Pseudo-what?

So I’ve been fighting lung issues on top of the fibromyalgia, Myasthenia, diabetes, etc.  I have something called pseudomonas aeruginosa colonizing in my lungs.  I knew I had a pseudomonas bacterium, but I didn’t know the specific strain.  Well, this one is the worst.  It can cause nectrotizing faciitis, as well as sepsis and a host of other “lovely” complications.

I was supposed to go to a surgical consult on Tuesday to discuss my candidacy for bariatric surgery.  Just this year Medicare started covering “the sleeve” gastrectomy, where they do not rearrange any of my anatomy.  This is the only type of bariatric surgery I was comfortable with.

So what on earth does some weird bacteria and “the sleeve” have to do with each other? Well, my dear MG friend Karen had this same bacteria last year.  It did lead to sepsis in her case, which led to mental, emotional and physical changes that are non-reversible.   

She had an infection in a port she had placed for MG treatments.  It got infected with P. aeruginosa, and then she got some other dinosaur sounding infections, “flesh-eating disease,” sepsis, and it nearly killed her.  She had to have her wound (where the port had been taken out) scrubbed and packed frequently.  And I KNOW that it was excruciating for her.

The point is this pseudomonas aeruginosa is BAD news.  It’s nasty stuff.  And I’m one of the lucky ones that gets to have that particular strain.  Therefore, I will not be undergoing any surgeries that are not absolutely necessary.  All I need is for these little buggers to get into my bloodstream.  I’d be a goner then. 

So that’s my story today.  Another battle to fight.  Another day to conquer.  Good thing I have the Ultimate Warrior on my side, and He will get me through yet another “thing” health-wise.  I’m telling you, if I did not have the hope that God brings, if I did not have the knowledge that Jesus is my Savior and Lord, and that one day I will be free from all this garbage, from this shell, this body, this diseased, burdened wreck, I would not be alive.  Bottom line.

If I did not believe with everything in me that there WILL be a day when there are no more tears, no more pain, no more hurting, where I will have a perfect body, one without illness, one that can sing again…. What would be the point of living through all this?  There wouldn’t be. 

So I carry on, until the day my Savior comes to carry ME home.

Numbers

Over 1,000:  the number of plasmapheresis treatments I have had in the last 12 1/2 years.

6:  the number of liters of oxygen I'm on at night so I don't starve my brain again.

8:  the number of doctors I have to see on a REGULAR basis.

37:  the number of pills I take each day.

5:  the number of "official" diagnoses I have

2:  the number of liters of oxygen I'm on right now because I'm so tired I can't keep my eyes open and have had a headache for 3 weeks.

4:30:  the time I finally get to see my chiropractor to reset me so I can walk again without pain!

613:   the number of things on my to-do list that never get done.

3:  the number of CT's I've had in the last 15 months

1:  the number of nodules I have in my lung 

4000:  the number of dollars we pay out of pocket as a maximum for insurance, that we always meet within 3-4 months.

0:  the number of my metabolism. 

22:  the number of medications and vitamins/suppliments I take every day

17:  the number of prescriptions I have to keep track of

ONE:  the number of the God who is in control of everything listed above and more.  

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us... Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies.  For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have?  But if we hope for what we do not yet have, we wait for it patiently.   In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.  And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.  And we know that in all things God works for the good of those who love him, who have been called according to his purpose.     Romans 8:18 and 23-28

Dead Roosters

I thought maybe we could use a funny, so this is a repost from October 13, 2008.

I TOLD him it would happen.

As soon as we knew that Henrietta was actually Henry, I said he had to go.

We got chickens this year around Easter. I love them. I love the eggs. We SPECIFICALLY picked out all girls. Or so we thought!

Growing up in the city, animals were pets. Period. So I'm learning about this country life, and the fact that you can actually HAVE an animal, NOT have it be a pet, and EAT it if you want. Whoa. We have thus started small, with chickens. They are so funny to watch...they run around the yard and chase birds.

I only named 2 of them, so I wouldn't get attached. We had 20 all together, but one died about 2 days after we got it. Yes, I bawled like a baby. I made Doug bury it.

Anywho...I digress. Henrietta, one beautiful bird that I named, started crowing one day. Well, crap. That meant Henrietta was really Henry, and we had to decide what to do. I wanted to find a home for Henry right away, although if you've never seen a rooster crow up close and personal it's quite entertaining. It appears as if, at the end of the cock-a-doodle-doo, that Henry's eyeballs were about to pop out from the strain. I didn't realize roosters could have expressive faces. HYSTERICAL. I laughed so hard I almost peed.

Then, when Doug's back was at it's worst, I was going out in the morning to let the chickens out. Day One: uneventful. Day Two: the attack. I opened the chicken door on the near side first. Mistake. By the time I opened the far door, and walked back to the gate, Henry attacked. I had shorts on. He charged and pecked my leg. I turned and punted. Even though his wings were clipped, Henry flew.

I told Doug, if he ONCE goes after Jacob, I will kill him myself. (The rooster, not Doug.)

Well, Saturday It Happened. Doug had the gate open, and the chickens were milling about, and I felt very proud of my fowl ownership and newly acquired egg-collecting skills. Then, I saw that Henry was out. I placed myself in between Jacob and Henry, ready to go on the offense. Somehow, Henry skirted me while Jacob took off running, and Henry flew right into him, pecked his nose, and knocked him down.

Now, I am NOT a proponent of cruelty to animals. It was purely the Mama Bear in me. I kicked that rooster harder than I thought I could. He was pretty tough though...he went down and immediately got up for more.

So Doug came out and I said, "Get your gun."

He didn't listen, so I said, "I'm serious."

He said, "Um, why?"

I said, "Because I'm going to shoot Henry."

Something about my choice or words, the half crazed glare in my eyes, or maybe the gravel in my voice and the screaming child in my arms had something to do with it. But the man said nothing, turned back to the house, and got the gun. I wanted to do it, but apparently something about my lunatic state prevented my husband from giving me a loaded firearm. So, he did the deed.

We started plucking, but he didn't even have enough meat on him to bother. He was all beak and feathers. I asked Doug if he wanted another feather pillow, but he passed. So we buried Henry too.

I read this blog post and was just slack-jawed.  A doctor's point of view, raw and honest.  Please read this, and you may have a little bit more understanding of my life.

Here is the originial link:  http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

And please read this page too: http://doctor-rob.org/

THIS is a man who KNOWS what it means to be a doctor.

Anyway, here is the article:

A Letter to Patients With Chronic Disease

by Rob on July 14, 2010 · 284 comments

in Being a Doctor, Best Of, Just Stuff Kind of Thingies, Personal Musings

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
Sincerely,
Dr. Rob
Post Script: This post has generated a huge amount of conversation and interest (as witnessed by the large number of comments!).  I very much appreciate the dialogue it has spawned both here and across the web.  I’ve subsequently written follow-up posts explaining my thoughts in more detail – largely in response to the comments here.  One of them discusses in more detail my own experiences as a doctor and the second talks of the importance of  knowing and being known.  Reading these will give you a better picture of my thought process and perspective on this.
Dr. Rob

Ain't No Sunshine

(sung to the tune of "Ain't No Sunshine" by Bill Withers)

Ain't no sunshine when he screams
It's a mess when he runs amok
Ain't no good when he turns red
And he's never red too long
Anytime he goes awry

Wonder this time if he'll learn
Momma won't give in this way
Wonder if he'll stop the "screech"
Long enough to understand
He's not getting his own way!

And I know, I know, I know, I know,
I know, I know, I know, I know, I know,
I know, I know, I know, I know, I know,
I know, I know, I know, I know, I know,
I know, I know, I know, I know, I know,
I know, I know,
That my little boy will be back
And the sunshine will return
After the tantrum goes away......

Ain't no sunshine when he cries,
Only tears and fits and stomps
Ain't no sunshine when he yells,
But he'll be back to his old self

In no time at all
He'll be back to my sweet boy
And then he'll understand
I mean no harm anytime
I don't let him get his way!

Okay I took a little liberty with the last chorus.  Or verse.  Or bridge, whatever it is.

And again, to my mom and dad, I humbly apologize for being self-centered and ungrateful for whatever I was self-centered and ungrateful about, because now that I'M a parent, and I have a REALLY well-behaved child, I KNOW I acted that way if Jacob can. :/

Thank God His mercies are new every morning....for ALL of us. :)

Jacob's First Game

I'm a horrible mother and didn't take my camera to Jacob's first game Monday night.  And I SO wish I had....  I should've taken a video camera.  I was so proud.  HE was so proud.  And he had so much fun....

He got his very first hit ever, in his very first game ever.  He had no idea what to do!  Everyone is yelling "Run!  Run!" (which they did with most of the kids on the team...) so Jacob, eyes as big as saucers, goes running down the first base line...holding the bat straight up and down and out to the side. 

Oh. My. Gosh.  It was SO stinkin' funny.  Everyone is like, "Drop the bat!  Drop the bat!"  But God bless him, he just ran all the way and got on base.  Then one of the coaches took the bat. :D  It was awesome.

He even got to run around ALL the bases and score for his team.  It was a shutout.  We won like 15-0.

But then last night we had our second game.  Even though it was 85 degrees and I was MG-weak, I went.  Thankfully there was a constant breeze.  Otherwise I don't know if I would have made it.  We played a much better team last night.  They had some GOOD hitters.  I think we lost 8-6, but it's hard to keep track when there's so much going on. 

It's like, you're watching your OWN kid to make sure he's not picking his nose or playing in the dirt, or sitting down in the field...you kinda miss some of the other stuff.  I tell ya what though... How absolutely awesome to watch these kids playing and having a blast.  They are learning, they are having fun, and they're not all uber-competitive.  It's FUN.  Oh, and the coaches are FANTASTIC!  Super good guys teaching kids how to play, how to be good sports, and how to have fun.

Jacob is just hysterical out there....he half hops/skips/runs to his position (after he asks where left field is...)  But for a kid who has never played baseball in his life, I think he's doing pretty darn good.  Two games a week is crazy though.  And they added a practice tomorrow because the kids weren't exactly "on task" last night.

But I will be staying home for that one.  It's just really fun seeing Jacob interact with all the kids, making friends, and playing on a team.  I was a little nervous that he'd be freaked out, but he's doing great.  He's such a big boy....but he sure looks tiny out there in his uniform and little cleats!

So stay tuned for more Bad News Bears action.  I'm sure I'll have more stories to tell, and next time I won't forget my camera!

Baseball and Pheresis

That's my boy!

Now those are two things you always think of together, aren't they?

Yah.  Jacob had baseball practice last night...they all had to be in full uniform because they were getting team pictures done too (and of course individual if you wanted it....so I of COURSE got the key chain, the 5x7 (and one for you mom), the button, the team photo....)  Jacob is just SO stinking cute out there!  Half the time it's like the Bad News Bears.  But so precious.  (Except for Chuckie... see yesterday's post...)

But the kids are just darling.  There are a couple who are pretty good!  They can throw well... Jacob bats really well...and he's a lefty, so he's a good asset.  But of course I'm his mother, so I'm going to say that!

Tomorrow is pheresis.  I just start to feel better from the Hideous Illness that befell our family towards the end of MARCH...now, I get to go tomorrow to get all my blood sucked out and feel like crap so I can feel better again.  YAY ME!!

Or not.

Plus, Jacob is going to miss his last practice on Friday because I have an appointment in Grand Rapids, plus pheresis, so we'll never be back to Allegan by 6.  And his first game is Monday already!  They've only had a handful of practices because it's been so rainy....  But it will be fun.

They have a really great coach...Jacob loves to help him.  Got to talk to him a little bit about MG, as he asked what treatments I was receiving. (I told him Jacob wouldn't be there Friday because I'd be in the hospital in Grand Rapids.) He asked really intelligent questions, and it was cool to have just a casual but informative discussion about MG.  Spread the word!!

So I should be fine for Monday's game...Doug can push me in a wheelchair if not. I wouldn't miss it for the world!