Blog Archives

Got that mammogram out of the way

Nothing like having to pay to have someone painfully squash your boobies between two plates, top to bottom and then side to side. Yes, pay for it. I have a co-pay.

Well at least I do for now.

If the Republicans/religious nut cases have their way, I probably won’t be able to afford another one.

You know, all that pre-existing condition crap they’re so eager to impose on us.

My baby sister Mary, born 11/7/1957

Diagnosed in 1989 with breast cancer

Two mastectomies, many chemos, radiation treatments, and two bone marrow transplants.

Died of metastatic breast to bone cancer 4/13/2001

Mary a

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MRI and then what?

So later today I take The Curmudgeon for another MRI. I hate taking him for them because I am stuck sitting in a hospital waiting area with a bunch of sick people.

Even though I don’t touch the arm rests on the chairs or any of the magazines (I bring my Kindle) and I wash my hands as soon as I get home. I usually come down with some sort of creeping crud.

I think they should supply healthy people with masks and gloves so we don’t catch whatever is floating around.

Color me green and unhappy about being there.

Kermit face

And again!

 

     I retrieved the mail from the mailbox yesterday afternoon and found a bill from the nursing home.  They sent us a bill for $912.00.  What?!  Yes, they are attempting to double-bill us for the last six days of my MIL’s life.  The life that their negligent (lack of) care ended. 

     I sputtered, I ranted, and I raved.  Once I calmed down, I went over there.  I was loaded for bear and made a lovely scene in front of patients and visitors alike.  I don’t care.  I don’t care how much I raise my voice, I don’t care who hears.  I demanded they call their superiors and wreck their day as they had wrecked mine.  Not one of those so called ‘skilled nurses’ was brave enough to do it.

     That’s okay because I made my point.  I will make my point again on Monday, Tuesday, Wednesday…you get the idea.  I hope they are ready for a picket sign, bad publicity, and any number of things I can think of that might keep other people from placing a patient there.  I have all the free time in the world.  Who knows, after the conference, I may just camp out in their parking lot.

     I have the email address for the CEO of the parent company along with his staff’s email addresses.  They will get sick of hearing from me.  I also have the name of a great attorney who really loves to go after places like this. 

It was not a good day yesterday

 

     DH and I went over to the nursing home for their “care conference” and, once again, they had the “conference” in her multi-patient room.  At least this time they were ready for us because I made a rather loud remark at the check-in desk about how they screwed up last time.  As we walked to the elevator, we heard the receptionist page them to the phone.  It was amazing to find three staff members hovering over Mom when we came into the room as if they’d been waiting for us.  I might have believed it if we weren’t early and if two of them weren’t a bit winded.

     They hate it when I come in with DH.  I pull out my notebook, “Before we start I want your names.”  Then I make a point of checking my watch and putting the date and time in my notebook before they speak.  All the while they are talking I take notes.  It drives them crazy and keeps me happy and sane to do this to them.

     It’s rough on DH and brings me to tears.  Mom is not there mentally and these past few weeks she’s gone rapidly down hill physically.  They finally have the DNR on her chart.  We feel that as far-gone as she is, it isn’t fair to her to have them prolong her agony.  (I swear I am going to have ‘DNR’ tattooed on my chest!)  

Make it quick for me

 

     This afternoon we are going to what we angrily call a ‘no care conference’ at the nursing home. They had us come to one of their “care conferences” last month and it was pure BS with a topping of crap. (Yes, those are air quotes, people.)

     It seems to me that if they want to present a professional front that they’d actually hold these “care conferences” in an office. Oh, hell no. Last time, even after confirming the appointment with us TWICE, they “forgot” we were coming in. Then they had us stand in the middle of a four patient room and gave us a trough of horse crap about nothing to do with the MIL’s care. (OMG and this place has a US Government ranking of three and a half stars higher than the one my Mother was in!)

     If the day comes, that I am mindless and dying a slow death, I hope that one of my friends will have the kindness to push me in front of a speeding bus or put a bullet through my brain. I want a quick death not a lingering one.

If life gives you melons, you may be dyslexic.

 

     With everything slamming down upon us all at once, the holidays, memories of family deaths in Novembers and Decembers past, and DH’s mother so ill it’s not easy to make lemonade. 

     However, we do try.  Yesterday we were lucky to have sun and reasonable temperatures for this time of year.  I had some time to play with the dogs and DH even joined in a bit.  I cooked DH one of his favorite dinners, oven fried chicken and fragrant rice.  We even had fresh papaya for dessert.

     They moved his mother from the hospital back to the nursing home in the afternoon.  We aren’t certain that it was wise but we’ll see how it goes.  DH feels that disagreeing with the doctors doesn’t help her.  However, if they screw up they will have to deal with me and not DH.  He’s too easygoing.

     The nursing home remembers our last run in and I have no doubt that’s why they quickly sent my MIL to the hospital this time.  They don’t want me to come in loaded for bear again.

No NaNoWriMo for me

 

     It’s a rainy day, the perfect time to sit down and write, or so you would think.  Nope.  If it isn’t one thing it’s another keeping me away from my books.  Heaven’s, I’m glad I didn’t enter the NaNoWriMo I’d never make it close to the word count. 

     I think about entering every year.  However, thinking isn’t doing.  Maybe one of these years I’ll do it.  I don’t think it will happen until things around here begin to go smoothly for a change and what a great change that would be.

     The MIL is out of the nursing home and back in the hospital—has been for several days.  Her elderly dog died the other day and we aren’t planning to tell her that any time soon since she’s non compos mentis now.  All that would do is confuse her more.

     DH is over tired and over stressed, meanwhile, I’m doing my best to keep his spirits up, and giving him a chance to rest and relax when he’s home.  Even the pups are being good, miracle of miracles.

His mother may be leaving us soon

 

     DH’s mother is not doing well.  She spent a few days in the nursing home only to be sent to another hospital the other night.  The nursing home didn’t call us to let us know but, thank goodness, the hospital did.

     She didn’t know DH when he went to see her yesterday.  However, she did eat a little bit of her lunch for him. 

     I ache seeing him hurting like this.  All I can do for him is offer the same comfort he’s given me so often in the past. 

     It’s sad when our parents leave us.  I’m so glad I told my mother I loved her whenever I spoke to her.  I’m glad that although he couldn’t speak, I knew that my father knew me, his eyes lit up and he squeezed my hand when I said, “I love you, Pop.”  I was the only one of his daughters that ever got away with calling him Pop.

DH is getting the Ampyra!

 

     At least three letters, the neurologist’s intervention, and dozens of phone calls and faxes later, DH will get his Ampyra.  What a total cluster f*** that was.  Now, if it works, and he walks better he will be over the moon.

     However, they only approved his meds for six months.  I’m betting we’ll have to go through the whole dance routine again when that rolls around.  Oh, what fun that will be…NOT!  I can’t understand the whole process.  They make you jump through enough hoops to qualify as a circus act and then they have the nerve to tell you yeah, you can have it, but only for six months.

     Why?  His condition isn’t going to change except maybe for the better and yet you want to toss him in the trash in six months?  This sort of thing sucks. 

     From the looks of it, even if there are sweeping changes in our health care system, there will always be someone denied the proper care or medications. 

It’s a racket I tell ya.

 

     Their stock is up.  Their profits are way up.  They are making money hand over fist.  I can tell you the why of it too.  They now cover fewer drugs, they routinely deny drugs to patients, and they raised the co-pay at least 15%.  Can’t help but make a profit when you gouge more and spend less.

     The Chairman and CEO, age 55, makes a whopping $1,300,000 yearly salary.  I’m betting that if he needs a drug for some illness, he doesn’t have to worry about how to pay for it.  The President and COO, Age 56, makes a tidy $810,872 a year.  He doesn’t worry either.  The SVP Finance and CFO, Age 52, makes $548,560 a year, another one who has no worries about where he’d find the money to pay for a prescription.

     Yowza, if we had that sort of money coming in each year we wouldn’t worry either.  Ampyra is a new drug.  It is a costly drug.  Why would they want to nick their profit margin a bit?  They live well.  They have no worries.  Why bother helping out the little guy?

     DH’s neurologists want him on Ampyra.  It’s a quality of life thing.  DH struggles to walk every day.  Some days he walks better than other days.  However, now it is summer and the heat (especially the record-breaking heat we’re having) makes him worse.  Guaranteed, if Mr. Chairman and CEO with the $1,300,000 yearly salary had the same problem, he’d get Ampyra tomorrow.

Ampyra approved then taken away

 

     Well this sucks big time.  We were told by a certain health plan that DH was approved for Ampyra and today we got a letter from the same people telling us that he is not approved.  You know what, I hate making phone calls.  In spite of this, someone has some ‘splaining to do.

     Phones are going to be ringing and when I’m finished, I’m betting a few ears will be too.  Angry doesn’t describe how I feel right now.  I won’t tolerate this sort of treatment.  I will fight tooth and nail for DH.  No one EVER pulls the rug out from under my loved ones like that.  I don’t care whom it is I have to run to ground I will get results.

     DH has always said, “Don’t get the Irish Indian mad she will go on the warpath.” 

     I am past mad and well down the road to infuriated.  If I have to go all the way to the top of the company, I will do that.  I can make waves, big ones.  I am a writer.

Ampyra formerly known as Fampridine

 

     Ampyra was FDA approved back in January.  Today the neurologist’s physician assistant talked to DH about putting him on Ampyra.  Funny, when I mentioned to his neurologist the last time I was along, he didn’t seem to know WTF I was talking about then.  To me this means I’m probably one-step ahead of him.

     DH is the love of my life, my soul mate.  Do you think I don’t try to keep on top of everything out there for MS?  I do daily research.  I read articles on MS treatments from all over the world.  I keep track of the progress of clinical trials and any new drugs that show promise. 

     They list 14 of ‘the most common side effects’ of Ampyra.  Yes, a few of them are scary but then his secondary progressive MS is overwhelmingly terrifying.  To DH it’s a case of choosing between struggling to walk and improved walking.  He wants to walk.

     He isn’t taking it yet.  They are checking to see if his drug plan covers it or not before prescribing it.  Knowing his drug plan, he’ll probably have to fight for it.