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.

The Week From The Pit

Okay. 

So Sunday was okay.  It was mostly fun.  Just really, really, busy.  Went with my mom and dad to get them a new computer and therefore assisted them in joining the 21st century! Whoo-Hoo!!!  Then it was hooking it up, (Thank you Doug) and downloading and uploading and sideloading (hey, don't want to leave anyone out)...

Then lessons.  Oh, and lunch in between at Steak and Shake, which Jacob loves, everyone else likes, and by everyone, I mean EVERYONE.  Oh my gravy.  There were SO many people there.  Screaming kids, whiny adults, weak and hungry normal people (that would be us).  Well, kids eat free on weekends.  Ah.  Note to self:  being in a room with that many people, unruly children (and therefore redundantly, germs), ridiculously inept parents and a bunch of hungry people is NOT worth a free, otherwise overpriced, grilled cheese and juice box.

So we move on to Monday.  Just felt like crap.  It's time for pheresis, and the day before just knocked me out.  Very long day.  Very long.

Tuesday AM started out better.  Started.  Until I clean my trach.  It had been hurting for a couple of days, and sometimes it's just an irritation that goes away, and other times it means I have to change trachs. (I have 2).  Sometimes just taking the one I have in out, washing it and putting it back in does the trick.  (I always get two of the same exact thing, but one is always more comfortable.  Don't ask.  I don't know).

So I take this one out, and put it the other one, and all h$ll breaks loose.  Or, specifically, a gigantic granuloma breaks lose.  So what is a granuloma?  "A granuloma is a benign growth that results from irritation or trauma." www.voicemedicine.com


So.  I have several granulomas around my trach, and they will never completely go away.  Why?


"Simply removing the granuloma surgically without correcting the irritation that caused it will result in regrowth in the overwhelming majority of cases. In fact, treating the underlying irritation properly generally makes surgery unnecessary, as the granuloma will recede by itself."  www.voicemedicine.com 

And since my trach is the underlying problem of the irritation, and I have to breathe.....well, you get the picture.       

So Tuesday a part of a giant granuloma broke loose from its base, and decided to occlude about 1/3 of my airway.  Now, when you already have about 60% lung function on your best day, a 33% occlusion of your only airway is NOT a good thing.  I tried to stay calm, as freaking out would only make breathing more difficult.  I immediately jumped on facebook and asked for prayer, because I KNEW I could not do this alone.

I ended up going to the ER at Metro, because neither Allegan nor St. Mary's in Grand Rapids have an in-house ENT.  I don't have a babysitter, so my sister (THANK YOU THANK YOU THANK YOU) went to my parents house to watch Jacob (I didn't even know at the time they had a dr. appt.)  So we head north, 45 minutes to my folks', and head to Metro.  I have to say, they are efficient!  I was being brought to a room before Doug even got in from parking the car!  There were NO other patients waiting, which is why...)

So the ENT comes down, and after much debate, I take the trach out, and she starts burning off the offending part of the granuloma with silver nitrate.  Anyone who tells you that granuloma tissue has no feeling, or that silver nitrate doesn't hurt, LIES.

I have used silver nitrate before on the outside of my stoma (the whole in my neck) but NEVER on the INSIDE.  Good Lord in Heaven, now I know why.  So here I lay, on this gurney, half sitting up because I can't lay flat, and this woman is burning flesh out of my only breathing source.  No anesthesia, no numbing anything, no painkillers.  Just Git-r-done.

THEN I had to shove my trach back into this pain filled burned and bleeding cavity while 17 people and their brothers watch. And I had no mirror. It's very difficult to override your brain, (which is made to alert you to AVOID pain) and cause yourself pain on purpose.

It's like those old cartoons with the angel/devil on the shoulders:

Brain: NO!!  Stop!  This hurts!  No pain!  That's what I'm telling you!!

Hand:  Shove it in, you need to breathe!

Brain:  No!  I won't let you!

Hand:  I will be victorious {insert evil laugh, cuz I can't right now}

Anyway, you get the idea.  Finally get it in, and the first thing I say is "PAIN!"  Then comes the morphine, and I forgive everyone in the room.  Even my brain and hand.

So the beautiful thing about silver nitrate is that is keeps working.  So today, I still feel the effects of the silver (even though they "neutralized it" with saline...)  mmm-hm.  My stoma feels like someone took a hot curling iron and decided to try to "insert here." OUCH. Now I have to make an appointment with an ENT to have the rest of the granulomas surgically removed. Oh joy, and happiness!

But I can breathe.  So.  It is what it is. (However, the next time I hear someone complain about something compeltely insignificant or just plain stupid like a bad hair day, ya better duck...just sayin'.)

Then comes Wednesday:  Up at 5:20 AM to go to get tortured plasmapheresis.  I have to say, it couldn't have gone smoother, thank you Jesus!!  THEN we got room service for lunch (that was cool) and mine was free! (Well, we all know what free means) and then it was off to the endocrinologist.

From that appointment:  My blood sugar is perfect, don't change a thing. (yay!)  Who is my fibromyalgia doc?  Don't have one.  No one takes it seriously.  So we're working on that...  I asked her about who to see about chronic pain.  She said call your doc and tell him you want to talk about a "pain contract."  That means that I sign something that says they'll give me painkillers if I agree to not sell them or snort them or try to get more from another doc, etc.  

I was like, "Oh, just like the thing I have to sign when I get my allergy medicine that says I won't make meth."

Like if I was some creepy criminally minded drug addict and meth head my signature would be more important to me than my habit. Whatever.  Just another ludicrous example of the society we live in.

So yeah.  Today it's just me and Jacob and three dogs, and I feel like death warmed over from pheresis, and the burning, bleeding trach adds a nice touch as well.

But I'm here.  Tomorrow is day 2 of pheresis, then Tuesday I have to have a tooth rebuilt, and Wednedsay, back to the hospital for pheresis and an appt. with my pulmonologist.

I LOVE being me!!! : )

Thanks for hanging in reading this...I know it was quite long, but as you can see, I haven't had much time to post.

Monday, Monday

Haven't slept the best the last few nights. Just trying to hang in there until Wednesday. I know once this first treatment is over I will feel better (emotionally). I'm just keyed up, I guess. I didn't think I was, but I guess I am a little.

Then there's the "let's pick up the dog puke" game that we played three times today. SOMEONE needs to make indestructible dog toys. Plastic toys that dogs can eat that make them throw up should just be illegal. I love my dogs, but that's. just. wrong.

Phone call to the vet, phone call to my sister, my hubby, I've gotten exactly NOTHING done today.

Plus, my sister is having her gallbladder out tomorrow, and I'll be on my way to Canton, MICHIGAN (my brother thought it was Ohio)...it's just stressful. (And the weather is predicted to be freezing rain. Nice.) My folks are coming home early from Florida, but still....I just don't like being all scattered over the country. I wish, wish, wish we all lived within 10 miles of each other.

Thank God for friends who are willing to help me. Relatives who ARE friends. And other friends. My "old" high school friend (who is younger than I am) is taking Jacob while we're gone. What a blessing.

So please just continue to pray for my family...my sister who is having her gallbladder out doesn't have insurance until April 1st, so they have to pay for everything. She's selling candy bars and making cans to bring to local businesses...Going to ask her church to do a bake sale to help pay for expenses. Surgery isn't cheap. Doug will be taking a box of candy bars to work!

Anyway. Trying to just let the Lord deal with it all, because He knows I can't! My shoulders are wide, but not that wide. And since I have the priviledge to cast my cares at the feet of the One who parted the Red Sea? The One who stopped the sun in the sky? The One who spoke the Universe into existence? Why wouldn't I??

My Poor Blackie....

My little Blackie pup will be having surgery this morning...we had a horrible accident here at the farm late yesterday afternoon. He ran right in front of the truck as Doug was pulling a trailer around to park it. He took him straight to the vet.

I was out with Joanna (she took me to the chiropractor and ran a few errands...bless her heart!!) and when I got home it seemed like Doug was here, but he wasn't, neither was Blackie. So I called him and he told me what happened; Jacob and I flew back into the car and drove the 4 miles to the vet. (Good thing Joanna was in front of me because I would have driven way too fast and gotten a ticket!)

When we got there, the doc was just reading the x-rays....2 broken hips, fractured pelvis, fractured leg. I tried so hard not to bawl. He was just sitting on the table so sweetly looking up at us with his huge dark brown eyes...I didn't sleep well at all last night....just kept thinking about my poor puppy.

He's having surgery today to fix one hip, and the doc said the rest will heal on it's own...he will have to be on "kennel rest" (puppy bed rest) so that he doesn't move a lot so the fractures can heal. I pray it goes quickly!! The doc said, though, that after all is said and done he will NOT have pain....because I was like, I'm not putting this dog through all this if he's going to live in pain. That's just not right.

Jacob is beside himself, asking when Blackie's coming home....IF he's coming home....when we can see him...it's horrible.

So, for you non animal people, just skip the rest of this post....but for the rest of you...please pray for my pup...that he heals quickly...and pray for Doug...he feels HORRIBLE. He is absolutely torn up. I'll keep you posted.