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.

Refusing To Hide

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We had an ongoing joke in my mother’s home, “That Doesn’t Count”.

Mom’s COPD was first diagnosed about 1988, and from that point onward, insurance coverage got harder and harder to obtain for the use of the benefits she was paying for as the health records became digitalized, and could be data-mined to blame her for her illness and deny her coverage.  Profit above the concept behind buying insurance to assist if something goes wrong and life hands you a rainy day, season or life.

Like Leonard Nimoy, Mom was a smoker, and so there was lots of shame and self-recriminations because she found it impossible to beat her addiction. Similar to Daisy Gamble in the film, “On a Clear Day”, she tried hypnosis and many other alternative medicine therapies but nothing worked.   Smoking was her go-to habit that she just couldn’t quit.

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While my sister and brother harped on her to stop smoking, I knew the truth.  It was too late, and stopping her 1 addictive joy wouldn’t change anything.  They didn’t or couldn’t realize how much help she needed in the home.  Stairs were off limits.  Yet the washer and clothes dryer were in the basement.  Up and down an exhausting set of stairs.  If she didn’t do her own clothes, no one else living in town would.  I knew, though.  When I challenged her on the exhausting realities of her weekly / monthly / quarterly routine for getting things done and the physical barriers she faced, I’d get her standard response, “Stairs?  Oh, that doesn’t count.”

Eventually, I talked her into selling her home and moving into a condo to reduce the amount of space she had to maintain, so that she could maintain her independence as her world got smaller and smaller as the disease progressed.  I flew back from CA five times in a year to help her pack up her home and sort through her possessions to reduce the bulk.  Meanwhile, my brother and sister lived withn 5 miles of her home and were oblivious about the reality of her abilities and how hard she worked to hide the truth.

I guess my early years, spent mostly bedridden, gave me a more realistic insight into her situation and how best to support her decisions.

To illustrate… When I was well enough to be allowed out of bed and off the leash, nothing was going to stop me experiencng all that life had to offer.  Climbing trees.  Horseback riding.  Jumping off the swingset at the height of the swing.

Despite cutting off my pointer finger (successfully reattached), head wounds, ankle injury bike riding, leg impalement, being tossed off a horse, being dragged downhill (a chest-first belly-flop in a bikini when a rope swing over the lake went horribly wrong because I just didn’t have strength in my arms due to my chest muscles being cut – again – for yet another repairative surgery), etc., etc., etc., I wasn’t going to be contained ‘for my own good”.  So, I had a clear and realistic insight as to the source of her denial, and refusal to ask for help.  If you ask for help, you are less.  Less capable, less autonomous, less (whatever).  By asking for help, you are making yourself vulnerable to someone else’s judgement.  If you were in need, after all, shouldn’t they just notice, and volunteer?  So many crazy, conflicting emotions and cultural messages to wade through.  So, I learned to bull my way through things from a wonderful woman and a perfect example for, “Do what I say, not what I do”.

Despite hearing my Mother’s voice any time I was allowed off the leash,

“J______, you WALK !”

being bawled at me across woods and playgrounds, I ignored her fears or her good intentions and did what I wanted, regardless of the risk, regardless of my parent’s financial worries for another medical bill, regardless of any measure of good sense.  I was alive, and I would worry about the repercussions tomorrow for today’s choices.

Despite it all, however, I understood very intimately the fight to live and do what you choose, just because you’re not dead yet.  Not merely “still alive”, but more an acknowledgement that no one ever gets enough time in life, so it’s up to us to seize life with both hands because only we know what makes life worthwhile to us on a personal basis vs. an endurance of tedium and restrictions to ensure we keep on living while sucking the joy out of whatever life we have left.  Or, heaven forbid, to be beholden for someon else, no matter how loving, expecting gratitude for sitting in judgement on your health circumstances.

So, it’s incredibly hard for me to be lectured in all the COPD literature about stopping smoking.

I’ve never smoked.  But, I do know, intimately, how pointless it is to lecture someone about something they already know. Especially when it involves an addiction.

When your life is built upon beating the odds, however, it’s important to focus on what you can do, vs. what you can’t do, or shouldn’t do, as part of making the best use of every minute we have on this earth.  Stuff has to get done.  Choices have to be made (as there’s never enough time and energy to do everything we wish to accomplish).

As her energy waned, I saw my mother shamed, under the presumption that her smoking caused her COPD, and I live in contrast to her particular situation.   Kind of a “tough love” version of ignoring a handicap or a frailty because “you only have yourself to blame”.

Ridiculous thinking – to blame the victim, however, I grew up with a variation on that same shame stigma because of my frailties – even though I had done nothing to earn such a difficult journey.

Truly, there are many folks who believe that suffering must be penance for some yet to be discovered character flaw, or as a penance from a prior lifetime of evilness.  Crazy, but that’s just one of the many unspoken messages I picked up from an indifferent culture who wanted me to either be miraculously cured, or hurry up and die.  Regardless of my reality, I was a waste of precious resources, so I needed to suck it up and move along.

To quote:  “There were plenty of people who had it worse than me.”  (That thinking will be the subject of another blog).

If I was asking for less hassle because I was ill, I must have done something to turn God’s love and healing light from me.  Society had no time or interest in the reality of my life as a survivor, flaws and all.  They wanted hale and hearty, or they wanted me gone so that I wouldn’t be taking up space, possibly “contaminating” the healthy folks.

When comparing Mom’s illness journey and mine for dealing with COPD, there appeared to be only 1 visible difference:  I had birth defects; I have a partial excuse.

Due to my first-discovered birth defect (there were more) I had a pectus excavatum (rib cage deformity; fixed multiple times before I said, “enough”), and I, too, grew up in a household where second hand smoke was the norm (just as she did for the whole smoking issue).  I therefore submit that my COPD is through no fault of my own.  There was nothing I could have done differently in my birth or formative years, so I refuse to feel shame.  If Mom & Dad had never smoked, the bad lungs gene was already in our family tree, so she might also have ended up with COPD regardless.  That’s the fickle finger of fate that I rail against.  Why is one person’s life so blessed and another’s so challenged?  No answers here, but it’s just something I think about for evolutionary variants as I see so many people struggling to survive, to remain independent, to be happy despite their realities.

I just wish I could have gotten it through to my Mother that shame doesn’t help and that sh*t happens, despite our best intentions.  She grew up in a house of smoking parents.  Her siblings all smoked.  1 sister has already passed due to COPD and other health complications.  The other sister is gravely ill with COPD, and other health complications, despite ceasing smoking almost 20 years prior to her diagnosis.

Life is what you make it, and how you deal with the spanner thrown into the works is just another challenge to be faced down and defeated or endured.  Shame has no place in my story, so I will talk loudly and without embarassment about my challenges and how I’ve adapted and continue to evolve to pursue life without regrets over things whch are out of my control for changing.

If we are going to insist that people live, that they use whatever talents some nameless, faceless, yet-to-be-proven higher power has bestowed upon them, then we must accept that bumps, bruises and damage happens and is a normal part of the journey through life as less than perfect beings.  Recriminations about things that can’t be changed is a pointless exercise.  No one can live in a cage, regardless of how pretty, well padded or gilded.  Sh*t happens.

Magic Beans?

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In my efforts to ensure that I’m not too old to benefit from cutting edge technologies, I do my own research.  Even if my health insurance company won’t pay for a treatment (heck, they called a CT scan “experimental” on a recent invoice), it doesn’t mean that I shouldn’t consider alternative medicine.

While I’d love to be wealthy and able to choose my line of work without consideration of the ultimate pay rate, that’s just not my reality.  Not being paid for my disability through continuation of my salary (as originally promised in the materials and procedural outline provided by my company), means that things got very real when they (finally) approved me for unpaid disability (Family Medical Leave Act), while denying the fact that my doctor has declared that it’s time for me to stop working.  I’m now under what remains of a 12-week job protection deadline, where I’ll be booted to the curb and terminated sometime after December 31st, and the ticking of that clock is getting louder every day.  What’s my backup plan if it turns out that I myst return to some sort of employment to keep the wolf from the door?  No idea, but there’s a bookstore locally that I’d apply to while looking for receptionist-type jobs.

I’ve launched an ERISA inquiry through my employer as of Monday morning, and as of today I stepped up the heat to remind them that they owe me an answer – not the insurance company.  My employer will be on the hook for any benefits owed to me, should it be determined that I was treated improperly due to a conflict of interest for preserving profits (vs. caring for their patients with paid up benefit entitlements).  Of course, I could be dead by the time that they make up their minds, so I’m also looking at Plan B for pursuing Stem Cell therapy for my breathing difficulties.  If I have to work, I need to explore every option to improve my erroded endurance.

Magical

The steam cell theory seems like it may be worthwhile pursuing, however, they have only treated 1,000 patients since launching their operation, and all track record information for how effective the treatment was is empirical in nature, and less than a year old.  Magic Bean territory, for sure.

I found a few more companies providing similar services – one right here in Silicon Valley – however, since their efforts are geared toward the cosmetic industry in the Silicon Valley operation, I may do better considering the option out of Arizona.  Maybe.  I’m very biased against narcissism being the core treatment philosophy for the doctors providing a medical service to me.  Regardless of how wonderful their credentials appear to be, if they spend days injecting lips and moving around fat for appearances sake?  They just don’t feel credible with regard to their core vales for truly helping people on a core level (yes, I’m very judgy) and so do not appear to be the right doctor for me.  All this, before I’ve met a single person from that office.  See?  Judgy.

The least expensive option for treatment is $7,500 – not out of reach – but certainly not chump change.   It remains to be seen if my doctor will agree that the treatment is worth pursuing, or if I’d be buying some magic beans in the hope of restoring my life and energy level to normal (for me) so that I don’t have to keep on worrying about money 10-15 years sooner than society says I’m entitled to stop working…

What you want to hear

Home is where – part II

Fix yourself

As I wrote in an earlier post, “Home is where you go…”, I’ve been trying to help out a senior friend of mine with regard to getting prepared to move into her own mobile home, courtesy of her family.

However, as with all events lately, there’s been a spanner in the works.

C’s older sister has mild dementia.  It means that she doesn’t remember much for new memories in the short term.  She repeats a lot, but generally knows who people are, has happy and sad days, and is doing ok as long as she’s living in a protected and calm environment.  However, the older sister, N, is married to a Doctor (yes, capital “D” for his eminence), who loves to stir up drama.

Unfortunately, C chose to go to N and D for help in having a temporary place to live, and from there it’s evolved into the nieces wanting to get C set up with a mobile home, because D was all overwhelmed and bezerk, and then D becoming a megalomaniac over C’s living arrangements, financial issues, etc., etc., etc.  Background:  D’s life is messed up because his wife isn’t waiting on him hand and foot anymore (he’s in his late 70’s, so you have an idea, I’m sure, of the kind of housewife he’s always enjoyed, the the spoiling he was used to. etc.,), before N began to be effected by dementia.

So, while C was very surprised and pleased by the offer to get her a mobile home, that was never her request and never her goal.  It was something offered to her by her nieces.  And, everything was looking well until D lost his mind over how bad “C’s” life choices had been, her dependence, etc.  All for the cost of a home that’s less expensive than many car loans, and which everyone in this picture can afford.

C was told that the home had been purchased, but then was subsequently informed that the nieces were taking over her finances.  Immediate red flag.  Especially since it hadn’t been discussed prior to the purchase of the home.  (Which, update, it now turns out was NEVER purchased.  Red flag # 2).

Chris s new home 12NOV15

C persevered, though, as she was under an eviction notice from the landlord / friend, and the time limit was running out.  Cut to the chase in this drama, they picked up all of C’s large items last Saturday after some drama with the landlord (she didn’t want anyone in her house), and the nieces drove away with the bulk of C’s belongings.

Sunday night, after the belongings removal, however, one of the nieces then informed C that she was “too handicapped” (whatever that means) to take care of herself, and that they were moving her into assisted living instead of the mobile home as discussed and agreed upon.

So now, C’s having a meltdown.  Decisions are being made without her involvement, her money is being allocated (verbally) for expenditure without her consent, and her monthly costs have gone from an estimate of $800 (both mortgage and land use fees) to $1,100 and living under “supervision”.  No discussion, no negotiation; just a done deal.  A deal that she didn’t sign up to in concept or in actuality.

Crazy.

So, I talked my friend off the ledge momentarily, but (at the time of the first draft of this blog) we’re still dealing with the reality of trying to figure out if the unit has been purchased (leaving me to deal with her family and finances), or if we can go and see the unit and put down the downpayment and related credit check so that I can purchase it and live there short-term with her, while things settle down for both of us.

Yes, it would reduce my expenses tremendously to spilt such cheap rent with another person.  But, it would also mean that I’d be moving 2 hours away from where I’m currently living in order to have a roof over my head while working out the details of the ultimate ownership unit.

I’d have a roommate, and while that’s not an ideal situation long-term, it would be a workable solution for the both of us to reduce our expenses short-term, while we figure out what’s happening with my disability, as well as getting C stablized in a place of her own.  I can always move out later, leaving her to assume the mortgage, after she gets her own situation straightened out.  Or, I can remain the landlord and then have a quitclaim deed signed so that the property evolves to her in the event of my passing.

Lots to think about, but since I was already on this road anyway, earlier this year, it’s something to consider while trying to determine if the deal is doable.  And, if I can get approved for this new loan knowing that my disability status is still up in the air.

This will also give us time to lock in the place while seeing if the nieces will calm down and co-sign as long as I’m there in the interim, and before my friend gets her knee replacement surgery.  Whatever, we’ll figure out something, if the Gods are willing and the bank agrees…

I am just a really liberated woman, and get aggravated at some man taking down my friend because her situation is not to his liking.  My friend being homeless is not to my liking, but that’s life.  We all have to do things that we might not otherwise consider.