Wednesday, July 19, 2017

RA-Lung Disease.....How I got here - Take One

I was reading through an RA page on Facebook and came across a question someone asked about chest pain, and shortness of breath with RA.  I was kind of taken by how blase' (at least it seemed that way to me) folks were about it, people with RA.  Which, to me, is kind of scary.  But you know...I was there one time.  I had no idea about the possible organ involvement.  And when I did find out, I was pretty "blase'" too.  I'm embarrassed to admit, I was also in that dream-world of "it happens to other people".  Then it happened to me. 

And I don't think I've ever dedicated a post to that time.  That horrible, scary, sick, time.  I was so sick, so close to death and didn't even know it.  I thought it was costochondritis, and just let the pain (and fever.....duh) go.  This was in early July 2015.  I kept thinking "eh, I have a rheumy appointment August 10, it can wait.  Just one more thing I gotta learn to live with".  HA!!  little did I know.  I was so stupid.  And my stupidity almost killed me. 

Dr. G and I put our heads together and we came to the conclusion that late one night in June, I aspirated stomach acid.  It was bad enough that I almost passed out from coughing and not getting any air, every time I coughed, it burned like fire coming up, and by the time I got to a place I could breath, I was out of the bed and lying on the floor.  I thought I got it all up.  I didn't, and didn't think anything more about it.  Dr. G said that's what caused the infection.  Dr. Eye, my rheumy says the RA lung was probably already simmering ( I agree, I'd been having tiny little chest pains for about a year) in the back ground and the infection boiled it over, so to speak.  And of course, once the ILD was boiling, there's no turning it off.  Its a done deal.

Anyway- The pain started and the fevers, then it got to the point it was very painful to even turn my upper torso.  And yet I kept saying "eh, I have a rheumy appointment in a few weeks, its all good".   So technically, the stomach acid I didn't get up, was boiling away at my right lung.  By the time I got to the rheumy on 10 August, two months had passed since the late-night-aspiration.  She took an xray and I went back to work.  4 hours later, her nurse called me, frantic.  Telling me they had already called Dr G's office and sent him a copy of the xray, and I had "walking pneumonia".  I started to shake.  Oh shit.  What the hell have I done to myself.  I hung up and called Dr. G's office.  This was a Friday, and he was out.  They did get the  xray and the report, and the doctor on call had sent me an antibiotic scrip to my pharmacy.  I needed to start them immediately, and come in Monday to see Dr G.  Friends, the look on his face when he walked in the exam room scared the living daylights out of me.  He gave me the full-load on what was happening, the collapsed lung, the huge infection, the huge plural effusion that would need draining (WHAT?), I just started to cry.  And then I remember that night I almost choked on stomach acid.  He just shook his head and said "yep, that will do it."

Many many xrays, weeks of antibiotics, I was in Dr. G's office at least once a week and sometimes more, for two months, a second plural effusion and a visit to a pulmonologist, Dr. H. At this point, we were now in November 2015, still on antibiotics.   He looked at my records and the labs that were done on the fluid drained from my lung and said, "yes, this is RA Lung.  I know you are still on antibiotics, but you need to get back on the Humira, and I think that will stop the effusions"  he was right.  It did refill just a bit, and Its still there today, but not enough to warrant the expense and trouble of another thoracentesis.  He also said, very matter of factly, that RA Lung is considered terminal, with average life span about 2 1/2 to 4 years, depending on how quickly I progress.  I was numb.  I went back to work and began to Google.....and cry.  Everything changed, in that moment of time.  Suddenly, I was that "other person" that these things happen to.  My priorities changed in a nano second.  I can't remember which doctor said it, but I was told another week to 10 days, and the infection would have killed me.  I almost died.

Today, I still have the chronic effusion, and Dr G said the HRCT I had a week ago is showing that its a little bigger.  So when I see him next week to talk about and Upper GI, we're going to talk about another thoracentesis.  I just shake my head at the thought of that. Yes, I've been through worse.  But having what is basically syphoning fluid from my lung (like stealing gas from a car), and going through my back, with nothing but a local deadening of the skin....its not the worst thing, but its not pleasant.  *huge sigh*  I don't want to do it again.  Tears come to my eyes just thinking about it.  But if it has to be done, it has to be done.  But I don't have to like it.

Also, in healthy people, the lungs generally lay across the diaphragm.  My right lung does not.  It curls backwards in on itself.  Dr G says that permanent damage and scar tissue.  My right lung is FUBAR.

I'm tired now, so I'll end for today.  But we'll pick this up tomorrow because I want to talk about this crap at the walk-in-clinic from Monday.  It all fits together, don't worry.  I'm not going to pull you down a rabbit hole.  :)

Till then, ya'll be sweet

Monday, July 17, 2017

Crying just makes it worse

So Saturday was my birthday.  Technically, in some places on the globe, Saturday is the last day of the week.  Well, it was the last day of the week from Hell.  It just got worse after I got home from the hospital.

Everything was all cool till Wednesday I went to get in my car, and realized that when the Mr. cut the grass, evidently it threw a rock at my car, and shattered the back window.  $400 or there abouts.  Perfect, I'm buming rides again, or driving the tractor (the Mr.'s truck).  *sigh*  Then Saturday came.

My friend-girls took me out for Chinese Friday night, wonderful!  And they loaded me up with yarn store gift cards (they know what I like).  Then Saturday.......(It was my birthday)

I had to go to my friend Pam's house so she could give me my Humira injection because dummy-me forgot it Friday so the work-nurse could give it to me, and of course I forgot to take it with me to the Chinese place so Pam could do it there.  So I had to go to her house.  As I was leaving, I fell.  On her concrete drive way.  I fell hard.  Nobody was around, her curtains were drawn, nobody saw me.  And I just lay there for a minute to catch my breath.  My right knee felt like it was on fire, and my left lung took a punch too.  So much so, that by today, I figured I was wrong about the lung, and maybe I'd actually cracked another rib.  So I zipped (read:  bummed a ride) across the street to the walk in clinic.  No cracked/fractured/broken ribs.  Dr. there said they were really bruised, and I figure I was probably right in the first.  When I landed on my left side, it "accordianed" my lung (I felt it, it hurt), and now my lung is angry and flared up.  Hurts to breath.  hurts to cough, hurts to cry, hurts to talk.  Damn the only thing that doesn't hurt is to pee.  Sorry, I'm just really down today.

So walk-in-clinic-doctor is more concerned with what he says is a "mass" on my right lung, and "when was the last time  you had a CT?"  I started to laugh, and told him about the HRCT, the Echo, the EKG, the Arterial blood draw, the stress test, just to start, that I had just a week ago.  He was staggard.  Dr. G didn't say anything about a "mass".  He *did* say that the chronic plural effusion I've had for two years looks like its bigger and we may have to address another thoracentesis (Oh God please no, not again!), but Dr. G is at a conference in a land far far away this week, and I can't get to him until next Friday.  SO!  I'm not going to worry.  If Dr. G, and my cardiologist saw it, and were not concerned enough to "get right on this NOW", then I'm ok.  I really think its probably the effusion this young turk doctor is looking at.  And he IS young.  But anyway.  So, yeah, I fell and skint my knee up, and threw my left lung into a mega flare.  Its not over yet.........

Saturday evening - I get a snarky txt from son #1.  Another of his typical accusatory txt, accusing us of something we didn't do.  Let me put it short and sweet.  Dept. of Human Svc. Child Support Division, has finally caught up with him.   They sent the letter to my house.  Mr. called son #2 because we know they talk now and then, trying to get a mailing address for him to forward it, this was Tuesday last week the day after I got home from the hospital.  So Saturday, I get this txt saying that "I'd really appreciate it if you would stop opening my mail and discussing my private business with other people....blah blah blah".  I'd had enough.  usually I would not respond, but this time I did.

I told him, first of all, the damn letter is sitting right here, unopened, we never opened it, wouldn't do that.  Second, we didn't discuss his personal business with anybody other than his brother, and that was to attempt to get an address.  I  have enough of my own business to deal with, don't have time to be all up in your drama, been dealing with your drama since you were 12.  We don't even know where you live.  and further more "since you kicked us to the curb, remember, you don't "associate" with us, do me a big favor, don't ever text me again unless its to say "hi".  I  have nothing to discuss with you.  You made this bed, lie in it."  So then he text back trying to be the "good guy" so I look bad (Can you say "borderline"?  I saw my mother master that one), and he got all nice and ended saying God Bless and he was just "going by what he heard (and thought the worst of course because his dad and I are so evil!)  oh puleeeeeze.  Keep your fake humility!  You cuss me like a cur dog to my back and on facebook but God bless me???  I can NOT believe I gave birth to this child.  its like he's an alien.  Oh, he also responded ( I guess in response to my saying we don't know where he lives) "you and dad drove out here 2 years ago mom"  I said "Damn son, I know what city you live in, but you moved houses a month ago!  I can't just put your city on the envelope, bless it, and hope it gets to you!"  Yes he's my son.  And I will love him till I take my last breath, and my heart will never heal from the hurt he has caused me.  yes, I'm in a bad mood.  Sorry.

I've hurt for two days, I can barely breath, my youngest son who's my rock star, forgot my birthday, AND!!  To top it off today, the air conditioner in my house went out today, and its nearly 100 degrees Ferenhite (or however you spell it, I don't care at the moment, you get the picture).

And lastly, the replacement for me that was hired.....she backed out.  effing great.  wonderful.  fabulous.  If I drank, I'd have one today.

Friday, July 14, 2017

A Heart Scare - A Short Hospital Stay - Tummy issues worsen - Is this all connected? -UPDATED

Saturday afternoon, the 8th July, that circle in the middle of my chest I've complained about before, hurt.  <-----understatement.

It started slowly, and over about a minute, the pain built to a 9.  I haven't had 9 pain since my DVT.  It stayed there for at least 3 minutes, then just as I was about to dial 911, it began to subside.  Scared the begeebus out of me.  Also, while it was happening, I reached for a pain pill, and swallowed that with a drink water.  As the water was going down, when it hit that spot that was hurting, my pain went from a 9 to a 14.  Once the water and the pill hit my tummy, it went back to just the 9.  The pain was excruciating.  Its a new level of pain, its never hurt like that.  When it was over, I was spent.  While it was happening, I couldn't speak, I could barely breath.

Monday morning, soon as I got to my desk, I called Dr. G.  Lucky for me, he had a cancelation.  So I got there at 2:00, and described what happened.  So he says that he wants to run this test and this test and this one and this one, "you want to let me just put you inpatient?  It would be much faster and probably cheaper".  So I checked in Monday afternoon.  And I wasn't even comfy in my bed when they came and got me for the first test.  An HRCT.  been there done that.  Then the worst part happened.  After I got back to my room, a nurse came for an arterial blood draw.  Let that sink in.  ARTERIAL blood draw.  At least she was honest with me "I won't lie to you, this is going to hurt.  I have to go all the way to the artery, and that's deep."  I think I let an F-bomb slip once.  And I cried, and the Mr. held my other hand.  I hope I never have to do that again.

The heart stress test wasn't too bad.  I've had that before.

So, end result, my heart is fine.  I didn't have a heart attack.  Dr. G said "but we're not stopping.  I want to find out what is cause all this pain.  So if the heart is fine, next step will be an Upper GI to check the esophagus" .  So that's the next thing.  And we will do that outpatient.  I have to make a follow up with Dr. G. and I'm hoping that G.I. Associates can get me in there in the next couple weeks, or sooner if possible.  I'm going to GI Associates, because they will put you out to do it.  I need that.  Insurance will pay for it, I have a very sensitive gag reflex.  I can't have them sticking tubes down my throat and I'm awake.

More good news too!  The lung blood clots are absorbed! :)   Due to infarction, I don't get the benefits of breathing better, but the clots are gone.  And THAT is a good thing.

Lungs are trashed.  I knew that. 

And!  I don't know if I brought home a new bug from the hospital or what, but omg....the tummy cramps and the IBS with D and N and sometimes V.  The reason I suspect a bug is because the Mr. is having same symptoms.  I don't know, hopefully this will run its course in a day or so.  I feel a little better than yesterday, but its still touch and go.  And we don't move too far away from the bathroom.

I haven't made a full day this week.  And as usual when I leave the hospital, my arms look like I'm a crack head, I got stuck so many times.  Well, ya'll have a good weekend.  Tomorrow is my birthday :)
My friend-girls are taking me out to dinner tonight, and the thought of it is not pleasant, but its Chinese so I will probably just settle for some egg drop soup.  You know that stuff is magic, and will cure what ails you.  Its the big 5..0 !  geez-louise......50.  What happened to 18???  it went by so fast, I really didn't even have time to enjoy it.   Till next time....

Ya'll be sweet.

Later that same day.....
I went across the street to the Chinese place and got some egg drop soup.  Miracle liquid in a bowl.  man my tummy feels better!  What is it in this stuff??  I'm going to have to do some research.  Too bad it won't cure RA, but dang if you have some tummy problems, egg drop soup is the bomb!  I feel 100% better.

Friday, July 7, 2017

Funeral For a Friend - Life goes on

We laid to rest today, one of my oldest friends.  Oldest as in time, not age. 

She and I met in 6th grade, 1978.  We were not in the same home-room, but we had a class or two together, and there was always recess.  Then 7th grade came, twice the number of class changes.  We still only had a few classes together, but she and I and another girl, Lisa (whom we also met in 6th grade), became a clique.  We were the 3 musketeers!  Not really, but the 3 of us were welded to the hips.  We passed notes between classes, ate lunch together, talked about boys, and dreamed about a future.

She came up rough with a father who drank way too much, and loved way too little I think, and a mother who worked her fingers to the bone to make up the difference and keep the engine running.  Long story short, life just beat the crap out of her.  Like most of  us, it wasn't all bad, she raised a couple of beautiful kids too.  But this last year has been the worst of her life.  An old story, husband has a mid-life, leaves wife of 30-something years for a younger woman, nasty divorce ensues, battle lines drawn, punches thrown, bail's posted, until finally it was over.  And she drank.  More than she should have.  And she stopped caring I think.  I dunno.  But she was getting better.  Learning to live on her own for the first time in her life, a great circle of friends who loved her to pieces and watched over her.  Just when we thought it was over, her brighter days were coming, she had even been talking about dating again.  Just when you thought it was safe to go back in the water, tragedy.  Her mother passed away suddenly, unexpectedly.  Her last solid rock, was gone.   Less than a week later, my friend was found passed away in her apartment.  And apparently passed quietly in her sleep.  It was the last straw, her little heart just couldn't take any more. 

She grieved her self to death.  Over a sorry rat of a husband, and a loving mother she couldn't live without.
My friend passed away.  And I am sad.

Tuesday, July 4, 2017

A Passing

My very good friend and someone I have been friends with since we were 12 years old, passed away yesterday.  That's all I can say about that right now.  Rest in peace finally my dear.  I will never forget you ever.

Thursday, June 29, 2017

Tummy Issues.....Still.

I missed work yesterday.  Tummy issues keep coming, never ending, only a break of a few days, then its back to IBS with D....and sometimes N too.  **sigh**

I'm not in a good place today.  But anyway.

Sent of a letter of inquiry Tuesday, to the home office personnel administration, asking for their help in getting my package pulled from the bottom.  We'll see.  I think the official offer was *supposed* to be made to my replacement, yesterday.  I wasn't here so I dunno if that happened, and I really don't want to ask the boss, because I've pestered him enough about it.  It will happen when its time I guess.

Going to sit here today and just nurse my queasy belly.  Nothing to see here.....

Lets enjoy something funny.  One of my all time favorite shows, without the original 3, it will never be the same, the BBC should just give it up.

The Best of Top Gear Best Bits and Funny Moments

Tuesday, June 27, 2017

A Good Laugh For Today - My Story and I'm Sticking To It

You know what's embarrassing and yet extreamly funny?  When you are confident you're alone in the office, and you already have bowel issues anyway, and you cut a big one.  Then you hear the bosses chair move in the other room, like he's stifling a laugh.  And suddenly it hits you, "I think he heard could he not, it was a 6.5 on the Richter scale! Busted!"   You just have to play it off.  You know?  :) :) :)  Hey!  Don't act like you never cut a big one, its the meds ok?  That's my story, and I'm sticking to it.  Even as adults....breaking wind is still funny.  He got up and went to a meeting, but he could barely make eye contact.  MWAHAHAHAH.....he walked out and I started to laugh uncontrollably.  Ah well....if that's the worst thing I have to deal with today, I'm in pretty good shape.
Ya'll be sweet, and don't hold it in, it hurts and you might rip something you need.