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.