Friday, December 22, 2017

Nasty Cough Turned Hospital Stay Turned Lung Issue

Oh my.  What a story I have to tell.  But not today.  I'm off for Christmas/New Year vacation, and recuperation.  Yes, recuperation.  I've been hospitalized again.

Short of it:  Nasty cough I had, by 10:00 pm that night, was full-blown flu.  Taken by ambulance the next morning to Emergency.  And once they took a chest x-ray, the flu was no longer front and center.  I now have a temporary pluerex tube sticking out of my chest and we are home-draining every other  day. 

That's the short version.  When I come back and have time, I will sit down and tell you everything.  ohmygod.  ohmygod.  What I have been through........again.  Hospital stay this time, 5 days.

Well, one thing's for sure, I think I now qualify as 'bad off" as some of Dr. Eye's other patients.  Then again, maybe not.  Either way, she's fired, as of this writing.

So ya'll, go have a good Christmas, and remember what its REALLY all about, and its not buying and going in debt. <><  Love on your family, and be sweet to strangers.

I'll check back in the first week in January, when I return.  Lots and lots to talk about.

Merry Christmas ya'll!!

Wednesday, December 6, 2017

Taper One Week In - A Nasty Cough - Finally Some News

Taper one week in - I am now removing 2 slivers (2 maybe 3 mg's), and so good.  That being said, my left lung is very tender (right lung, fuggitabout just lays there like a fat lazy dog).  If it gets worse as I continue to taper, or this cought gets worse.  I'll go see Dr. G.   Dr. Eye can kiss my grits, besides, it takes 3 months to get in to see her, I'd probably be dead before I could get wait.....I'm not as bad off as her other patients so I'm exaggerating my condition.  Anywho - Another sliver or 2 and I'll be at the 1/2 pill mark on my night dose.  go me!  I still don't think I'll be able to go passed 5mg a day, but hey!  5mgs a day!!!  That would be wonderful.  Any of the 1 or 4 people that actually stop by here, send me some good vibes, cross your fingers and toes, keep me in your prayers that this will actually work this time.

Yeah, nasty cough.  It started this morning when I got up.  There's a bug going around for several weeks now.  My bestie has been sick since Thanksgiving.  So far (miracles do happen) I've not cought anything.  But today....the throat is scratchy, and I'm coughing.  A lot.  A dry hacking cough.  Not fun.  Lets hope it stays with just this cough.

Finally some good news from the "powers that be" in Personnel Land about my Early Retirement/Disability.  Remember, this is not SSDI.  I am actually going to retire early because I have enough years in.  I'm too young for real retirement (I love saying that :)), so I had to apply for disability retirement, and that's what takes so long because it has to go before a board blah blah blah, but anyway.  I called up there Monday, because dangit, its been since APRIL for heavens sake.  Anyway, the nice lady I spoke with said my case had been assigned a case worker on 20 October, and was being reviewed.  "Just be patient a little longer, it looks like its not going to be much longer now"  AWRIGHT!  I really don't expect it to  happen before the holiday, but January maybe/hopefully, please please let it be January.  Again, as I've said before, once I'm retired I can give more information regarding where I work and who I work for and it will make sense as to why this has taken so long.  All will be revealed in good time.

My replacement has been in my old office now since the first week in October.  She's......different.  More on that too when I can actually talk about it.  So I'm still a buyer, but I'm out in the "shop" where all the action happens, no longer up in the turret in the executive offices with the suits and ties.  I'm out with the grease monkies, where the rubber meets the road.  And busier than a one-armed paper hanger.  But its all good.

I have a lung function test/appointment with the pulmonologist next week.  Send me some good vibes on that too.

So that's it for today.  ya'll be sweet and I'll keep you posted on the taper.
ta ta

Thursday, November 30, 2017

Prednisone Taper - Day 3

So far so good.  No fever, no problems.  Fingers crossed XX it keeps going this way.

I've been slicing a little sliver off my evening dose.  Prednisone tabs are very brittle, if you cut it the wrong way, it disintegrates into powder.  So I have to be careful.  For the first one, I just eye-balled it, visualizing 10 slices since its 10mgs.  No, I'm not taking Dr. Hyde's, ahem...I mean Dr. Eye's advice and going full-on with 1/2.  As it is, its "petering-out" on me around 5:00 in the morning.  If I took only 1/2, I'd be up at 2:00am.  If I wake up like that, I'll never go back to sleep and it will set the tone for the whole day.  I've been on prednisone full-time for 2 years.  I'm going to take it slow.  I'm going to cut one little sliver like this for at least 2 weeks.  Then I'll cut 2 little slivers and so on and so forth.  Yeah, it might take a few months, but that's ok.  I got no where else to go.  :)

You know, even though the appointment with her was a total train wreck, she was unprofessional, she judged me, she ignored me, and clearly she thought I was lying when I repeated to her what Dr. G said about the diminished air flow creeping up my should blade, because had she believed me, she'd have taken the trouble to listen, but she didn't.  And I'm convinced, that part about prednisone being as addictive as heroin, is either 1) she really doesn't know nor have any experience with a REAL addiction to a big drug (which I find hard to believe, she's a doctor, surely they studied that stuff, IDK), or 2) she knows exactly what real addiction is like but thinks I don't, and was trying to Bullsh*t me to make her point.  Even though all that is true, I really really do want to get off the prednisone if I can.  At the very least get back to "as needed".  But I've been given the impression not only by my GP but by what happens with the fevers and my lungs getting tender and swollen, that I'd never be able to get off it.  I really do want to stop taking it.  I'm tired of taking medicine that changes my personality and makes me look like the elephant man.  I wanted to ask her "you think I WANT to look like this??? You have no idea what it feels like to catch a little kid staring at you then pointing."  But anyway - I really thought I was over it, but I guess not.

When she said those things to me, I was transported back in time, I was 6 years old again, crying for mamma not to leave me with a sitter (anybody she could find willing to watch me), her telling me "I'm going to the store, I'll be back in 10 minutes"  and I didn't see her for 3 days.  I sat at the front window for THREE DAYS watching every car that drove past.  It happened quite a few times (she'd go off and party and shack-up with whatever man she had chosen for the moment).  I was never validated as a child.  My wants and needs were never considered.  It happens when your parent is a Borderline.  My mother didn't raise me, she didn't raise any of her 3 children.  I raised her.  by the time I was 11 years old, I got myself up for school, got dressed, made my own breakfast, and got myself to the school bus stop.  After 6th grade, she never saw another report card for me.  I just signed them myself and turned them in.  I always had good grades (shocker considering the hell hole I lived in), so I had nothing to hide.  Mamma, though she had a good heart, was very much about "her".  Her mental disorder is the reason I went to 13 different schools to get through 12 grades.  We'd move to a new place and soon as the "new" wore off (usually about 6 months to a year), she'd move us to a new place.  Never ever considered my schooling, what it did to me.  But anyway, when Dr. Eye said those things to me, it was like reliving that feeling, all over again.

I was very angry for a long time.  Lots of therapy, prayer, God, and just shear determination got me through, and healed a point.  I love my mamma, God rest her soul.  She loved as best as she could, with what she had to work with, a shaky mental life.  But anyway.  Mamma is a post for another day (it would take many).  She wasn't all bad, and I have some wonderful memories of her.  I don't like to think too much on the bad ones.  It tares the scab off the wound, you know?

So anyway - I've started the taper.  I feeling positive about it.  That being said, it changes NOTHING between me and Dr. Eye.  Her behavior was deplorable and uncalled for.  And personally, I think she owes me an apology, but I don't need one.  I'm a big girl, and clearly I'm the bigger person between us because I would never dream of saying something like that if I were a doctor....but that's just me.

Lets see how it goes........

Monday, November 27, 2017

Anybody Else Sick Of These "Cutesie" Self-Esteem Boosters?

I think Patientslikeme have been communicating with my rheumy.....

Some of these little "esteem boosters" are just ridiculous.  Read this one good.  This is the same thing as that dumb "pain acceptance" bs going around, which is just a nice way of saying "suck it up".  LOL  this one says "accept your pain...and it will hurt less"  what a load of shit.  That's all I'm saying.  And ya'll know, I don't usually use fowl language, but this begs for it. 

One article I read said that this "....pain acceptance is gaining momentum..."  yeah, from people who don't have chronic pain disease.  Bull Shit.  Just because its on the internet doesn't mean they won't lie, skew numbers and statistics, and try to bullshit you.  There's a mission here.

I know there are those worse off than me, I have a rheumy that doesn't miss an opportunity to remind me of that.  But I don't need to be reminded of that, to appreciate life.  Believe me, you get a diagnosis like this, you WILL appreciate life.

Monday, November 20, 2017

OK I'm Over It Now - Coolest Dream Ever!

When I got home today, I had an icky tummy.  So I laid down for a bit and fell asleep.  I dreamed of my beloved grandmother, who passed away on April 25, 1990 at the age of 81.  Beloved with whole heart.  She's the reason I didn't go too far off the rails as a young'un.  Her house is where I went when the crazy at home became too much.  Many many weekends at her house, for years.  And it was always spaghetti and peas for Sunday dinner after church, because it was my favorite.  And home made 3-layer chocolate cake with her 1 minute chocolate frosting.  Or one of her now infamous chocolate pies.  "Did Cille bring pies?"  Was often heard at family reunions, dinners-on-the-ground after Sunday service, and various other church and family functions alike.  She taught ladies Sunday school, and WMU for decades, and was a great admirer of Mr. Billy Graham, and Ms. Corrie Ten Boom.  Ask anybody who knew her, and you will usually get something like "incredible woman".  And she was.  She had no enemies, and I only ever heard her raise her voice twice in my life.  And she loved.  She loved greatly.  To this day I miss her very much.  I always figured she thought I'd go to hell over her dead body, so she held my hand and walked me to Jesus.  :)  She was a beautiful, kind, loving soul. 
So in this dream, not only did she speak to me, we held hands.  And it was so real.  I don't recall what she said, but I can almost hear her voice.  It sounded very young, and almost like music.  I just wish I could remember what she said to me.  I woke up feeling an inner peace I've not felt in a very long time.  Coolest dream ever!

Coolest G-Maw Ever.

Things To Know About Prednisone

Some People May Experience Withdrawal Symptoms On Stopping Prednisone   (click the pic to go to the article) 
This doesn’t mean that prednisone is addictive. Rather it means that it can just take a while to kick start your body back into producing cortisol again, if you have been on prednisone for longer than two weeks. Withdrawal symptoms can range from severe fatigue to weakness, body aches, joint pain, and difficulty sleeping. Talk to your doctor about slowly stopping prednisone over a period of several weeks if you need to discontinue its use.  (fever not mentioned)

Abuse and overdose
Prednisone is not an addictive substance (You don't say!). However, when going off of the medication, it’s important to work with your doctor to avoid withdrawal symptoms. Withdrawal symptoms of prednisone include weakness, fatigue, weight loss, nausea, low blood pressure, and menstrual changes.
Prednisone overdoses are generally not life-threatening. However, like with any drug, if you suspect an overdose, call poison control or emergency medical services.
Long-term high doses of steroids can cause thinning skin, easy bruising, body shape changes, increased body hair and acne, menstrual problems, impotence, and sexual performance issues. Though none of these problems are life-threatening, steroid abuse can still lead to other health complications.

Symptoms of prednisone withdrawal
Prednisone withdrawal is different from how we typically imagine withdrawal. That is, prednisone withdrawal doesn’t cause you to crave prednisone. It’s not an addictive medication. Still, it does affect your body physically and it can disrupt several of your body’s functions.
The symptoms of prednisone withdrawal can include:
  • severe fatigue
  • weakness
  • body aches
  • joint pain
Depending on how long you’ve been taking prednisone, your withdrawal symptoms may last from a few weeks to up to 12 months. This time will likely be much shorter if you follow your doctor’s instructions for slowly tapering your dosage of prednisone when you stop taking it.  (No "fever" here either)

Arguments Opposing Addictive Effects of Prednisone:

Prednisone is not addictive because:
  • Steroids are produced by the human adrenal glands, and certain diseases, tumors, or even stressful events can also increase the rate of secretion of prednisone.
  • Withdrawal symptoms can be totally avoided by tapering the dosage, which is not the case with most addictive drugs.  (hmmmm....I'm just sayin...)
  • Even if abruptly stopped, the withdrawal symptoms are rarely life-threatening and resolve spontaneously within 3-4 weeks.
In conclusion, prednisone is not classified under the category of drugs of abuse, due to its relatively low euphoric potential and inability to create a sudden or intense high, but it can nevertheless lead to withdrawal symptoms such as depression (that may progress to suicidal ideation), physiological issues like fatigue, low energy levels, changes in appetite, physical activity status and other similar features that may take up to 3-4 weeks to return to normal, even when prednisone intake has completely stopped.

I have NEVER Jonesed for prednisone. 

I rest my case Dr. Eye........

Friday, November 17, 2017

The List - Take Two

I woke up this morning thinking about that little old lady at Dr. Eye's on Wednesday.  I wish I could think as fast on my feet as I used to.  It was too late when it crossed my mind to get her name and number, because I had decided that *I* would start paying her $6 co-pay every 3 months.  But anyway.

Another thing I decided, next time Dr. Eye tells me "you're not nearly as bad off as some of my other patients", it's ON baby.  How unprofessional, de-valuing, invalidating.  Also after I told her what Dr. G said about the diminished air flow up to my shoulder, she had the nerve (which I didn't mention in the other post) to say, "well, lets wait and see what the lung doctor says next month".  Really?  She didn't even bother to listen to my chest.  She always listens to my chest.  Dr. G is 10 times the doctor she is, and has 10 times the experience, puffed up presumptuous.........ARGH!!!!!  breathing slowly.......the last time she told me I wasn't as bad as some, 3 months later I was in hospital with blood clots in both lungs, in ICU.  The first time she said it, I was in the middle of a flare that was in week 5 already ("I'd be surprised if I got a call on you").  She says that to me again, and I'm going to blast her.  I'm not paying her good money, to de-value me, and reduce my condition to a damn chest cold.

I will get over this.  But for now, I'm hurt, I'm angry, I feel used and taken advantage of, my money, my insurance money, and she didn't even listen to my chest, and basically said Dr. G's assessment isn't good enough.  I wasn't listened to.  All she did was tell me I'm fat and addicted, and shake her head a lot.

I get a "how'd we do" survey after each visit to her, in my email.  I let her know how disturbing it was to see them turning this little lady away, and I told her what a terrible world we live in when someone is refused medical care over a dang dollar, meaning she is part of the problem instead of part of the solution.  And I can't imagine how they sleep at night.  Last question on the survey "would you recommend Dr. Eye?"  I used to....but not anymore.  A means to an end.............

Thursday, November 16, 2017

Doctor EYE - You're on The List

I'm going to make this short and sweet (as if that were possible).  If you were not the only circus (rheumatologist) in town, and Dr. G would prescribe Humera, I would fire you.  Here's why:

Last month when I came for my visit, I got turned away because all I had was a check book.  Now that you have this shinny new office you're trying to pay for, and the extra staff that comes with it, suddenly you're not "set up for checks" any more, so said secretary Ms. M.  Fortunately for me, I didn't have to wait the standard 3-months to get back in to see you, and was able to squeeze into a cancelation for yesterday. Now, lets break that down "not set up for checks".  Do you have a pen?  Can you write?  Then you are set up for checks, you fill out a deposit slip and turn them in to the bank.  Electronic checks are different, and do need "set up", but they're not required by the bank, they will honor a paper check.  I understand people write rubber checks.  But can't you take into consideration that at the other clinic, I never bounced a check before?  Can you take into consideration that I also had a $10 credit on my account, and yet I was STILL turned away?  Fine, I walked away.  Didn't really feel like seeing you that day anyway.  And why try to sugar-coat it and just say what it is, you don't TAKE checks.  Gotta pay for that new building all the extra staff I guess, even if it means turning away sick people.   Fast forward to yesterday....

I came prepared this time.  I stuck back my $25 co-pay (yeah, a fortune right?) and was ready.  So I get to your office, and meet up with Ms. M.  In front of me was this little old lady with a quad walker.  When I walked up to the counter, Ms. M was in the process of turning this arthritic, little old lady away because she was SHORT ONE DOLLAR!!  Yes, that's right.  1 US dollar.  $1.  And she was going to have to wait 3 months to come back.  Ms. M then told the old lady "now, when you come back, you'll have to have your $6, ok?"  so, clearly this lady is on Medicare and her co-pay is $6.  SIX DAMN DOLLARS AND YOU WOULD TURN HER AWAY FOR A BUCK?????  That is unconscionable.  That is despicable.  I ponied up the dollar for her, bless her heart.  It got even better....

So I go back to the exam room and you come in and the first words out of your mouth are "wow!  you've gained some weight!"  my response:  "No, I stopped gaining about a year ago.  I'm within a pound of where I was last time you saw me."  (the look on your face was classic) What I didn't say was:  "why don't you take the trouble to look at my chart before you make an off-the-cuff, ill-mannered remark like that?".  I said that on the inside.  You then proceeded to tell me you think I'm "addicted" to prednisone.  yes, please cue the deer-in-headlights look.  Now, I am nothing if not informed.  I have Googled my ass off the last two years, researching and reading everything I can find out there on this RA-Lung and prednisone.  Not one paper/article (no, NOT ONE) ever said prednisone is "addictive", they all say just the opposite, that it is not addictive.  And let me repeat what you said to me  "its like being addicted to Heroin"  (I apologize on her behalf to any addicts reading this for the de-valuing of your condition by the doctor, I'm just repeating what she said).  Everything I've read says that its not addictive.  One can, however, become dependent.  And that's a whole different ball-game.  You're a doctor, you should know better.  Shame on you.  That being said, I would LOVE to tapper down, and I'm going to even take your advice and start trying.  I will journal it too.  Because every time I've ever tried to tapper down, I start to run fever.  You said "fever" is a normal withdrawal symptom and would go away in about a week.  Not one thing I have ever read about it, lists "fever" as a withdrawal symptom for prednisone.  That being said, yes, one can (and I do if I go too long without one) have withdrawal symptoms.  You said symptoms that go away within a few days to a week.  My fever doesn't stop until I up the prednisone.  And not tiny fever either.  I'm talking fever of 100 to 101 at times.  What would you do, Dr. Eye in my position?  Not only that, I have a GP telling me to take it, and I have you telling me I'm "addicted".  But again, I will try.  Because I hate it.  I want off it if I can.

Then I made mention that the days of prednisone as-needed, were long gone, and I accept that.  You guffawed me!  And that's when you, once again, compared me to your other patients.  I didn't realize this was a competition.  I think its fantastic you have ILD's with worse lungs than me who don't take as much as I do.  But its very unprofessional to say that and to expect that I should be doing the same as they do or as well as they are, when you know very damn well how individual RA is.  How every case is different.  You completely minimized my condition, and de-valued me as a patient.  Now!  According to Doctor G, who by the way, was a full fledged doctor with his own practice when you were still in Jr. High School (I'm just saying...) Dr G says the lower lobe of my right lung does not drape over my diaphragm like it does with healthy people.  Mine curls backwards in on itself and the bottom is shrivilled (like a hand that's been in the water a few minutes too long).  Remember you diagnosing me with "walking pneumonia" when what I REALLY had was a horrendous infection caused by aspirating stomach acid, and the lower half of my lung was collapsed, and a huge plural effusion, 4 months on antibiotics.   You got any patients like that Dr. Eye?  Both my lungs have spots on them that are dead.  The tissue is DEAD.  But ok, I'm not as bad off as some of your patients.  Great news for me, bad news for them.  Anyway -

Lastly, before you came in, the nurse who brought me back and took my vitals, put the oximeter on my finger.  It was 88.  Figures, I had to walk from the waiting room, so yeah.  But anyway, I mentioned that I had bought myself an oximeter.  And just walking from my bed room to the bathroom made my oxygen go down to the lower 80's/upper 70's.  You know what she said to me???  "well, those things have a tendancy to be inaccurate....." she said some other things, but at that point I was so flabbergasted, I just kept my mouth shut.  I didn't argue with her, or talk about the severe dizziness that comes with it.  What good would it do.  What I said on the inside was "so tell me, what makes yours more accurate than mine?  Yours runs on electricity, mine runs on batteries.  I didn't buy a bottom-of-the-line meter.  The one I got was over $100, next to the top-of-the-line.  I did the research, these are very accurate.  Not only that, I brought mine to work, and saw the nurse and compared her reading with hers, to mine.  Guess what?  Mine was spot on.  The same reading as the nurse here at work got with her meter.  But again, I didn't argue with her.  She was the nurse, I'm a nobody.  You know how that goes with doctors.  Then you come in Dr. Eye.  And all I got, besides I'm fat and addicted, was "uh huh...uh huh...yes..."  You basically blew me off.  And even after I told you what Dr. G said about the diminished air flow is up to my shoulder blade now, you didn't even listen to my lungs.  Dang, the stethoscope was hanging around your neck!  I walked out feeling like a big ass whinner. are on the list.

There are now 3 people on my List.  My list of people who, when they ask how I am, I always say "I've never been better!  Thanks for asking" even if I'm barely breathing, because that's what they want to hear.  As I said, if I could get my Humera from Dr. G, you'd be out.  But from now on, I will come in (with cash!) and I will smile and say how wonderful I feel, and get my scrip re-uped and go away.  You have made yourself a "means to an end".  I need you for the Humera.  But in my mind, you are no longer part of my "team".  I have one lung that is thisclose to complete shut down, but I'm not nearly as bad as some of your other patients.  I'm done with you.  And I don't respect you any more.

Thursday, September 21, 2017

It all went wrong

My departure from work has been held up.  I can't leave in October as I had hoped.  So I'm still here, and it seems I will be here at minimum until after the holidays.  And that's all I can say about that at this point.  Not without getting mad, and that just makes me feel bad.  Its ridiculous and I feel abandoned after 30 years of service, to the point that day care raised my kids (I regret that).   Like I said before, once I'm gone from here, I can be more open about where I work, and why this is taking so long.  Even though nobody here knows I blog, they still watch.  I'm sure there is somebody down in IM that knows I blog.  That's the reason I have to be very careful, with only slight references.  But once I'm gone, I can spill my guts, and I am.  Promise.

Ever since I had that horrendous chest pain a couple months back, I've not been "right" since.  The "dizzy" hasn't stopped yet, and is slowly getting worse.  Its pretty bad.  I've nearly fallen twice now.  Its starting to scare me.  Not having any trouble breathing, but it reminds me a lot of how I felt with the PE.  Just not as bad.  With the PE not only did I have severe dizzy, but my heart would pound when I moved around.  I don't have that, its just the dizzy.  And today it is really really bad.  Kind of scary.

I'm declining.  I've been what we consider "stable" for months now.  Its time for a decline again.  And I am afraid I won't survive this one.  On the other hand, I'm tired of the fight.

I've started giving things away.  The pretty sarong I bought in Cozumel, the crystal clock I got at Filenes in Boston 30 years ago.  Just the small trinkets that sort of meant something to me.  And I read they went out of business a few years ago.  :(   That was one of my favorite places to shop.  I don't know what's going to happen to all m yarn and pattern books. I've offered them up to other crafters, but the shipping is incredible.  I guess the Mr. will throw it all out.  That makes me sad.

I wonder if there's crafting in Heaven.  I think about stuff like that.

Well anyway, not really anything else to report on.  Don't feel well, but that's business as usual.

have a great day!

Tuesday, September 12, 2017

A Line Through My Name - I Gave My Self The Injection

Recently here at Huge Ass Engineering Company, a nice lady who's been here for ever and a day, 40 years to be exact, she recently retired.  Her name is Lauren.  We will miss her. 

But, yesterday I was having a conversation with my good friend Leslie, who it happens was Lauren's time-keeper, and she was telling me that yesterday as she was putting in all the labor for her group, she got to lauren's name, and she said "I just drew a line through her name, and that's the end of it".  And I realized that a little nugget someone shared with me years ago is very true.  5, 6 years after you're gone....most people won't even remember who you were.  Especially in a place this big where "new blood" is coming in all the time.  Seriously, I have office supplies older than some of these new people they've hired just out of college.  I'm not kidding.  I have a pair of scissors that have followed me my whole career.  And soon, I'll just be a line-through-my-name.

My last day is 27 October 2017.  My first day was 16 November 1986.  I was 19 years old.  I'm scared to death.  I've worked most of my life. 

Someone recently asked me what was the one thing, the one memory that stands out about my career and all my years here.  I said "how fast it went by".  Unbelievable.

I fell not too bad today.  I wonder if it will last all day.  I don't get "all day feel good" anymore.  Its usually just a few hours.  That may sound whinny, but it is what it is. 

I gave myself my Humira injection.  All by my self.  For the first time.  :)  The pen is not so bad.  I remember now why I didn't like it, it hurts worse than the syringe.  But since I'm going home, and won't have access to a nurse every day, the pen is something me and the Mr. can do.  well, *he* was doing it.  But now that I see how easy it is, I can do it too :)  That's a good thing.

We are getting some showers today.  I suppose this is coming from Irma.  Not much, just some sprinkles and its really cloudy and over cast.  We have relatives in Tampa.  They made it through, and don't even have any damage.  That's a blessing.

30 Years, and just a line through my name.  I need peace about this. 

Wednesday, September 6, 2017

Say It Isn't So - And more old pics

For some odd reason....I've been revisiting some of my favorite music.  This one was my favorite H&O tune.  Timeless.  It came out about the time I thought I was "in love" the first time and got my heart broke.  LOL.  This song was at the top of the charts when I moved to Corpus Christi, Texas.  Me and mom lived in a little bungalow on North Beach, just under the Bay Bridge.  Memories..........

Enjoy!  I sure did  :) 

Early 2002 - 3 years before the RA diagnosis

2007 at the meteor crater in Arizona -
I look at these pictures and think My God what this
disease has done to me....

It Keeps Happening

Morning sick.  I don't understand this.  I've been late  to work 4 days in the last week, and even called in on Friday.  Didn't come at all.  Why is this happening?  It doesn't last long, fortunately.  But it comes on really fast, really hard, and then its gone.  Sometimes I hurl.  But if I concentrate real hard on something else, I can keep that from happening.  But with the pollen, its difficult not to cough, especially in the morning now.  Morning cough is getting worse.  And coughing sometimes kicks in the gag reflex.  And also, if I start to sneeze, even that *may* trigger the gag reflex too, and here we go.  I haven't had fever in a while now, so that's good. 

This morning, it started around 4:30am.  I got up and went to the bathroom for morning "constitution" and got back in my chair.  After about an hour it began to subside and I felt confident enough to take something for pain.  Decided to play it safe, and wait on the prednisone and all the others I take in the morning.  By 6:00, I was much better, and went back to sleep.  Woke up around 7:00 and realized I was going to be late....again.  So I got up and got a shower, and just the movement of getting up and moving around started up the tummy sick again.  After showering and partially dressing, I just sat in the chair for about another 1/2 hour.  It was 8:45 before I pulled into the lot.

I can't do this much longer.  I can't.  I've made a decision.  Phone call or no phone call, October 27 is my last day.  The local department of SSI is downstairs.  I'll stop down there, they already have all my paper work, they're just waiting for me to say "go".  I have to apply for that anyway, so be it.   I have 7 weeks of vacation time saved that I've been working sick to save, that I intend to sell back.  Well, if I have to take a few weeks, then so be it.  I CAN NOT KEEP DOING THIS.  Its too much.

Memory Lane

My brother and I have been going through and sharing with each other old pictures in our possession.  This is one of my brother, my dad, and me.  Taken in 1969.  I was 2.  :)  Boy, my dad was a looker at 34, eh?  Even though he had already began to loose his hair.

Thursday, August 31, 2017

Pains Rains and Hurricanes

Rain rain rain rain.  We're 8 hours by car, East of Houston.  And still it rains.   I contacted my friends in Corpus Christi, they're all ok.  My son, that one that pretends I'm dead, is ok.  But it took getting Aunt Sandra to txt him to find out, he wouldn't answer us.

Rain.  I heard someone say this is the wettest summer we've had in 24 years.  And you know, I remember that summer.  It was the summer before son #2 was born and our a/c went out.  And I remember that we didn't suffer too much from the heat because it rained so much.  The Mr. and I even went to a minor league baseball game that summer, and ended up getting rained out.  that was one wet summer.  but anyway -

Haven't felt real well since I got this UTI.  I finished the antibiotics, but I'm not convinced I'm over it.  Won't go TMI on you, but well, I just don't think this is over.  I'm thinking its going to take another round.  I'm going to wait out the weekend and see if it bounces back on me before I call.  Don't want to take antibiotics unless I have too.  Just don't feel good.  Can't really remember the last time I felt good.  I'd have to look back on my blog posts to see when I had a "good day" last.  I'm sorry if it sounds like I'm whining.  I have a chronic disease, I can do that if I want.  And I rarely whine anyway.  I'm a master at sucking-it-up, and the fake smile.  But sometimes, I just can't muster it up.  Its getting pretty tight in my chest now.  Really tight.

Two mornings this week, I've woke up puking.  So I've taken to waiting until right before I walk out the door to take my meds.  I refunded a prednisone this morning.  YUK!!!  I don't even take my pain meds until I'm sure the sick is gone.  but anyway, tis what it tis.

The rain makes me ache.  The full-body-feel-like-I'm-getting-the-flu ache.  And still, no phone call from personnel.  However, the official inquiry into my case that was started in July by the "outside help" I enlisted, gave personnel 60 days to respond as to where my case is in the process, and that 60 days are up on Tuesday.  I really feel like I'm about to get "the call".  Once I'm gone from here and I can speak more freely about where and whom I work for, I can better explain these delay's and why it takes so long for this to happen.  But for now, I can't.  As long as I'm still employed here, I have to keep things on the down-low.  I blog from work, and they watch what we do, so sometimes I have to speak in code.  :)  Along those same lines, you may recall how the replacement the bosses selected, backed out on us.  Well, they got a brand new list of selectee's on Monday.  And boss 2 called me in and showed a couple of them to me, the resume's are good, one lady has worked here before and wants to come back, so there'd be very very little training.  I hope they select her.  It would be a very smooth transition.  Boss asked my opinion and I said if I was the one hitting the button, I'd select her.  She's a young married mother of 3, she's not in school, and her husband works here in another department.  I think it would be a good fit.  If he's already "hit the button", then our local personnel has to make the official offer to her, once she accepts, it really only a couple of weeks before we can bring her on.  Our rules are nobody starts in the middle of a pay period.   Its all good.

Ha!  just as I was writing this, resource mgt calls and wants to know what my exit date is.  they are doing the budget for 2018.  I just laughed and told her I dunno.  We talked for a bit and she said "considering what you're going through, you have a great attitude".  well, as I've said before.  throwing myself on the floor, crying and clutching my hair "why me!?!"  isn't going to solve a thing, and it will make my heart rate go up.  So no point in having a bad attitude.  A good attitude makes me feel good.  Its one of the few things I still have control over in this hand I've been dealt.  I'm a normal human, I get down some days.  I cry at night when I'm alone.  I cry in the car when I'm alone. I cry when I think about the fact that I probably will not live to see my grand babies grow to adults.  But then I dry it up and go on.  I can't change it.  I didn't cause it.  The only thing I can do at this point, is make my life as happy and as stress free as I possibly can.  And I only want people who want to be here in my life, at my party.  It is what it is.  Only a miracle from God can change this.  And it can!  He can do it if its His will.  He can change it "just like that".  But I feel at this point, after all these years, if He were going to perform a miracle healing for me, it would have happened by now.  That's not to say it won't at this point.  And the Lord knows my heart.  But I also have to prepare.  What's the old saying "expect the best but prepare for the worst".  That way, I'm ready either way.  There are those who think that being a Believer automatically qualifies us for healing and if we don't get healed then its our fault and we don't have enough faith.  BALONEY.  That's not what my Bible says.  And I don't want to go any further with that line of thinking.  Those are private thoughts only for me.

So here I sit still, looking out my huge window facing the busy street out front.  Watching the rain pour down.  Watching people crossing the parking lot with umbrellas.  Wondering when the rain will ever stop.  I'm SICK OF RAIN.  All I want to do today is go home and watch knit and crochet videos on Youtube.  Can't wait to reveal this "Cameo" afghan I'm making for the grand-girlie!!! SQUWEEE!  It is awesome!

Ok, so hopefully where ever you are, you're not in the line of fire of this storm and you're nice and dry.
Ya'll be sweet.

Thursday, August 24, 2017

Happy Birthday My Friend - My Sister In Sickness

Today is Cass's birthday. 


Stop by here , or  here, and wish her a happy birthday.  She's going through a lot, health wise, at the moment.  lets lift her up!  hang in there hun!  We're praying the Embrel will do the trick and get you back on solid ground again.  Much love and gentle hugs, and a dang good happy birthday to you!!

Monday, August 21, 2017

Still Here

I've been a bit busy this week.  Left lung still tender, but very well controlled.  Its at its worse at night.  Hiccuping feels like a stab believe it or not.  And actually, the pain I now feel could just be a "new normal" with the left lung.  I mean really now, I'm even now pushing the prednisone back up to every 11 hours.  Seriously!  I actually forgot yesterday to take it on time, that's normal for me, and was almost two hours late before I started getting the "million-bug-march" feeling inside my body.  That being said, I'm going to do every 11 hours for a week or so, and see what happens.  If I don't start running fever again, like I usually do, then I'm going for every 12 hours again.  but, still have to get through the fall-flare, and the pollen just started, it hasn't hit its stride just yet.  That won't happen until late September early October.  Wouldn't it be wonderful if I could get back to just 10mg a day!!??  maybe the moon face would go away.  maybe I could lose some of this belly.  Maybe I might actually look normal again, instead of like Joseph Merrick (God rest his good soul).


Just haven't been myself lately.  If I actually still had hormones I'd say I'm kind of "pms'y".  Bluesy, and grumpy.  Probably the prednisone.  Yes, I actually do blame everything on the prednisone.  Maybe we could achieve world peace if nobody had to take prednisone.  I'm just sayin....

I watch knit and crochet video's and get all excited and want to make something, and then the feeling goes away.  My grand-girlie has a birthday on September 11, and I'm only 2 squares into her Cameo Afghan (ohmygosh it is going to be so pretty!  All pink and black, like Chanel).  So 2 down about 18 to go.  It is a very quick square to make.  If I set my self down and focus, I can crank out a square in about an hour.  I just get in my chair and think "I don't wanna".  So I put in Pride and Prejudice (the Colin Firth version, thank you) and veg in my chair watching Mr. Darcy trying not to love Elizabeth, on the dvd.  And laughing at Mr. Collins and his silly self kissing Lady Cathrine's butt.  Gosh I love that movie.  The Kiera Knightly version is a good one too.  It has Dame Judy Dench as Lady Cathrine, and she does it so well!  I love that scene where she accosts Elizabeth trying to get her to promise not to become engaged to Mr. Darcy, I know it by heart, I can speak the words for the entire scene.  "....scandalously patched up marriage.  are the shades of Pemberly to be thus polluted?  Now tell me once and for all....are you engages to him?"   I love that scene, you go Judy!  Judy bad can it be.  She's excellent.  Next to Helen Miren.  but yeah, I've lost my craft mojo, and I can't find it.  I have a gift certificate I got for my birthday last month, to the local high-end yarn shop, and its still in my purse!!!  Only a knitter/crocheter will understand the depths of how incredible that is.

I'll close off today.  Just not feeling it.  Must be the eclipse.  Or the prednisone.

Friday, August 11, 2017

Friday Post

So far, I'm on top of the flare.  Good enough that I've not had to increase the prednisone.  yet.  The left lung is letting me know when its time, for sure.  But not like I know it *can* get, like back last Fall, when I could only get 5 hours out of 10mg, and was up to 50mg a day.  Yeah.  It can get like that.  It HAS gotten like that.  So good.  Its bareable.  Lets hope it stays this way.  Lord please let it stay this way.  I ran short on pain meds though.  Its hard to sleep when it hurts like hell just to recline, like somebody stabbing me in the chest.  So this last week, I've been taking a Norco before bed.  Like I said, I ran short.  But my pick up day was Sunday, which doesn't count, there were 31 days in July, and Dr. G takes off a lot on Friday's.  Like every other Friday.  Anyway, I called yesterday to try and get a new scrip.  LOL...they didn't even call me to say "no".  I got the auto-call this morning saying it was ready for pickup.  So, from now on, I don't care how bad I'm hurting, I get three a day.  that's it.  I'll just make up the difference with Tylenol.  yes Tylenol will eff up your liver over time, but they know that.  But I won't run short again.  I'll suffer.  And suffer I do sometimes.

See that's one of the things that just blows my mind.  A few years ago, "they" revamped the old Hydrocodone, took out most of the acetametaphin (Tylenol) because it can damage the liver, and re-named it "Norco".  So, those of us with chronic pain diseases only get so much 'real pain relief' because of the witch hunt on painkillers, so we have to supplement with Tylenol.  So, you tell me.  6 on one hand, half-dozen on the other.  makes perfect sense doesn't it???  Whether it comes by way of a big pain killer, or OTC Tylenol....acetemetaphin is acetametaphin is acetametaphin.  And what's worse for me, after the second blood clot scare, I'm now on blood thinner for life.  Which means I could no longer take my beloved Alleve, with naproxen sodium.  That stuff is WONDERFUL for inflammation.  But not for me, not anymore.  So I supplement with Tylenol.  The stuff that damages the liver, and they took it out of Norco because of that, so I just have to "put it back in".   SMH.

Going to eat bar-b-q tomorrow at young-son's house with him and his sweet wife, my DIL.  The one who's going to have a baby!!  SQUWEEEE!  so......excited.  a little boy.  :)  *grin*  Must finish grand-girlies birthday afghan pretty quick now, so I can start his.  and the matching turtle.  that's what she's requested.....a turtle.  I gotta go to Hobby Lobby and get some fiber fill for that.

I think we're getting close to having *another* person in here to replace me.  you may recall, the last lady who accepted the position, backed out for a better offer.  whatev.  Considering my view (top floor, front of the building, double window), and what I do, and how well we're treated.  Well anyway, good luck with that hon.  Anyway, we've interviewed two ladies this week.  And I am hoping they make a decision by Friday so the offer can get made and I can get somebody in here to train before I leave.

Before I leave.....still don't have the official "phone call" yet.  Still waiting.......
Hope to be out of here by September.  We'll see.

Well, ya'll have a good weekend.  Chill and be still.  And as my dear friend Cass says "breath easy".

Ya'll be sweet.

Wednesday, August 9, 2017

Its Already Started

The fall pollen, which  *shouldn't* even start until next month, has already started.  As I recall Spring pollen was early too.  I got through the Spring virtually unscathed.  I don't think that is going to be the case this time.  Left lung has been swollen and tender since the weekend.  I keep thinking, it cracked two ribs last fall pollen, what's it going to do this time.
We'll see.

Friday, August 4, 2017

A New Normal

In the 30 years we've been married, there are only just a small few of those years that we didn't not have a pet of some sort.  We've had quite a broad range of pets, thanks to the kids.  Dogs, cats (at one time, we had 17 cats.  All outside cats, thank you), fish, rabbits, and even an African aquatic frog.  many many dogs, many cats.

So it was strange, yesterday when I got home from work.  Tink didn't come out of my room (from napping all day) and greet me, as she always does.  And that was sad.  Its been over 20 years since we had no living pet in the house.  We love our animals.   Can't watch those ASPCA commercials on tv.  why do they do that??  Isn't that exploiting those poor animals?  Anyway, we change the channel when those come on.  There was a time way back, before I got sick, that we dreamed of buying a big plot of land before we retired, and take in sick or hurt animals, and those nobody wanted, those that would die in the wild on their own.  The three-legged dog, the blind cat, the abused pony.  The Mr. and I both have huge hearts for animals.  I told him we could turn it into a charity and take donations and have fund raisers for food and vet care expenses.  Alas, God had another plan.  :)

We both cried yesterday.  Of the few things I've seen bring the Mr. to tears, one of them is losing a pet.  A new normal.  Do you know how tempting it is to get a puppy?  But that's not a good idea.  When I retire, we want to travel a little.  Take a nice long vacation first of all, and go down to Panama City where the MIL lives and stay a whole week or longer if we want.  No pets to kennel or beg somebody to care for while we're gone.  It just makes life easier now.  In that respect.

Secretly, though.  In the letter I have left for his sister and her husband, I've requested that they get him a puppy when I'm gone.  He loves animals, and I thought it would give him a reason to go on, something to care for and love, I figure it will be therapeutic for him.  Won't he be surprised!!!  I thought I'd even include a card for him.  :)  From me to you by way of their hands.  I think its a great idea. :) 

A new normal.  I could get us a gold fish!  :)  We've had those too.  Well it actually belonged to son #1, he won it at the school carnival.  And then I accidentally killed it.  It was an accident!  I was spraying a baking sheet with non-stick spray to make cookies, then realized the fish bowl was in the line of fire.  and I thought "oh shit.  That can't be good."  I looked over into the bowl and there was a thin film of oil on the water.  I went to find another suitable bowl to put him in and by the time I got back, 5 minutes tops, he was a floater.  just that quick.  So I made the Mr. run to the pet store and get another one.  I don't think the kiddo ever figured it out.  anyway -

Its Friday - yay!  I get to sleep in tomorrow.  Yay!  And I'm having lunch with 2 of my best friend-girls, Yay!  So ya'll have a good weekend.  Until next time,


Thursday, August 3, 2017

Another Sweet Creature Lands On The Rainbow Bridge

I  had to put my last dog down this morning.  She was actually my mom's dog, I inherited her when mom passed 3 years ago.  Nearly 15 years of love and companionship she gave to us all, a mini-dauchshound she was.  Rest in peace now Tink.  And give Happy a big hug for me when you get to the bridge.  Sweet dreams baby girl, I'll see you again.

Thursday, July 27, 2017

RA Lung - Deadly

If you take Methotrexate then please be proactive and get a chest xray at least once a year.  RA-ILD is NOT rare, its just very underreported.  Heart and lung issues are #1 and #2 killer of people with RA.  Please insist on an xray, what can it hurt?

Wednesday, July 26, 2017

Do you ever look forward in anticipation of a Dr. appointment?

I do.  Sometimes.

Ever since Dr. G said the words "it may be your esophagus..." it makes more and more sense.  Could this be why some days (like today) I wake up nauseous?  Rarely to the point of actually vomiting, but it happens sometimes.  But 4 days out of 7, I wake up sick at my tummy.  This has been going on for months.  And months.  My tummy had issues before the Great-3-Week-Crud-of-2016 in December, but ever since then, its worse.  Not only that.....

But for the last 3 years or so, at least, sometimes if I'm not careful and don't chew my food to the consistency of baby food, when I swallow it feels like I'm swallowing razor blades.  Its put me on my knees before, doubled over in tears until it subsides in a minute or two.  And the pain is right at the top of my tummy where the food drops into it from the esophagus. 

I've noticed in the last month or so, if I'm not careful just swallowing my own spit, I will choke on it.  Choke on my own spit.  Sometimes liquids feel like planks going down.

The IBS.  With D.  And N, and as I said occationally a V. 

Ready to get this upper GI done and lets see what the hell is going on un my tummy and throat and hopefully.....fix it.  If possible.

I haven't lost my appetite.  I still get hungry and thirsty.  I just have to be selective sometimes what I choose and when.  I've not run any fever in a couple of months now.  That's good.  That's a good sign.  I just want some relief from this monster that sits out in front of me!!!!

And I fell again.  No real damage this time, thank God.  I think I got a little carpet burn on my elbow and my left leg, but that's about it.  But still.  Two falls in less than 3 weeks.  Is this a new trend?  My gravity is off center with this ginormous belly sticking out in front of me, that Dr Eye is sure is fluid.

Anyway- Not a real feel good day.  I'm hoping it improves as the day goes on, it does sometimes.

Ta ta for now.

Tuesday, July 25, 2017

RA - Lung Take Two

Ok where was I....oh yeah.  I was going to talk about what the doctor said at the walk-in when I went for an xray, but looking back, I see I already told you about that.  What I didn't say was that Young-Doctor asked if I would give him permission to review my test results from the week before when I was in hospital.  I said sure why not.  Another set of eyes never hurts.  This was on Monday, week ago yesterday.  So on Wednesday, two days later, I get this phone call from them saying they had set me  up for a CT the next day.  "What for?"  She, the nurse, said that the doctor wanted one done so he could compare.  I told her, seeing how I just had an HRCT 8 days previous, unless I have some sort of flesh-eating disease, I highly doubt there are going to be many changes for him to see.  My doctors are on top of this.  All I wanted was an xray, and that's what I got, thanks.  I don't see the need to go through the expense, I doubt my insurance would pay for another one that quick.  Especially when the last one was an "HRCT" not just a measly old "CT".  No.  I called the hospital and canceled.  They were kind of put out.  Sorry, about that.  I'm not putting myself through the expense nor the procedure just so some doctor who is not on my care-team to have a looky loo at something he's never seen before, probably.

Anywho-  so umm yeah, I'm coming  up on two years now since ILD diagnosis.  I remember that day...."2 1/2 to 4 years depending....."  In my own, medically-uneducated-opinion, gauging it by comparison of how I feel today, to how I felt just a year ago, I think I got another year in me.  Maybe.  We all know this could change on a dime, in a moment.  I know I can feel great right now, and 10 minutes from now, feel like I got run over.  There's no rhyme or reason to this, and it is so unpredictable, what's the point in trying.  That all being said, if I can stabilize now that the clots are gone, and just stay where I am right now, I can make it a while.  I still have hope.  Its when I sneeze, or cough, or take a deep breath, that I'm reminded that my lungs are turning to stone.  When I eat, even the smallest meal, I'm reminded.   Eating is not the pleasant experience it used to be.  My belly is so big, it is pushing up into my lungs, even when its empty.  When I saw Dr. Eye, my rheumy, last week, that's the first thing she noticed....

Dr. E - Wow! (pointing at my belly)

Me - I know!!!  I feel like an alien!  (And she begins gently pushing on it)  I really think I have a hernia sometimes.

Dr E - No I don't think so (now she's examining my legs), this is fluid.  There's some fat too, but mostly this is fluid.

Me - Its bigger at night by the time I go to bed.  I bloat during the day.  When I get up in the morning, my belly is almost normal, almost.  And my legs, are 1/2 the size they are by now, when I get up.

Dr. E - mmmm....yep.  This is fluid.  And its all due to the prednisone.

Fluid meds, out of the question.  I already battle leg, hand, and foot cramps at night due to the prednisone, and that's WITH potassium supplements.  Diuretics are known for depleting potassium and cause leg cramps.  I'd never be able to sleep.

I look deformed with this huge belly, little bird legs, normal arms, and a prednisone moon-face.  I've often wondered how many times people look at me and wonder "she's a little old to be having a baby!"  ah is what it is.  I used to be cute, I have pictures and witnesses to prove it.

But as for the lungs, I lost a ton of ground with the PE.  I'd love to go back to where I was before that, but I know that will never be.  Sometimes it crosses my mind before I go to sleep at night, maybe tonight is the night.  Maybe I won't wake up this time.  Well, I'm ready when He's ready.  He and I are ok, we're tight.  I've got a couple of pets on the rainbow bridge waiting for me to cross, and I've got my loving grandmother and my mom waiting for me.  Its going to be ok, even if its not ok.
And there are the RA eyes.  They run like a poodle.

In other news

Did I tell you the Mr. was cutting the grass, the mower threw a rock and busted out my back window in my car?  That happened two weeks ago, the day I got out of the hospital.  Anyway - got it to the glass replacement place today, took a little bit to scrape up the money ($220).  I only have liability coverage since the car is paid for, so its all on me.  So I got it to the shop today, I've been driving the truck ( I call it the tractor), and on the way back to work (The Mr. drove it to the shop and I picked him up), I get a call from them saying that the window had arrived.  However, bad news, the box has the right part number on it, but the wrong glass in the box.  There was some mix up at the warehouse, or distributor or where ever they order them from.  So its going to be tomorrow before she's ready.  sigh.  well, anyway.  it is what it is.  I'm just glad to be getting it back.  Seems like every 9 months or so, something happens and I'm bumming rides. 

Well, lunch break is over.  Time to get back to work.  Ya'll be sweet.


PS...I just stumbled on another really good "Chronic Blog" .   Ya'll hop on over there and give her a look.  Chronic Mom

Wednesday, July 19, 2017

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

Updated - I came back because I thought it important to mention the fact that when my ILD was diagnosed, my rheumy immediately took me off the methotrexate.   " scars the lungs over the long haul...".  The RA does a number on them in and of itself, and the mtx just makes it worse.  Damned if we do....damned if we don't.  Did mtx cause my RA-Lung?  Combined with what the RA does to them, yes.  Yes, the mtx helped my symptoms, I noticed a difference in my pain level when I stopped it.  But had I been told that mtx scars the lungs, I'd have never taken it.  If you are reading this and you are on methotrexate, please insist on a chest xray every year.  Even if your doctor says its not necessary.  Believe me, it IS necessary if you have RA and you take mtx. 

Back to our regularly scheduled program:

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.

Friday, June 30, 2017

A Good Friday Laugh

These are the kinds of people that come to mind when I think about how most don't really appreciate life, not like those of us who fight for our life every day.  Vanity is ugly people.  Apparently this girl must be a trust fund baby to have the time to make as many stupid video's as she has.  Like the ones where she discusses her monthly issues, and apparently lots and lots of people "wanna know", look at how many hits she gets.  But anyway...what a dumbed-down world we live in when this is what entertains us.  But then I am an old

I don't follow her (LOL Like I would), just every now and then youtube will "suggest" one of her vids, I don't know why, and this one popped up today.  I nearly fell out of my chair laughing.  Now, I know its been a couple of decades since I was all young and hot, but have girls *really* fallen this far down the vanity rabbit hole?  I dunno.  You decide.  Warning:  Watching this video may kill brain cells.

I give you......Toilet Paper Lips

ROFL!!!!  Hey, if you're going to put it out there, you gotta expect some feed back.

ya'll go have a good weekend.

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. 

Monday, June 26, 2017

Nothing New To Proclaim And That's A Good Thing

Now that I've adjusted the prednisone again (I'm now taking it every 10 hours instead of 10 1/2, that seems to be the sweet spot, as long as I remember that is, that's a huge part of the problem....I forget), the fever is leaving me alone.  On Saturday, I was supposed to take it at 1:30pm.  At 3:30 I was sitting in my chair, and suddenly (and I do mean suddenly), I felt like I'd been run over and I thought, "ohmygosh! why do I feel so bad.........oh."  I looked at the clock and realized I was 2 hours late on the pred.  It took a full hour to kick in.  I'm researching little timer options. 
I don't wear a watch, never have, ever.  I know that's weird, most people do.  But I don't.  I've never been much of a "jewelry" type girl.  I always loved, and still do, a pretty pair of earrings, especially nice hoops.  I wore sterling silver hoops for decades.  I haven't even worn a wedding ring in probably 25 years or longer.  So getting one of those fancy things people wear these days on their wrist, not happening.  To me, wearing anything on my wrist makes me feel the same way some feel about wearing turtle-neck sweaters.  It bothers me, and I find myself pulling on it constantly.  So, I'm open for any suggestions.  Some have said, set my phone, and that is actually a viable option.  But I don't always have my phone with me.  I guess I'd have to make allowances for that.  But anyway, I'm researching and looking around for some type of "reminder" buzzer/ringer/knock on the head whatever it takes so I don't forget.
Moving the rest of my belongings out of the office today.  Making room for the new girl coming in.  Of course, we already hit a snag.  The guy in personnel didn't do his part of the paper work, so we're already late.  I was hoping they'd make the offer today (it has to be all "official" and sh*t), but it looks like that might not happen until later in the week.  No worries.  None of this has gone off without hitches so far.
Felling ok today.  DID NOT want to come in this morning.  Its getting harder and harder, to do this.  But soon enough....soon enough.
And!!! On a happy note, by next week, I should have some good news to share with the world.  Some really really good news.  Something that will change my life again, it directly effects me, but in a good way.  So there's a bone, now you'll have to wait! 
So lets go "do" Monday.  Lets have a good week!

Thursday, June 22, 2017

This Isn't Funny Anymore - or - I've Lost My Mojo - UPDATED

Kind of depressed today.  I guess getting up 5 times in the night to go pee, means I've not slept well.  Woke to a bout of nausea, that blessfully didn't last long.

I don't really have morning stiffness anymore, not much.  You've heard me say that once the organs became involved, its almost like its in a mini-remission everywhere else.  One thing, no two actually, but one thing that lingers is the morning "blah".  That first hour or two when I wake up and think, "I can't do this today.  How will I get through the whole day?  shut up and get up and get in the shower, move it!"  The other is fatigue.  Mind-numbing fatigue.  You know what I speak of.  Generally, after a couple hours, and I've had a hot shower (which wipes me out, and it takes forever to get dressed afterwards), I begin to feel more myself.  Ok, yeah, I can do this.  Again.  For a few hours.  But no promises!

I'm at my peak between the hours of 10:00am and 3:00pm.  Before and after that, I'm pretty useless. 
I don't speak of it very much, because this blog is about my journey with this disease.  But most everybody knows I crochet and I knit.  I learned to crochet as a kid when I was about 11 years old, in 1978.  I didn't learn to knit until about 5 years ago I guess now, and I taught myself from youtube video's.  Down through the years I've hooked many many afghans.  Now, with all these new lovely hand dyed yarns that, back in the 70's, where not available to us, I've even ventured out and made some clothing.  Seriously, ya'll remember all those hideous acrylic crochet flower-power vest in the 60's and 70's?  YUK!  But its true to say, even acrylic has come a very long way, and the quality and large range of dyers we have to choose from, has made it such a pleasure.  I love that I can do this. 

Because now, it has kept me sane, in a world that sometimes seems against me.  And I have to confess, I've lost my craft mojo.  I barely pick up a hook, or needles these days.  You may remember I mentioned that back in the winter, I spent some of my bonus on a new recliner to sleep in.  I moved into my yarn room, so every night I sleep surrounded by yarn, and crochet/knitting notions.  I have a massive pattern book collection (several hundred I'd guess), some are several years worth in subscriptions, some I've bought as stand alones, and I even have a copy of each of Doris Chan's books that are now out of print.  And as I was getting dressed this morning, I looked all around me and thought "there is NO way I will work my way through all this yarn before I go." 

See, the plan has been to just start making blankets.  Grab a random ball, make it a giganto granny square, or some other easy pattern, when that ball runs out, grab another, and just keep making them till I run out.  I have a stash of "the good stuff", and I've got a couple of beautiful shawls on the hook and needles to use that.  I don't use "good stuff" for afghans that are going to get some serious use.  Ok, point being, I think its time to face reality, and begin a search to see if maybe I can donate some of it.  My pattern stash alone, all total, I'd say has probably cost me in the area of several thousand dollars.  I had thought I might open an Etsy shop when I'm retired and sell them.  But I'm beginning to think that's probably not going to happen.  That makes me sad.  I just don't think I'll have the where-with-all to run it, all those trips to the post office.  I dunno.  I have several that are no longer in print.  One of Doris Chan's, the hard cover edition has been listed on amazon for over a thousand dollars!!!  and I have that one!  Its not hard cover, but still.  out of print is out of print.

I have to make a new plan, I guess.  One more thing.  But I sit in there at night and think "I really need to work on this, or I really need to finish that..."  And I don't.  I'm so tired by the time I get home, that all I really want to do is drink a fruit smoothie, do our daily bible study, then loose myself in Netflix or on youtube (I've been binge watching The Tudors.....again:) , I've lost my craft mojo.

Maybe a trip to the LYS (the local yarn store) and just get a little something like a new needle I don't have.  Maybe that will re-start my engine.  I wish they would hurry up and process me.  I'm ready to be at home permanently. 

Well anyway - I'm having dinner tonight with two friend-girls, if the weather permits.  We have a tropical storm "Cindy" blowing through the area today and tomorrow.  We're meeting at The Gumbo Pot.  I don't like gumbo, but I hear their fried shrimp po-boy's are to-die for.  So that's what I'll be having.  I don't like Cajun food much at all.  But I do love a good shrimp creole over rice, New Orleans style.  I like shrimp any way you make it (some people call them prawns I think).  Now I'm  hungry.

Have an appointment with the throat doctor this afternoon, getting my tube looked at, see if we can figure out why swallowing is so difficult sometimes, even liquids get stuck now and then.  Yes, I've done some Googling and I've researched a couple things, but I no longer try to guess this thing, because the last couple times it has surprised me.  So we'll see.

Be sweet.

Later that morning.....
Dr. G's nurse just called to check on me.  I **heart** you Dr. G!!  You are the kindest, most caring doctor I've ever had, even though I still think you've hid some things from me.  But I forgive!  And I wouldn't go anywhere else!
Even later that same day:
My replacement has been selected!!!!!!    Yipeeeeee!!!  One more step in the process.  Now, the next thing is to get a fire lit under the home office on my paperwork.