[My] Life in Wisconsin

Casey's Liver. (And a little about me).

Another collective rant...

Good Morning all;
I have been away again, so you best grab a cup of coffee. hehehe


First- most importantly, Casey is OK-
** If you missed the update in my comments section in my previous blog,  we still do not have a definitive diagnosis- We do know that the CAT Scan showed more than a few 'growths' on her liver.

Once admitted, Casey was sent to the oncology floor. 


The hospital employs "hospitalists". 
Medicinenet.com defines a hospitalist as "the physician that organizes the communication between different doctors caring for a patient, and to serve as the point of contact for other doctors and nurses for questions, updates, and delineating a comprehensive plan of care. They are able to track test results and order necessary follow-up tests promptly.

One thing this hospitalist mentioned, beside the bad stuff, was "fatty liver"
This is what I read up on and learned:
  • "occurring in people who are overweight or obese"
  • "Only a liver biopsy can establish a definite diagnosis and determine the severity of the condition."
This hospitalist dude ordered an ultrasound...
Casey questioned WHY they would do an ultrasound when this had already been confirmed by the scan? (A very good question too).
She also questioned WHY it took over 14 hours to schedule an ultrasound that takes about 5 minutes? (Another great question).

As I told you, Casey did leave the hospital. 
"A-M-A", (against medical advice), late that same afternoon when this hospitalist doctor there told her that he would NOT work with Minnesota on her case.  

WTF?!

NOT working with the doctors who are familiar with her medical history??? 
NOT even taking 5 effing minutes to ask them for pertinent information (that he might well "need" to know)? 
Not to mention that he would NOT even contact them!

He flat out told her, "I'm a doctor. I will not call anyone else. It is my own policy not to confer with anyone else."

The pompous bastard apparently forgot who works for whom! 
How dare he?!?

Casey shot back, "You are just a hospitalist. You are not my doctor. I am leaving, and I will drive to Minnesota if I have to."

With that, he was completely irate! She did not mean to anger him further- But like any one else on earth, and in almost any given situation, people respond IN KIND.
Casey is no different!
_________________________________


As for me, there is a whole slew of crap going on.
In May I had an eye exam...

When he did the cursory peek he told me that I have some cataracts...
They were nothing for me to worry about; (maybe in 10 years or so).
THEN, he did the eye exam itself.
OK, they were worse than he'd originally thought- (Perhaps I had more like 5 years).
He then thought to put me in front of a machine that actually takes a picture of the inside of your eye. I have forgotten what it is called, but it was VERY bright.
Afterward, he stared at the 'picture' then then spoke again. "Anne, I am going to prescribe you some new glasses for now. They should help you to see a little better. Let me know in a few months if you still cannot see any better. Your cataracts are much more advanced than I had originally seen."

Damn! How did I go from having 1o years to see decent, to having just a few months? (And that, only *if* the new glasses did the trick)...

But they did! And for the rest of May, and the month of June- 
But then I woke up one day, and it was July...
Lord almighty, when he's right he's right. 

As of now, I can barely see the printed page, let alone to type. If you are not making your blogs bigger then I have an awful problem reading them. I check pictures (that won't enlarge), with a magnifying glass.

I wish I could talk to my computer and it would type everything I say; -cusswords and all. hehehe

With my elbows and shoulders hurting so badly I can barely type. (I have been writing this, on and off, since about 8 this morning). My fingers sort of do not cooperate with my brain, which is still mostly working.
I make all of my screens extra larg- Sometimes I read faster than I can scroll. hehehe  
Hey, it works; but my eyes tire so quickly.

Or maybe that's just me?!?
For the last 3 nights I have barely slept a wink. More like extended naps. (About 2 hours each night). I do nap sometimes during the day, but am not real good at that. But I enjoy the heck out of shutting my eyes and trying to hypnotize myself to sleep/nap. 
Don't laugh! It's fun; and mostly it works. (Just not for the past 3 nights).  hehehe

Hell, I should probably post a whole bunch of things I can do because the list my own doctors tell me not to do keeps on growing and growing. And I am more than tired of it all.

Someone asked me a while back how did I manage to keep going and not throw in the towel and say 'adios'.
I'm not really sure- Just that maybe I don't have that gene, or whatever. 
Besides, I'm as gutless as all get-out. hehehe
Not sure if I would ever be able to do that to Casey-(or Punk for that matter).
Might be a different story if I was worse.

Oh wait.
I had to be tested for a few things- Autoimmune disorders, and an h~Pylori test to see if my ulcer came back. I have been asking for 6+ years to have this test (re)done, and doctors have refused.
They want to do an EGD. 
Finally, tired of all the nastier symptoms, I sort of demanded the test. She was upset and said I still had to have an EGD.
"No. Not yet. Let's see when my h~Pylori, comes back. If it is negative, I will talk about having this EGD done. If it is positive then I will need to be treated for that first; and see if my symptoms go away."
(She too, had almost forgotten that she works for me; and not the other way around).

Please do not misunderstand.  I honestly DO admire and respect (most) doctors and nurses... until they give me a reason not to anyway.
Having had Casey sick now for almost 8 years, it still throws me to see people (drs, nurses, ANYone) treating her like a dumb sockpuppet. We have had such an extensive education. And no, I am not even remotely comparing myself to a dr.  It's just that when things are done out of order, I reserve my INFORMED right to question it. 
In this specific case, and instead of eliminating the symptoms in a fairly cost effective way, they want to jump to the very expense (and invasive) things... Makes no sense to me.
They wonder why my blood pressure is whacked???  (Really)???

When all was said and done my h~Pylori test came back positive.  Shocker, no?
***sigh***

The autoimmune test results came back too
2 were plainly negative, and 2 came back highly "suspect" (questionable). 

Again I must ask myself if these are things I wish to worry over, or if these are things I can live happily on the side of basic ignorance. 
Remember that our bodies are quite well~functioning machines (for the most part).
Aside from pancreatitis, major coronaries, cancer, and bacterial infections (to name a few) our bodies can/DO heal themselves well. One only needs to take care- And always MAKE time for ones-self. That is the ultimate thing.  Guilty as charged, it is also what I failed to do, for too many years. 
I will not make that mistake again.

It's actually a very simple, and basic, concept- If you are thinking you need a break, you DO! Pull over from life for a while, smile, then relax for at least 20 minutes.  Eyes closed and add earplugs if at all possible); no thoughts, (only quiet and comforting ones), and no other minor responsibilities. That time, that responsibility is ONLY for yourself.
If you don't take care of you then who will?

Besides, you do NOT want to end up like me- In a body that had been neglected for 3 decades.  I tried not to be selfish too- It didn't do me any good.  And I don't mean that manicures are more important than meals. It's OK to relax. Really.
There is a reason for everything- And I didn't listen to my back; blaming it on my arthritis. When I was 35 my doctor wanted me o have a scan of my back. I wonder now what may have been revealed? Then again, I didn't listen to that nag on my shoulder that kept telling me to go IN. 
I do have a few other things going on- None so important as my vision though. I know already that I will need the cataract surgeries- and picture myself with a patch on my eye, a brace on my back, and a broken front tooth. I will be ready for Halloween, that's for sure. 
I broke that one about a month or so ago. Went in to the dentist- and he needs to refer me out, as I need more work than they are capable of doing at the clinic. 
Fine by me.
They said they would make that appointment with an oral surgeon. That they will call me when it is all set up.

A few days later they have mailed me a 7-page letter. I rip it open to find out when this appointment is- To realize that it only has the names and phone numbers of dentists in Wisconsin that will do magic on my mouth.
I call the ones that are close- enough. Those that I know I will be able to drive to. 
My back just doesn't like long trips
Lo and behold, no one is taking new patients.  
No wonder they mailed me that list!  Mad about that too. hehehe

So here I sit...
It's OK- (It has to be, right)? And really only hurts every now and then- 
But once again I know I should have made the time (and literally begged) when I knew that my insurances would cover it all being done at a hospital. 

I'd best close- I have rambled on enough for ages, and for all of you that don't post blogs anymore. I do hope you are all somehow still around?

May you all have a 'wunnaful' weekend!
My love to all.

XOXO,
Me

7 comments:

  1. and what about your lungs missy???.............I too mistreated my body not listening to its signs given to me..and look at me.......i'm a train wreck....lol..........good advice given to take a rest and slow down when needed.........keep us up to date on Casey and you my dear friend.
    xoxoxoxoox

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  2. Since Randall has been so sick we have run into our fair share of crappy doctors and nurses. . .

    It is frustrating to say the least.

    I have to echo Pamela's question: What about your lungs?

    You and Casey are always in my thoughts and prayers. Always.

    Love you.

    Your Slurkie

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  3. I'm OK Sweetie;
    (Just can't type for the life of me this morning). hehehe

    I know it's good advice- and someday I might have to do just that.
    Not today though -I have lawn to cut. hehehe

    Casey is hanging in there while she waits to go and be examined. (I forget now if it's Tuesday or Wednesday of next week).

    Love to you always.

    XOXO
    Me

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  4. Sweet SlurkieBaby-
    I have to repeat my previous answer- I'm OK. hehehe
    I know all of the terror YOU are going through, (and it ain't easy either).
    Life truly sucks when someone you love is so godawful sick-
    And then to run into the medical "professionals" who are short of 'something'!
    At least we can change doctors if need be.
    If we couldn't, I swear that Casey would either be dead by now- (Or imprisoned in her hospital room with bars on the door and the window).

    Love to you too!

    XOXO
    Me

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  5. Ok....you know my feelings on Drs..Nurses..Hospitalists...etc....there are good and there the jokes. The ones that treat me like I've not a clue to my own medical history...reallllllllllly irk my last nerve ( that would be the youngin I have as a hemotologist).
    I basically adjust my own Coumadin levels...and he just agrees. I think he's afraid I'll hit him...and he's right! He's afraid to ask to look at Drew's chart and come up to speed on how this disease works in our family. So I have no time for his ignorance.
    I now have a whole new thing for him to wrap his brain around ...gonna see how this works or will I have to lead him by the nose on this as well.
    Casey is a lot like Drew....don't take the fact she still looks like a teenager and treat her as a child. WRONG!! Used to piss him off in a heart beat.
    Drs need to remember....we make their house, vehicles ,vacation, country club, childrens college, wives allimony /child support/ mistress payments. I for one will withhold a Drs payment if they piss me off...and I will tell them why...and until the issue is fixed to my liking ...I won't pay. The Dr who let his intern do my surgery on my leg and I ended up gettng a staph infection ...I didn't sign off on letting that idiot do the procedure.....so I refused to pay the balance of the bill. Told him to be happy with what the insurance company gave him and that I didn't sue the hell out of him. I still have issues with that incision.

    Hope you and Casey find some relief soon. Please get them to go ahead with your cateract surgery ASAP ....you will be so much happier. Bruce has had his eyes done this summer. He is so pleased with the results. No glasses first time in 30 (+) yrs..
    He can get by with over the counter readers...for reading..and non rx sunglasses. He is shocked at the difference.
    Go for it soon!!
    Well AC is out again...and I've got to take a shower I'm dying in this heat...its 81 at 4:25 am.
    Nite...sweet dreams...hugs!

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  6. Dear Sweet Denise;
    As I finally can really sit down to type a few words, I am disturbed (greatly) as a new aura begins to signoify a new migraine.
    Say "shit" I will be keeping this shorter.

    know that there is no way that anyone will mistake Casey for a whiny teenager. I don't think we, (as the rest of her family), were ever -or could have- mistaken her as such. I am sure her sisters will agree with me on that. hehehe
    Truly, from the time she was about 7, she had this "presence" about her that pretty much demanded respect.
    In turn she was very entertaining for us to be with.
    She still can be. Just harder for her to pull off when there is this unrelenting pain she deals with damn near every day. (well YOU know how that goes).

    As far as my eyes... I will wait until I know exactly what is going on with her.
    I know there must be a period of time that one is told not to drive after they are done, and I don't wish to be "grounded" for any reason, during that time.
    The cataract surgery won't be fixing my nearsightedness; just the cataracts.
    But knowing about these make me realize why my eyes have gone so far downhill since I received that damned poisonous Reclast treatment.
    I also hold that [mostly] responsible for my teeth going downhill so damned fast afterwards. (Secondary to the dilantin/phenobarbital I was on as a child, and the vomiting I have done with these blasted migraines of mine).

    Must fly and try to summon a hot enough shower to make this migraine lessen now

    XOXO
    Me

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  7. You and Casey have gone through so much over so many years....
    Some of these Dr's, nurses, and hospitals are about a joke anymore....
    Sure hope you two get some much needed relief soon!....
    Sending lots of love and prayers for the both of you....

    Hugs XOXOXOXO

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