Wednesday, November 16, 2016

A Few Basic Facts

Found this on Pinterest, just sharing.  Basic facts about RA that most people don't even know.

I also want to add that this banner does not even talk about the extra-articular issues with RA, such as RA-Lung which is terminal.  If somebody ever says to you "yeah, but it won't kill you" you can school them.  Yes, RA can and does kill.  Rest in Peace Glen Frye.

Tuesday, November 15, 2016

Up To This Point....

After a right-lung flare that I began to journal (I journal all flares now) on 28 September, that I thought had ended by the end of the week of 21 October, but no.  On Saturday, 22 October, I woke up and the right lung was beginning to swell again.  On Monday evening I was washing dishes, trying to be careful because the right lung was swollen and hurty.  But surprisingly not as swollen as it had been in the weeks before, which made what happened all the more dumb-founding.  I was washing a dish, felt a "pop" in my right side, and an immediate  extream amount of pain.  First thought that came to my mind, "omgosh, I've cracked a rib!"

The next day I called Dr. G's office to see if I could get worked in for an x-ray.  I've never cracked, fractured or broken (Tim "schooled" me on the terminology, Thanks love) any ribs, but I'd heard that, like a broken toe, there's really not much that can be done except binding.  I'm already on pain meds, and prednisone, so really all I wanted was a confirmation, and to make sure no piece of bone had sharded off.  So they tell me Dr. G is off until Thursday the 27th, and would I mind seeing the doctor-on-call?  I said that would be fine, all I need is an x-ray, and I explained to the nice lady I was speaking with about the lung flare I was getting over and how Dr. G and I monitor my lungs close.  Well, I do anyway.  This was at 8:30a.m.   Finally at 2:30p.m., I get a call back.  Aside:  by noon, I had already given up on being seen and possibly not even getting a call back, so I had called them back and just made an appointment for as soon as I could get in, which by the way, was not going to be until Friday November 4, a full week and 3 days out.  I digress:
So, at 2:30pm I finally get a call back tell me "the doctor-on-call says that since Dr. G has already been monitoring this situation, he says you need to wait till he gets back and see him.  Oh and take some asprin for the pain."   *cue deer-in-headlights-look-and-crickets-chirping*.  Then only thing I could manage was "thanks", and I hung up.

I got up and had Tim take me to the walk-in clinic.  One x-ray later, not one but TWO fractured ribs.  Frustrated?  You betcha.  I left the clinic and got Dr. G's office manager on the phone and told him what had happened, and how I got "blown off" and if doctor-on-call would have bothered to take 30 seconds to pull up my record on that little lap top they all carry around, he would have seen my history, and probably I would have gotten an x-ray.  maybe.  Either way, bad bad service.  So, the office manager assures me that he will investigate, and make sure that Dr. G is brought up to date as soon as he returns.  You know...I really REALLY thought that somebody up there would call and check on me by Friday, I really did, wasn't Dr. G told?  But no, nothing.  They've called to check on me before.  But not this time.  No well check, no phone call, nothing.  Until I had my appointment a week later.  When I was ushered into the exam room, Dr. G's nurse, JN says "So what are we checking today?"  I just looked at her like "you have GOT to be kidding me???"  But I was nice and said "so I guess nobody said anything about what happened to my ribs last week?"  and she put her head down and said "Yes, Dr. G knows about it".  I decided, it just wasn't worth it.  Don't get me wrong, I love Dr. G. and his nurse JN.  Dr. G has snatched me off the edge a couple times.  Its some of his staff that is infuriating.  Sorry, but I have to agree with Tim, some of them will make you want to choke the life out of them.  And the two ladies that sit up front, I swear somebody needs to assure them that "smiling" will not crack their face.  nasty nasty attitude, make you feel like they are presenting your with a gift by allowing you to be seen.  Sorry, I digressed again, but I could tell by the look on JN's face, that some serious "talking" had indeed been done.   And when Dr. G came in a few minutes later, he assured me that he had had a long "sit-down" with the doctor-on-call about my situation.  See, I know what happened.  Because it happens to those of us with chronic painful illnesses, they automatically assume you're looking for pain meds.  doctor-on-call assumed I was looking for some pain meds, which again just confirms that he never even bothered to look at my record or he would have seen I'm already on pain meds.  I felt abandonded.  But anyway.

Over this past weekend, the weekend of 12 November 2016 - I woke up Saturday morning in a coughing fit, and after 3 good weeks of healing, re-injured the ribs.  To the point that they hurt as much or worse than they originally did.  Tim had an "episode", and of course I said something about his reckless behavior, which pissed him off, and I got the silent treatment for the rest of the weekend.  By Sunday, you know an injury always feels worse the next day, by Sunday morning the next day, I was in some pretty serious pain, and swelling.  And I'm pretty sure Tim thinks I was putting on.  He sat there and didn't move and watched me on-hand a laundry basket, he wouldn't even move his chair a bit so I could get around him and I almost tripped on the chair.  He heard me suffering all day long.  And never even asked if I was alright. 

I got up and came to work yesterday.  Took me a while to get showered and dressed, but I made it.  And I worked all day.  By the time I got off, everything was worn off, and I was in some hot pain.  ohmygosh the pain.  So of course I'm grunting as I come in the door, every blasted move is like searing white hot pain in my side and he says in a not-so-nice-kinda-snippy-voice "Are you STILL hurting THAT bad?"  I just looked at him a second and said, "remember I told you I reinjured myself from a coughing fit Saturday?"  No, he didn't remember, because he was too busy being pissed off at me.  He barely listens to a word I say, and then only to correct me, or talk down to me, or snap my head off.  I asked him Sunday morning if he wanted anything from the store, I was going to get a fountain drink (I love a fountain drink instead of can), and he looked at me with complete disdain and said "Didn't you JUST go to walmart yesterday???"  in a real snotty voice.  Sometimes, he acts like the very unfortunate fact that I live in the same house with him is irritating.  I'm never right about anything, I'm dumb as a box of rocks, I never had an idea that would work.  makes me wonder how I ever fed myself before he came into my life.  but anyway, I didn't mean to go all "there".  Because honestly, most of the time, he's a huge help and I don't know what I'd do without him.  Its just when he has an "episode", it reminds me so much of mama and brad.  Its those days, I'm ready to check out.  Its those days when I lose the will to keep fighting this monster that is slowly killing me.

Dr. I (My rheumy) say's "you're not nearly as bad off as some of my other intersticials".  Dr. G says "but!  you've got time."  What ever you say.  I know how I feel.

And after this bad weekend (so many bad weekends all the time), I've about decided not to retire.  I can't even imagine going home and being there day in and day out, in that chair, with someone who barely makes conversation with me, unless I'm letting him talk.  All I ever seem to do is just give him topics.  I try, but he grabs it and goes.  20 minutes later, I come to and he's still talking and I have no idea what he's talking about.  He is never willing to just be quiet and listen to me.  So I don't try any more.  I can't imagine going home and sitting in that chair every day and every night, I'll die of depression in less than a year.  I'm already depressed.  I've been in constant, non-stop pain for over 8 weeks.  Non stop.  Never ending.  Only managing.  Also, its amazing the great service you can get at a clinic when you tell them up front you don't need pain meds.  They will stumble over themselves to help you.  Sad sad sad sad sad.  Hey, I went to the ER 2 years ago with a torn trapezoid muscle in my shoulder, and got accused of being a junkie there for the meds.  You pain-killer-junkies out there, thanks a lot.  Because of YOU, those of us who need them, have to go through hell and back to get them, and keep them.  So thanks for the solid!  You guys are right up there with the meth-heads who ruined it for everybody with descent OTC cold meds. 

I've vented enough today. 

Thursday, November 3, 2016

Post Number 1

Because one more voice for RA can't hurt.

The purpose of this blog is to document my journey with RA from this point on.  Diagnosed 11 years ago with RA, last year I got a devastating diagnosis.  A common  extra-articular manifestation of RA is RA-Lung, also known as Intersticial Lung Disease.  (so common that my first Rheumy must have *assumed* I knew, because she certainly NEVER said a word about the possibilities in the 8 years I saw her before I fired her 3 years ago.  Long story, another day)

There are so many misconceptions about RA, and the tv adverts for our meds don't help.  Believe me, I've been on Humira for 9 years.  It has never made me feel well enough to put a play ground together, or be a professional chef, and I'm sure Phil Mickelson is being paid for his time (he has scoriatic arthritis, not RA.  and I'm not sure the difference there).  I would guess that if you pool 100 people and ask them just basic questions about RA, most of them would say its just "arthritis".  Most people do not know the difference between OA and RA.  OA is what your granny has, its wear and tear.  RA is auto-immune and incurable and progressive.  Big difference!

So much to say, but there's time.  Today as an introduction, I'll keep it brief.  Since making the decision this week to move forward with disability retirement after a lung flare so bad, it fractured two ribs, and after basically being abandoned by my doctors office during his absence while this flare was happening, I knew it was time to begin to blog the rest of this journey.  In a few months, I'm going to have a lot more time on my hands.  30 years is long enough.  And as one person said, "if its going to start cracking your bones, its time to go home".  Yep.  Time to close this door after 30 years of dedicated service, and go on home.  I have a grand daughter I need to be a real grandmother to before the ILD does me in.  There's more to life than working now.  And after running the numbers, it will be tight, but we'll make it.  I want to go home and live, not stay here until I die.

So join won't you?  This blog is going to be brutally honest.  Because one thing I have learned is that only somebody with RA really knows what its like, not even doctors.  That's the sad part.  That even most doctors are just groping around in the dark with this vicious monster of a disease.

My current Rheumy actually said to me back in the spring, during my first real bad lung flare, "you're not nearly as bad off as some of my other intersticials..."  as I sat there, and every breath was a knife in my back.  I began to wonder....just how bad do I have to be before I'm "not as bad off...". 

Stuff like that.  Those are the things I want to talk about.  I'm tired of watching tv commercials that bring this disease down to the level of a flu.  And there is a plethora of video's on youtube that promise you CAN be healed from RA, all you have to do is go vegan/homeopathic/acupuncture/meditation/glutten free/no sugar/vicks vapo rub  just pick one and you too will be healed from this incurable disease.  *cue major eye roll*

I am terminal.  And that's the other reason I'm doing this.  One day, after I'm gone, my doctors are going to get a card with this blog address on it so they can come and read what I went through.  I've read the average life span after ILD diagnosis is about 4 years, and I'm down one.  My GP says "you've got time though"  do I?  how much?  you can't tell me.  You know why?  I do.  I know why because I've actually done the research.  You have to do a biopsy of lung tissue to see just how far and fast it is progressing.  Even HRCT will not show you that.  All I know, is how I feel.  All I know is how my lungs function today, compared to this time last year.  And it is a great diminished difference.  That's all I know.  I'm no doctor.  But I've learned that sometimes, even the doctors don't know.

But this blog is also to help others with this dreadful disease.  If my journey or experiences can help even one person, or encourage someone, then mission accomplished.

Welcome to my RA world.