesterday. My new dr. wanted me to wait until my igg levels dipped low enough that she could prove to insurance or prove to herself (not sure) that I needed the therapy. After ten weeks of feeling like utter shit and having three infections, I won the low igg levels lottery.

I still had supplies on hand from before and the nurse said it was ok to go ahead and do my subcutaneous infusion.  I got so excited that I forgot to premedicate  myself with benedryl and tylenol.

The infusion was rough.  I reacted more than I had previously.  I was awake all night with pins and needles in every part of my body, pain and nausea.  So far this morning, I am better.  This medicine is such  a catch 22 for me.  It makes me well but the side effects are horrendous.  I just  wish I could find the perfect combo: pre meds, igg replacement brand and delivery (IV or Sub Q ) and lower the reactions. Oh well, it is a new day. 

I shall go forth and conquer!

I wonder if anyone else with chronic illness has this problem.  I am so frustrated with the way I look.  This is nothing new with me.  I have had body image issues and eating disorder issues for most of my life.  I was just sort of hoping at this point I could let some of it go. After all, I should be glad for the days when I can actually get up and move, much the less worry about my weight or my lack of muscle tone.

But I do.

I always, always, feel I am doing something wrong.

Right now I am taking a tiny dose of prednisone every day just to keep going.  I think it is playing havoc with my appetite. I want OFF the prednisone but without it the fatigue and pain make it tough to function at all.  Is there a compromise here?  I don’t know.  Until I get my infusions back, I don’t know what to do.

I need to follow my eating plan.

I need to go to the gym.

I feel a failure.

I am sabotaging myself in so many ways and yet I cannot seem to forgive myself.

Does anyone out there have this problem or is it just me?

This is just a quick note as I am about to leave and go haul kids around all afternoon.

I seem to be having a flare.  ” What is a flare?” you ask.  A flare is when my body starts attacking itself.  My autoimmune system starts going wacky. One of the biggest signs is that I have incredible itching.  My itching is usually confined to my arms.  Last night it was so bad that I could not sleep.  I took enough benedryl to kill a horse but it did not help at all.  The only relief I got was from wet rags draped over my arms.  Cortisone creams (prescription strength) are also ineffective.

The only thing that helps keep me from going entirely crazy is the knowledge that I am not alone.  All of the sites I read where there are others like me; with Mixed Connective Tissue Disease, everyone talks about ‘the itchies.’  The itchies are a bit different for each of us but they are always incurable it seems and they come and go.  I have noticed they are at their worst when some other part of me is not working too well.

For instance, I am having indigestion from HELL.  When I try to take my vitamins and other medications, it hurts.  The pain in my chest and back is excruciating.  Also, the fatigue and the aches are back.

My personal opinion is that all of this stuff is back in full force because I cannot take my igg infusion right now.  In other words, IT IS ALL RELATED.

I am praying that the dr. I plan to see in Houston in June will really ‘get’ the inter relationships of it all and can help me put more puzzle pieces together.

I desperately need that help.

Ok, onward through the fog….

Nurses:

Fall of 2012

Let me begin with the obvious here: nurses are people. They are varied and variable and they all have good days and bad.  But, as a general rule, they are unbelievably competent, patient and caring people.  I admire them.  I am a fangrl.

First, some very special nurses: my infusion ladies. For most of the last eight years I have been getting infused at one of the local hospitals in their outpatient infusion room:  It isn’t a scary place.  It has lots of recliners and a television and plenty of blankets and pillows.  There are even curtains for privacy when you need it. The nurses who work there are like dear friends who know my innermost secrets: they hold my life in their hands once a month. They watch out for any changes in my blood pressure and do whatever they can to make what is a difficult process for me, go smoothly.

I really cannot say enough what these ladies mean to me.  I look forward to seeing them and know I will be okay, no matter what happens, as long as they are there.

ER nurses are another category I have come to know well.  They have a tough job.  They need to be everywhere at once.  Patients have no patience when they are in the ER.  Everyone is having an emergency, after all.  But, each one has to be prioritized and sometimes it is impossible to please anyone.  I don’t know how they do it.  Sometimes they get pretty hardened.  Sometimes they are there without you even asking. I have come to know the signs of an ER nurse.  If he/she is overwhelmed/tired they won’t bother to hand you the call button and sort of leave hoping you won’t ask for much.  If they are fresh on duty or the E.R. is slow, they may just stop in to check on you.  But that almost never happens.  I just try to remember they are people, at work, and that I am not the only patient. It’s hard when you feel like you are falling apart but I don’t know any other way.  I say ‘thank you’ a lot and I mean it.

Floor nurses in the hospital juggle a ton of information.  Doctors are only there for a brief time once a day—if that—per patient.  They rest of it has to be done at the computer station and through pharmacy.  Interaction with the patient is every two hours for the nurse every one hour for the aide. They take your vitals and check in on you.  Usually medications, like pain meds, are every four hours. The nurse has to record everything in the computer in your room.  Each time she gives you a medication, she gets the bar code off of your hospital bracelet and then the vial before she can fill the syringe.  There is a lot of paper work involved.

Usually these nurses are so competent that nothing can ruffle them.  If something does upset them, you know it is bad.  Every once in a while you get one who is just tired of being there. You can tell.  You are just annoying no matter what you say or ask for.

There is nothing you can do about that.

Keep your eyes and ears open, some of these nurses work back to back shifts of crazy hours and start to make mistakes.  They are human and I don’t blame them.

I do blame a system that lets them or makes them work those hours.  It is not ok.

Nurses are the heart and soul of medical care. Without them, there would be nothing.  They should be the highest paid and respected parts in the whole system.

Post Script: May 10, 2013

 

I no longer go the hospital for infusion days.  I have/had switched to home infusions that are done sub q (subcutaneously) and can be done safely at home.

Unfortunately, I have spent more time in the hospital.  Everything I wrote above is true.  Nurses are heroes and heroines. They should be allowed to wear capes and shiny, reflective tights.

Last week I was in the hospital for four nights and for all that time I had only one mediocre nurse.  I think that is pretty outstanding.

This is just a quickie to say hello.  I don’t have the energy or the brains to write coherently.   I am in the hospital with a suspected case of Aseptic Meningitis.  In other words, my body did not take well to my home igg infusion of the subcutaneous medicine. This is the infusion I have been so proud I am able to take because the IV versions were making me too sick:(

I have had many reactions ever since I have tried to take igg (immunoglobulin) replacement therapy . The nasty part is that I desperately need the stuff.  My body does not produce enough iggs  and in some cases my body doesn’t produce it at all.  This problem, called Primary Immune Dysfunction or Hypogammaglobulemia, is at the root of all my health problems.Different people have deficiencies across the spectrum.  According to the textbook, my problem is an easy one.  However,  I have begun to believe that this a stack of cards and that once one fell with me the momentum just increased and   Or at least that is what I have come to understand and believe.

My body is missing some of its natural immune system and has literally turned on itself looking for answers.  The plasma product I infuse (Igg or IVIG) replaces my crappy immunoglobulins with those of healthy people.  In fact, it takes 25 thousand people to make up a batch of the medication I infuse.  It is very complicated.  When I have a reaction, one of several things can go wrong: 1. My body recognized the new, healthy cells (?) getting pumped in and says, “Yo, bitch! These aren’t ours!  Get them out of here! Attack!”  2.Or, It could be,the suspension the product is mixed with is causing me to react (possible but not probable since it seems to happen with all of the brands after a while).  3. I am a space alien and human blood products are just not compatible with my alien blood.

Personally, I am voting for number 3.

In any case, this happened to me in early December and now here I am again.  The doctor wants to take away my goodies (infusions) all together.  I can see that from his perspective that would seem logical.  But, he seems to be wearing spectacles that give him a very different view from mine.  I know that without the medication at all, I feel weak, painful and half dead.  I get all kinds of infections and feel like I will die pretty quickly.

So, what to do?

I am going to go get another opinion.  That’s all I know to do.  If the next doc says to get off of the med and stay off then maybe I will.  I don’t know.  I cannot face that thought right now.  I am doing good just to write this and think it through.

Perhaps I should start trying to find my space ship and ‘phone home.’  I can’t just sit here eating Reese’s Pieces. I need to get to a place where I fit in and my body isn’t constantly in rebellion and making me miserable.  Hey, I could turn myself in at Area 51 (that is the alien one, right?).

Maybe they have enough specimens of my race to fix me there.

Okay, I am devolving really rapidly here.  I think I will have mercy on anyone crazy enough to read this and stop.

E.T. PHONE HOME.

I have hit a  Bump in the road.  This week the pain and the fatigue caught me up and hunted me down.  Like a frightened animal, I tried to hide. It did no good.  The pain and the bone crushing fatigue that is often its dance partner,  came to find me.

I realized that no matter how much control I try to exert over my illness(es), I will never, ever win.  It seems I have to learn this lesson over and over and each time I am deeply disappointed; each time I am frightened that the good or better days won’t come back again.

I suppose it is a little like going on a ride on a small plane.  Everything is smooth and the terror of being so close to falling out of the sky is mediated for a while.  You can almost touch the clouds; there is a sense of exhilaration and “I think I can do this.”

And then, just as you settle back, Bump!  You hit an air pocket.  Your pilot, or physician, is unperturbed, “no problem” she will say.  But really, it is a problem.  Because suddenly the ground is much too close.

This how I felt this week.  I felt myself slipping closer and closer to crashing into the ground.  Finally, I succumbed and went to the ER to try and get some pain relief.  My pain was in the same place it has been for over a year; the upper right quadrant of my abdomen.  I have been trying to do acupuncture, diet, exercise and whatever else I can think of to help that pain but sometimes it just eats me alive.

I saw my rheumatologist  and she suggested I not give up on all gastroenterologists.  In fact, she wants me to return to the pancreas guy in San Antonio.  So, I called for an appointment.  I dare not build up hope for a cure.  Besides, they can’t see me for five weeks.  It is just the same old thing as it has been.

My Mayo records have not arrived yet.  It is as though I never went there for two weeks.

Truly, I got screwed over at Mayo this time.  I am angry and sad about that whole thing.  My rheumatologist is going to ask around for other pancreatic specialists in the area and help me with this so for that I am most grateful.  In the meantime, I am signed up to see a nutritional counselor that specializes in food allergies.  Also, I am trying to decide whether to come off of or stay on prednisone.  If I am off, I swell up because my body is no longer working properly without them.  If I take them, I have a constant case of thrush.

But, this is all background noise.  I just want to get from one day to the next and take care of my family.  I can do that as long as I don’t get wiped out by the pain and fatigue.  Those two partners in crime are the ones that literally take me down.

So, what to do.

Fight the good Fight.

Keep posting from the Immune System Wars.

I need to keep writing.  I have been slacking of late.  I have been editing my essays but have not written anything new.  I don’t even know if this blog is helpful at all.  I don’t think I am making the best use of it.

But it is a weapon and I must use all the weapons I have.

So, “onward through the fog” and all that.

“Chin up and all that” too.

 

 

NOTE: I suck at blogging.  I have not been going in any sort of chronological order.  I have also not been explaining things very well.  Yesterday I wrote about an ‘a ha’ moment I had when my ob/gyn spoke about chronic pain as a fire alarm going off where there is no fire.  I liked the metaphor.  What I didn’t say was that I have both chronic pain and the other kind: actual inflammation.  They are very, very hard to tease apart. In fact, I really cannot tell the difference.  So, let me explain:

As I understand it,I have fibromyalgia syndrome and a connective tissue overlap disease in addition  to my primary immune disorder.  All of this means my neurons are morons and do not fire correctly. There is also something going on with my cytokines.  I don’t really understand that yet, but I am learning.

When the connective tissue disease or MCTD (Mixed Connective Tissue Disease) was diagnosed at Mayo in 2011,  I was put on a medicine called Plaquenil. This med helps dampen the immune system so it quits attacking itself and making my tissues swell on the inside. Once that took effect, a lot of my pain subsided.

In addition, when I do my igg infusions, my pain decreases.  So, I know my pain is partially due to disease.

However, a lot of joint pain and just everyday pain remained and I was told it would be with me for life.

Thus begin a journey down the chronic pain rabbit hole. I was told to find a ‘pain doctor.’   Well, I wish I had been given some sort of guidelines.  I have written a couple of essays about these experiences but let me summarize:

First guy: sent me home with multiple narcotics and suggested I take them all at once and go on about my day.  I nearly died in a car accident.

Second guy: Seemed brilliant and gave me stuff that worked but I never saw him after first two visits.  I was shunted to his P.A. or even a Medical Assistant.  The wait times in his office were one to two hours past an appointment.  They kept increasing the medications then yelling at me for being an addict.  It was very confusing and created a sense of shame and loathing that  felt  awful.  I didn’t know what to do.

I went to Mayo again in spring of ’12 and the doctors there told me a good pain clinic works at pain relief from several angles and never just hands out pills.  So, I fired the guy I had been seeing and found someone who has a more balanced approach.

At this point, I am off of over half of the narcotics and am once again turning to acupuncture as well as trying to help myself through diet and very moderate exercise in the pool.

However, the nature of the beast is that if I push too hard, it comes back and bites me in the butt.  Sunday I felt good and the water felt wonderful.  I got excited.  It felt like my old body was back.  I jogged in the water for twenty five minutes or so.

That was a big mistake.  It caused my body to react against itself and swell on the inside.

No one seems to understand how this works exactly but somehow we trigger a response that brings on the pain and the fatigue when we ‘over do.’ The disgusting thing is, you never know when you have over done it!

I find this hard to live with.

So, in a nutshell, that is me and chronic pain.  We are not friends.

Wow. That entry from Saturday is awful!  What a whinger I am.  So, I know you are all sitting there on the edge of your seats waiting to hear the latest.  Guess what?  I learned something valuable today.  I love it when that happens.

The first half of the week has been fairly bleak.  I have been in really ouchy pain and it felt like cramps. I have also been very, very tired.  I convinced myself it was endometriosis.  I hate hypochondriacs;I sure as hell don’t want to be one.  I don’t think I am.  After all, I have several, really nasty diseases that have to be treated on a daily or weekly basis.  (For instance, I am infusing right now.)

However, that doesn’t mean I don’t want to find a reason for my chronic pain. This gets especially tricky when it moves around. The pain has been in my pelvic region this week.  It hurt from my hips back to my lower back, especially on the right side. I have felt nauseated too.

So, today I had my ultrasound scheduled at the ob/gyn’s office.  When I got there, I told them I was in pain and wanted to see the doctor if possible.  I went ahead with the ultrasound (NOT FUN) and waited another hour to see my doctor.

This doctor is one of my all time favorites.  She got me through a tough pregnancy with my son and has always been there for me.  I love her.  So, when she came in I was groaning away and spread out on the table like a lump of fat tissue.  She said, “I don’t think your problem is gynecological. We have checked out your blood work from last week and other labs, plus the ultrasound, and I just don’t see much of anything. You are NOT in menopause and I am going to put you on progesterone ten days a month to regulate your cycle for a while.”

I sort of bitched and moaned and asked some questions.  She said, “you have chronic pain issues, right?”

“Yes,” I said. “I have chronic inflammation issues.”

“Right. That means your neurons are all screwed up.  They signal a fire alarm where there is no fire.  If I go in there and dig around for something I don’t think is there, like endometriosis, I could make it all worse.”

“Oh.” I said.  Fire alarm.  Neurons.  This was starting to make sense.  Then she said,

“Did you do anything in the last few days that could have exacerbated that area?” Then it hit me like a ton of bricks.

“Oh my God! I am an idiot!  I swam on Sunday and I went twice as long and twice as hard as I have been.  I thought I was doing well.”

“You’re not an idiot, but you did set possibly set something off.”  So, now I know.

Fire! Fire! Fire! I have a strained muscle and where some people might hurt a bit, my body tells me my hip is broken.  Why?  I don’t know.  Can it ever be fixed?  I’m working on it. I went back to acupuncture this week and I( heh, heh, )started swimming more.  (Oh well.)

I think I have a long way to go.  I also remember that my right hip has been gamey since my mid twenties when I fell skiing in Switzerland.  And, that is not nearly as romantic as it sounds, really.

So, I have to remember: the fire alarm is broken.  It is good to look for fire or sniff for smoke, but I need to remember that most of the time, there is no fire: just a hare trigger.

So, lesson learned and respected today.

Let’s see if I can remember it tomorrow:)