Breathlessness...

Yesterday was brutal.  That is what days where I am out and about are like for me.

I went to my doctor's appointments.  The one with my GP was rather disconcerting.  She had the imaging report sent to her and was very ... somber.  Her nurse, with whom I have a great relationship, told me afterwards that no one in the office wanted to be the one to tell me about the report.  I kept thinking that I must really be a wilting lily to them.  But the doctor was strange ... even talked about "advances in treatment these days."  I thought that call-backs are mostly precautionary.  None of them talked blithe precautionary talk.  SIGH.

I had used my Capital One points for another gift card, this time for groceries.  Since it arrived Wednesday, getting groceries and the glass bead trim for the garage door window were my goals.  I also needed to talk with the pharmacist.

One thing about Medicare I already do not like is the fact that using both Medicare's website and the website for the insurance company, one of my main prescriptions, the one for fainting, showed as a Tier 2 covered drug.  However, only the tablets are covered, not the capsules.  Nowhere is such a restriction noted.  This is a $1,000 difference.  Seriously, $1,000.  Plus, the insurance company said that it is a pre-authorized requirement prescription.  Only that is not noted, either, on either website.  So, how was I supposed to know.  The worst part is that the prescription was run through without Medicare, even though the other seven prescriptions that day were run through properly, so all of these issues were not caught until I got a Medicare summary of my prescriptions for July and noted that the Theophylline was missing.

I would like at least the difference in the cash price and the Medicare price for the capsules refunded, because the pharmacy made the error.  But their stance is that I did not catch the error in time and that the insurance company will not honor the prescription because it was not pre-authorized.  The insurance company insists that I should be refunded the difference, $365.62, by the pharmacy and keeps telling me the website information is correct.  So, the website information is correct but the pharmacy computer kicks out a denial.  No one wants to refund the difference nor can I get a back-dated authorization.  So, going forward, I could conceivably get the medication–in table form—for a mere $8.

My point to all of this is that someone who is disabled, in part, cognitively, is supposed to be able to navigate this mess AND catch other people's errors, when she makes errors of her own every single day.  I have found that there is little assistance out there for those who are cognitively challenged, single, and alone.  And, as I have noted before, there are very, very few accommodations for folk who are physically disabled out and about in the real world.  Like the post office, for example.  No handicapped service window.  No place to sit as you wait.  Only one of the four windows even operated.  Primarily, there are not enough handicapped parking spaces, and rarely are they actually close.  Chiefly, few places have automatic doors.  Oh, how I need those automatic doors.  For one, to not have to figure out if the door is a push or pull door.  For the other, to actually get through the door.

My errands were completed, but it meant that I was up and about for five hours.  By the second hour, I was struggling to catch my breath the whole time.  Huffing and puffing, shaking, foggy brained, and exhausted.  That was me trying to finish up with the grocery shopping.

I did manage to remember to get fresh corn, so I tried a new recipe:  Southern Fried Corn.  I did have to message a friend about what corn milk was, but other than that little bit of confusion with the recipe, I ended up with tastiness sublime.  I will say that cutting corn off a cob is hard work ... very hard work.  The result, though, was worth the culinary labor.

At the GP's office, the staff were talking with me about electric wheelchairs/scooters.  One woman said that it is important that I not wait too late.  I am so conflicted about that.  For me, being single, I would have to have a lightweight version.  Period.  End of discussion.  For those, in either category, I have not found something for less than $2,500.  And neither of the two best options are covered by Medicare.  I could get some really heavy one, but then I would need a lift-gate and a van or something like that.  The scooter version is probably the best option, being just 35 lbs and most likely less if I can pull out the lithium ion batteries before putting it in the Highlander.  But it is ... rather dweeby.

I know ... dweebiness shouldn't matter.

I was short of breath right up until the time I crawled into bed.  My heart never settled back down.  I was trembling and exhausted and moved like a 94-year-old.  Yet I wonder if ... well ... sometimes I wonder if I am not trying hard enough, fighting hard enough.  Even as I scrapped more on the garage door, I wondered if getting an electric mobility device so that I could get out and about with less effort is needful now or merely a lazy desire.

From the parking lot to the actual exam room at the GP's office is the longest walk I make in my now limited existence.  Just getting to the check-in area on the first floor is an arduous effort, and I find it very difficult to lever myself up out of the chair and head to the elevator.  Once through the entrance door, I must navigate two long halls, neither of which have those running handrails.  Yesterday, I could hear my shuffle steps, each swoosh a condemnation of my own weakness.

Pick up your feel, Myrtle.  
I can't.  
You can if you want.

What is the truth, for me?  For several years, I have had people, on the outside looking in, tell me that I am not taking care of myself, not utilizing assistive devices to save my energy for later, when I will need it most.  One woman said that I was recklessly wasting the life I have left in my legs, in my body. Harsh words.

Then there are those who tell me that I am lazy, that I need to try harder.  Others who say that this is all in my mind, that I am willing myself to be ill.  I know the latter is just plain nuts, but doubt is an insidious tool of our foe ... insidious and effective.  

That's the rub with autoimmune and neurological diseases.  So much of their devastating effects are not measurable by testing employed today.  That is why, in particular, the tilt table test, against which I was heavily discouraged to take because of its dangers, was an absolutely blessing to me.  I had a quantifiable, definitive, rather immediate result.  After that, so much of the problems with my body fell into place.  A dark place, but a place nonetheless.  No more females don't handle stress well talk, no more it's all in your head talk. Although it is ... in my head, meaning my brain and nerves and axions and myelin sheathing!

The doubt and disbelief from medical personnel when you have very real symptoms which cause very real suffering is difficult to take.  I think that's why I wrote to the mother of the young boy diagnosed, finally, with Dysautonomia.  But even though I now know full well the whys and wherefores, most of the world—including the field of medicine—know little of them.  Life is an uphill battle, in both living with body/mind/spirit and the tending to body/mind/spirit.

What I do know is the struggling to catch my breath, racing heart, trembling, and heightened anxiety are new and are most unwelcome to me.  Yes, when I am writhing in agony from my innards malfunctioning, that moment seems the worst.  Yes, when in the throes of a migraine, with its pain from even light and sound, that moment seems the worst.  But, in the clear light of day, struggling to breathe is the absolute worst.  Hands down.  Unequivocally.


I am Yours, Lord.  Save me!