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.

Wednesday, November 8, 2017

Its Been A while - Running out of time - and a receipe

I kind of lost my blog mo-jo.  And there's been a lot going on.  Still no word yet on my early retirement disability.  Looks like I'm going to have to get more higher-powers involved.  Folks with lots of bars and stars. 

I saw Dr. G two weeks ago.  :(  He said the diminished air flow is now at shoulder-blade level on the right lung, and about 1/2 up in the left lung.  I'm running out of time.

The IBS has been flaring for a few days.  Yes, we've determined all the morning sick (and any other time of day too), the intense pain before going to the bathroom, the belly cramps....its all IBS.  Maybe I already talked about that in the past.  I can't remember, and I'm too lazy too look back.  I just know its misery.

This morning I was googling it, and found a list of "trigger foods".  What??  Trigger food?  ....wonder why I don't already know that..... but anyway, one of the "trigger foods" on this list is cabbage.  Now, if ya'll haven't figured it out yet, I'm a good old fashioned southern girl, born and raised and damn proud of it (I lived in Massachusetts for two years when I was in the military.  Its a whole nuther world up there, and that's putting it mildly).  And as such, it is almost required that you like cabbage.  Like corn bread (and don't be fooled ok?  That yukky bleh dried-out yellow sweet-cake some people call "corn bread", is NOT corn bread.  Cake is sweet.  Authentic corn bread is not.  I asked my mom one time why she didn't put sugar in her corn bread.  She looked at me like I was a heretic.  I thought she was going to smack me. I'm just sayin).  So Sunday night, I chopped up and fried in bacon fat (another requirement) an entire head of cabbage, and made corn bread to go with it.  OHMYGOSH!  By Monday morning around 4:30, the pain woke me up, and I had to make a quick dash to the toilet.  By the end of the day Monday, I'd made 6 visits to the ladies room, 3 rolls of paper, and cramps to the point that I am sore today.  I gotta give up the cabbage.  sigh. 

Authentic Southern Style Corn Bread (As my momma taught me, and her momma taught her...and I've never had a complaint yet)

A well seasoned, black, cast-iron skillet (sorry, its just not the same in anything else.  It is what it is)
2-parts white self-rising cornmeal  (the "part" size for my size skillet is about 2 cups)
1-part self rising flour  ( I use Martha White for both)
1 egg
a touch of salt and pepper (not too much)
1/4 cup vegetable oil (or bacon fat if you have some, that's best for flavor)
Enough buttermilk to make your batter cake-batter-consistency.  Not too thick, but not too runny.  You *can* use plain whole milk, I do it in a pinch.  And its just as good, although the buttermilk does taste better.  Just don't use 1%, or 2% or that blue stuff they call "skim milk" , or soy milk, bleh!  Your cornbread will not taste as good, use real milk or buttermilk.  Preferably buttermilk.  I'm just sayin.

Pre-heat the oven to 350 degrees F.

Mix everything together except the milk, in a mixing bowl.  You don't have to worry about all that "dry-mix-then-wet-mix" malarkey.  I never bothered with it, neither did my mom, and the proof is in the results.  Just throw everything thing in a mixing bowl including the egg.
Then add in about a cup of milk (I eye-ball it) and mix.  Keep adding dabs of milk until you have it like cake batter.  Stir it up good.

After this, heat your skillet on the stove with about 1/3 cup of oil or bacon fat.  Sprinkle in some corn meal, this makes a nice crust.  Just let the oil get nice and hot, but not smoking.  Pour your batter into the hot skillet, shove it in the hot oven.  Note the time.  Wait 30 minutes, and take it out.  It should be a nice golden color.  Turn it out onto a plate.  The "up-side" should be golden brownish. 
mmmmmmm....mmmmmm Delicious! 

Ya'll be sweet.

Friday, September 29, 2017

Prednisone Cost Me a Friend

Sort of.  **sigh**

I have a friend (or she was anyway) who is a really nice girl.  A few years younger than me, but we have a lot in common, we work just down the hall from each other.  Anyway -

Ya'll know prednisone broke my patience, and my speech filter only runs on two wheels.  Well, bless her heart, she's a "fixer".  And I've been told by another friend "its just the mother in her".  Well, I'm a mother too, and I don't try to "fix" people.  And she fires off suggestions to me like an automatic weapon, that's when the prednisone kicks in and I loose patience and then I get short with her.  It wouldn't be a problem except that I didn't ask for suggestions.  Most times I'm just needing somebody to talk to.

She and I and two other friend-girls were having lunch the other day, and I was talking about a personal problem I've been dealing with lately at home.  She immediately launched into the laundry list of things "well, you need to......did you think really need to think about this....." and on and on.  I finally lost patience and I snapped at her.  I just always walk away from her feeling like I just got "schooled" and she talks to me like I'm one of her kids.  I know she doesn't mean it, but I'm on prednisone for Heavens Sake!!  I can barely control it!  And she kept saying "just hear me out...."  well what's the point of "hearing you out" when I didn't ask for suggestions on how to fix it, I just needed an ear, and I'm not going to do what you've suggested because I can't.  So anyway - This is someone I've been eating lunch with practically every day for almost a year.  She hasn't spoken to me since this happened.  I went down there yesterday to her cube and tried to make nice.  And she was nice, but distant.  Ok.  Well, you know.  I got through life without your friendship for decades, and I have other friends.  God bless Pam!  She's not pushy, lets me talk then hugs me, then says "I'm here if you need me ok?"  How hard is that????

I can't help but think that without the prednisone, I'd have just grinned at her, hugged her and said "thanks" then went on about my business.  It is what it is.

Haven't felt good in so long.

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!