Empirical Comparison

I’ve been trying to write on the iPad for 3 days, and I fear that the site redesign has killed my ability to blog using that tool.

However, I’m over on my laptop today, so I’ll play catch up before my company arrives for the weekend.  (Anything to put off the cleaning I’m supposed to be doing, LOL).

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One of my pet peeves with this site redesign is that I’ve been trying to post this picture and write this blog for over 3 days, and it won’t let me add the picture first, and then type.

It’s type, and then add the photo, or nothing.

Plus, the new way they have compressed the size of the page as it competes with the software-only keyboard on the iPad, and the way I need to try and slide up and down to access data (which can’t be reached) is aggravating.  So, it will be a bit before I blog again as I can’t get to the laptop that consistently (and I have no idea why).

But, that being said, I have enclosed a poorly lit photo (to save your tender sensibilities from anything that would make you go “ewww!” to contrast the challenges of my feet / white marks and grooves in the nailbeds, bs. the otherwise acceptable appearance of my naked fingernails.

Unless it’s a major event, I don’t use nail polish on my hands as they just can’t stand up to the wear and tear.  My nail beds are too fragile, the nails peel and split, so I long ago stopped wearing nail polish (just like I stopped wearing makeup) because my body just doesn’t like it.

With the advent of the COPD worsening, I’ve now had to stop the use of toenail polish as it’s cutting off necessary access to oxygen, as noted by the overall whiteness and dried-out appearance of the toenail beds.

Not sure if anyone else with COPD has experienced this problem, but I’m throwing this out there for comment as a way to find out, empirically, if I’m the only one with this, or if it’s more common than the internet would lead one to believe.

 

Yet more exercises.

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Saw the physical therapist on Tuesday, and he couldn’t find a consistent pulse in my right wrist.  Couldn’t find a pulse at all in my inner elbow.

We talked about the problems I’d had with Anoro Ellipta, and then the worse problems I’d had with the Striverdi Respimat, and he concluded that the prior rupture of the pulse site vein in my inner elbow during an aforesis blood donation may have been an attraction for the medicine causing the arthritis-like symptoms to congregate.

Wonderful.

Yet more damage done by a medicine designed to “cure” or at least alleviate my breathing difficulties.

So, $125 a visit (after the initial $195 evaluation) for 4 more visits, and then we see where we stand.

Hopefully, this new exercise regimen (much of what I do while swimming at the YMCA) will resolve the problem.  If not, then it’s on to finding a vein specialist to take a look at the arm.  Finding out that there’s virtually no pulse in the arm makes sense, but is pretty alarming for a longer-term perspective on what medicine can do to make one worse while trying to treat a different and separate issue.

 

Superiority

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As I’m working my way through this whole medical saga, I’m finding it very aggravating to deal with the 5,001 flavors of doctors.

I met with the endocrynologist yesterday to finally get *my* menopause related questions addressed a year after we started, and I spent most of that hour being berated and chastised because *I* didn’t communicate with specificity.  To the level of a doctor.

Seriously.

She was quizzing me on what I “thought” I knew, and she was obnoxious.  “Well, I know that 4 (carbs) equals 1 tsp of sugar.”

“Grams.  4 GRAMS of carbohydrates equals 1 tsp of sugar.”  she corrected.  She even did the eye-rolling thing, which really ticked me off.

Apparently, while I have my blood sugar under “reasonable” control, I test “too much”, so she’s only (and finally) given me a prescription for 50 test strips a month.  At $86 or so for out of pocket savings, I’ll take it.  Too little, too late, in my humble opinion, though.

Apparently, I *cannot* be having blood sugar crashes – even though I feel crappy if my blood sugar falls below 90 – as one can only have a “crash” if one is on blood sugar medicine.

Seriously?  I feel like crap, and that’s perfectly reasonable because it’s not technically a crash?  Humphhhhh….

The kicker was when I asked about a small mass on my adrenal glands (which all the medical literature says is “nothing”, but which I wondered if it was contributing to my exhaustion), and she went off on my pulmonologyst.  Said he was “neglectful”.  Implied he was incompetent, and that no one was as smart as she.

That’s it.  I’ve known this Sheldon Cooper-like bimbo for almost a year of crappy care, and I’ve known my pulmonolgyst for 22+ years, and *he’s* the incompetent one?

Not hardly.  Allowing me to participate in my own care is anything but incompetent in my humble opinion.

Time to go research alternative doctors.

This one’s got on my last nerve.

Just call me ‘Pancho’

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Got through the weekend mobile home shopping with a friend that is floundering and refusing to accept reality.

Her extended family is trying to help her avoid being homeless, but she sees zero reason to go along with any plans they’ve put in place for her – even as a temporary solution.

We got up to the storage unit where they’d placed her items – 3 hrs drive away from where she currently lives – and she insisted on arguing with the manager of the place for over 45 minutes about how they “stole” her items, and she should be allowed to change the locker into her own name.

Very frustrating to watch, as he had no authority to void the contract on her say-so (she wasn’t named as a signatory on the storage unit, even though they’d given her a key to get in and get what she needed).

Zero acknowledgement that I couldn’t physically mover her stuff to a new unit (even if they had one).  Zero acknowledgement that the unit manager was bound by contracts and property theft laws to not participate in whatever solution she wanted which involved terminating control of the unit by her niece and husband, without their written agreement and acceptance of the plan.

Very sad.

While I don’t want to be an enabler, my innate willingness to help gets me in trouble every time.

At this point, I’ve done what I could to help without adding to the harm, and I’m going off to enjoy my own weekend with a friend, visiting.

Best I can do…

Vanity dies in small ways.

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I don’t have many vanities.  However, I do think my feet are pretty good.

That vanity changed for me last night, though, when I had to have part of my toenail removed in response to apparently diabetes-driven ingrown toenails.

Seriously?!!

It’s not enough that I’m fat and masculine or asexual looking.  My one girlie vanity is going to be stolen away too, bit by bit.

The attending wasn’t pleased that I wouldn’t let her do a nail-ectomy (or whatevayacallit).  However, having completed my first partial nail removal, I can see she did a hack job.  I’m glad I decided to wait for the professional.

While I will be thrilled to be out of pain in the short term, I am not looking forward to having my one vanity tajen away.  This, too, shall pass,  eventually.  The death of vanity, though, is a very (emotionally) painful thing.

Similes. Not Synonyms.

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As I wrote in an earlier post, all diseases are not created equal.  Because my situation does not fit into a tidy label, I refuse to be classified as a fraud and a cheat, as someone who isn’t willing to try hard enough to succeed.

While I don’t want to use my work history as a 1-size-fits-all example, my 42 years spent working should have some relevancy value in proving that I like an income for which I don’t need to rely on other’s compassion to receive, and that I prefer to work.

What I am seeking is the minimum income threshold so that the fear of looming financial disaster isn’t hanging over my head.

People with COPD find it harder to keep up in the later stages of the disease, and often get fired because of their declining endurance.

I am in no way comparing myself to a veteran with PTSD, with missing limbs and constant pain.  I am not comparing myself to a cancer patient going through chemotherapy and related brain fog and exhaustion issues.  Everyone has different issues, and one size DOES NOT fit all when it comes to understanding how people thrive and bounce back with whatever their health issues may be.  Or, with how they slowly wind down until they pass away.

I watched my mother struggle to get the benefits she paid into for her entire life, she was denied, and I’m just not that polite and ladylike.  I’m a scrapper and will fight for what I think is reasonable, even when denied.

As I’m apparently going to fall into the “slowly winding down” category, we’ll see if they have room at the disability benefits table for me.  Today’s HR specialist tried to tell me that ERISA isn’t involved in our plan (I beg to differ), but there may be some loophole granted to my German-based employer that I’m not aware of at this time.

Will her comment make me stop fighting?  Nope.  I will keep pursuing this claim until all arguments are exhausted.  So, I pushed her back to actually reading her own mail, and doing what I could to be diplomatic and not alienate her from my cause.  She was home sick with a cold, and while I conceded that she needed some time due to her own illness, I also expect written answers.

I’m stubborn that way.

Meanwhile, the manager of the mobile home community I saw this past weekend just called me, and I may have a lead on another unit (with a ramp and a fenced yard!) to go look at this weekend.  Fingers crossed for good luck on one of these.

The Fight Continues

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Progress !

Finally got HR on the phone today, and they are going to opt for a peer medical review (doctor to doctor) vs. “clinicians” continuing to fruitlessly deny my claim.

They aren’t sending me for a medical exam yet, but at least their doctor will contact my doctor for a discussion behind his reasoning, and I’ll hope to make progress.

Should know more in 10-15 days.