Tarpon and breathing

During our snorkel tour in Belize, our tour guide, Omar, took us on a side trip to see and feed the tarpon.

Unfortunately, I found that I was no longer able to breathe and lay on my stomach AT ALL.  I’m sad to say that I couldn’t last more than 30-45 seconds on my stomach, so my attempt at feeding the tarpon was wasted, but it was still great to see them swimming and see others try.

So much of our lives with COPD is spent on the sidelines that it’s important to not forget to TRY.  There is joy in the trying, even if one fails.

Being competitive, though, I was relieved to note that I wasn’t the only one who could not feed the tarpon.

They were beautiful to see, though.  What a great adventure !

Adventures

vs. Reality.

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This is my cousin T in Harvest Caye, Belize.  She’s one of the strongest, most determined women I know.

When I arranged for T to participate in the cruise with other cousins, a spouse and friends, I knew she was a tough cookie, dealing with a bum leg that she’d refused to amputate, despite the fact that the broken ankle had led to bone failure as it deteriorated, and the fact that T is in incredible pain each day.

When I found her in baggage claim in New Orleans, she was very much as you see her now, with a bad leg due to a hip replacement on her left, and a failing leg on her right, with the bonus addition of 3 broken toes !

But, like the rest of the stubborn cusses in our family, T is nothing if not resilient.

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So, I thought I’d arranged a handicapped-suitable reef tour boat, with a swim-up dive platform and easy access on and off the boat when swimming from the shore off which we’d be moored.

You know, something like this:

 

No such luck !

Instead, I’d chosen a tour that changes its itinerary based on the whims of the winds and current, and we ended up going out to the reef on a speed boat with a rickety ladder for climbing on and off the boat.

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It wasn’t until AFTER we got on the boat that we’d found the itinerary had changed, and that we’d be climbing on and off the side of the boat from the moveable (and rickety) ladder, and that we’d be traveling about 30-45 minutes at high rates of speed to get to the snorkeling sites chosen for that day.

Roh-oh…

So, I took off my baseball cap and used it to cover my nose and mouth, ensuring that the speed of the boat didn’t cause the breeze generated to steal my wind.

I also tucked my body as far forward as possible, under the covered part of the boat, to stay out of the breeze.  No way did I want my choice to snorkel causing breathing problems or even a risk of a cold or pneumonia.

The bouncing of the boat was hard on my body, but our captain was good and kept the bouncing to a minimum.

Once we arrived at our drop off point for the guided reef swim (NOT what I’d agreed to)  to begin, T and I stayed behind on the boat while the Roomie swam off with the tour.

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The captain and his crew could not have been nicer or more considerate to the two of us remaining on the boat.

He rigged up a life preserver and a rope for both me and T to hang on to the boat while snorkeling, and I’m glad he did as I did not have the strength to fight the waves and stay near the boat without assistance.  Just too much energy was needed, and the waves were too strong.

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When it came time to get back on the boat, the three (3) crew members assisted us both on and off the boat so that we didn’t hurt any of our existing handicaps worse than they already were.

We swam at two stops, where the boat went ahead of the stronger reef swimmers to be able to meet at specific points for anyone ready to climb back onto the boat, and then we went off to a third location where the boat stopped to allow everyone to swim with the manta rays and nurse sharks.  (Being tired out and a big chicken, I stayed on the boat during that stop), although my for er Roomie loved it.

 

At the end of the day, I love snorkeling, BUT…  I’m still afraid of deep water and big fish (thank you Steven Spielberg and JAWS), but it was a great day where we all got sunburned, at least a bit.

Heading back to our cruise ship, I retired to a cabana in the Vibe beach club area, to hide from the sun while warming up and taking a nap.

It doesn’t matter how much or how little energy I have to do any of the planned excursions – any day at sea is the best kind of day for me.

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Breakfast

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My magical elixir against reality.

Every two weeks or so, I have to pack my COPD and NAFLD and diabetes medications and supplements.  I pack them in a grab and go plastic baggie for each day so that I, a) Don’t have to think about or deal with assembling the magical stones meant to offset mortality, and, b)  Do my best to comply with my medication orders while also supplementing my Rx’s with dietary magic to make up for the fact that I don’t eat fruits and veggies, and with the hope that these vitamin fortifications will help me beat the reality of my physical frailty.

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I have a daily diary I keep, as if that will offset the Endocrinologist’s belief that I am gorging myself daily on sugars and carbs, sodas up the yin yang, and working to actively sabotage my various doctor’s efforts to keep this old carcass upright and moving.

I also try and cook most of my own meals to ensure I know exactly what I’m putting into my body, and that any forbidden sugars and carbs were in my diet with purpose and pre-planning.

Tonight, I’m going out to see Gabriel Iglesias, Stand Up Comic, and enjoy the crowd, the laughter, and share a moment with my buddy, R, who also loves stand up.

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So, knowing that I have to be able to stay awake for an extended period of time, and knowing that I don’t want to miss any part of tonight’s performance by mis-using my limited number of “spoons” for the day, or eating the wrong thing, etc., etc., etc…  I’m sitting on my couch and being oh so good.

Perfect, even.

I’m up.  I’m showered and groomed and resting.

I’m perfectly aware that one wrong decision could leave me exhausted and unable to hide my chronic condition, so I’m behaving.

I hate behaving, but I understand that’s it’s for the greater good.  I understand that self-sabotage by fighting against my reality hurts no one but me.  And, I’m ego centric enough that I want to pass for normal for as long as possible, whenever possible, so I do what I actively dislike and live a regimented life.

 

As Springsteen says in his recent Broadway show, it’s like my own litany of “Church, school, homework.  Church, school, homework.  Greenbeans.  Greenbeans.  Fucking greenbeans.”

In my case it’s:  Get up.  Take my meds with whatever food won’t derail my plans for the most energy in any given day.  And repeat those fucking steps ad nauseam until the weather improves so that I can leave this tin can of a home, or until my next trip comes around.

I know I have it better than so many other folks who can no longer leave their rooms or their homes.  Who are confined to a hospice bed in a hospital waiting for the end.  Or worse, who are out on the streets, truly destitute and without a place to call home.

But, as I sit here contemplating my medicated breakfast of champions, I just hear Springsteen in my head making me laugh.  “Greenbeans.  Greenbeans.  Fucking greenbeans.”  Yep.  It could be worse.

I might be at home in my childhood, dealing with my daily medication routine under the watchful eye of my mother, and facing a dinner of creamed peas and tuna.

Find your laughs where you can every day, and find a way to accept reasonable compromises so that you can do whatever you still desire to do despite the odds stacked against you.

Whatever you do, though.  Stay away from that fucking creamed peas and tuna.

Asking For Help.

Easier said than done.  I gave in and allowed a friend to help me last week, and we were unable to accomplish a task.  So, her husband (a guy I like and respect very much) is now coming over to my messy house tomorrow to see if he can turn the screws that the two of us were too weak to turn without stripping.

I’m tired just thinking about it.

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I can get work done around the house.

Or, I can keep up with cleaning the house.

Or, I can go out and do something fun.

So many choices, and yet so little time.  But, once I ask for help, then I have no control over what happens next, and I hate that loss of control.

I’ve been cleaning the house for a week (last week was REALLY embarrassing for how much stuff had to be moved before we could focus on the couple of things I needed done).  And I’m still not ready for her husband to see my messy house as part of helping me fix this particular problem…

Losing Jumanji

As for reasonings as to why I have such a “meh” attitude?  No idea.

I had a pretty good attitude at the beginning of the Summer.  I loved my trip to the UK.  But, the drama of the canceled flights.  And the frantic efforts to replace the tickets cost me $4,000 extra.  $3,750 for the flights, and $183 for the transportation to San Francisco.

Coming back from the UK, I was still carrying a pretty good attitude, but… paperwork.  I really hate paperwork…

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Fighting these issues, I was told I was only going to be reimbursed $1,000 ($500 per seat), and have been effectively told to pound sand since that point.  I know I need to write the insurance commissioner.  I know I need to chase British Airways.  Instead, I’m sleeping the days away.

I keep trying to tell myself that there’s plenty of time to get everything that needs to be done accomplished, and then I get frustrated when I am not strong enough to do something by myself and need to ask for help.

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And, in the middle of all this drama and whining I recall that I already asked for help (a simple ride to the airport when all transportation was booked), and now the friend who couldn’t give me a ride but who could arrange a short-notice car service won’t let me pay for the out-of-pocket costs. It’s not that I didn’t have the money – it’s that I couldn’t find anyone to take me.

And, being unable to pay my way with her is really driving me crazy and adding to my aggravation with myself and the world.

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Why is asking for help (and not getting the help you asked for in the way you requested it) more frustrating than necessary?

$183 is not chicken feed, and it’s making me crazy that she won’t accept the money back from me.  I’m trying to let it go and just leave the dollars in the CASH APP for her to accept or reject as she wishes, but – somehow – her unwillingness to let me repay her that exorbitant amount of cash is adding to my frustration with life in general.  I am not helpless.  I am not penniless.  (Even though I want my refund from either the travel insurance company or British Airways).

While none of this is a new viewpoint for me, it’s exhausting to not be able to get out of my own way and simply accept that things happen at their own speed, regardless of what I desire.

I guess the signs are right.  I’m not depressed, but I am grieving.

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Crazy, as there’s nothing particularly wrong.  But, having to give way to ask a man for help (and having to accept that help GRACEFULLY when you just want to do it Charlie Sheen style and pay a stranger to do the work because you’re really paying them to go away) speaks to a really shallow lack in my own nature.

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Whatever it is, I’m still out in the wilds trying to clear my head.

My COPD is ok.

I’m being productive.  Somewhat.

I just can’t seem to get out of my own way, my house is a mess, and I’m sleeping way too much.  So, I’m looking forward to another vacation running around with another friend in Oregon and Washington, and hoping that the vacation will do what I need it to do and snap me out of my pity party.

There endith this update.  You haven’t missed a thing.

Counting the days

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Five days and counting ! Got all stressed out last night as my “check engine” light began showing on my dashboard, as my “check oil” light was also playing peekaboo, and yet I have another 150 miles before my oil change is due.

Started stressing out about driving to the show with an unreliable car (it’s only 5.5 years old ! I don’t wanna new car!) so I followed my hunch to pull into the gas station and check the oil. BONE DRY !

Of course, this liberated woman was very frustrated to find that I was too weak to unscrew the danged oil cap (What the heck?!?!??? When did that nonsense happen?!??). But, after 10 minutes of trying, and buying 2 quarts of oil, a nice young man pulled up next to me to run into the store, and was kind enough to twist off the cap when I got off my high horse long enough to ask for help. Side note: The book case that’s too heavy for me to move is still standing in my driveway as I’m still “thinking” about asking for help moving that up the stairs. Haven’t yet overcome my frustration enough to ask for help on that issue yet, either. Arghhhh!).

Anyway, since when is it now the new normal for the check engine light (a useless, vague prompt if I ever saw one) to come on BEFORE the check oil light, but especially when it’s the engine oil that clearly needs attention?!!

No answers here, but filling the oil tank with three (3) quarts of oil appears to have resolved the problem.

Did a round trip of 30 miles to get the oil well spread throughout the engine, and picked up a pepparoni pizza for dinner as my reward for trusting my instincts and getting off my high horse long enough to ask for help.

It’s only Tuesday morning, and I’m wiped out and need another nap, pronto. Sheesh.

On a good note, though (and knocking on lots of wood so that I don’t jinx myself), I am so looking forward to seeing P!nk this Saturday night. Hopefully, there will be no more surprise expenses with my Kia Soul.

 

Resentment.

Petty resentment.

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I bought a bookcase today.

A simple, used, wooden bookcase that will solve some of my storage issues for the office, while allowing the stained glass lamp I purchased to rest on the top shelf, gently lighting the room.

All good, until…  I find out it was sold by the Vice President and his wife (he’s part of the Board of Directors that I’m on for the homeowners association of this senior mobile home park).

All good, until…  I realize that he’s going to help me lift it and put it into my car.

All good, until…  I get it home and realize that I’m weak as a kitten and can’t do more than wrestle it out of my car with the help of my business partner (a 74 year old woman).

So, it stands in the driveway until I can either:

– Get out of my own way and ask for help, or

– Have enough energy to wrestle it up the stairs so that I can then bounce it corner to corner to manage the weight and get it down the tiny hallway into the back bedroom.

Heaven forbid that me, a Liberated Woman, get gracefully to the point where I can ask for help.

And, you can bet that I very much resent the fact that men get better looking and don’t lose their strength so quickly as they age.  Yes, I’m being petty, as I realize that I have an underlying condition.  But !

COPD Weaker Muscles

Even with the results of a recent COPD.net poll in front of me, showing that I am not alone in suffering muscle weakness, I still can’t bring myself to back down and ask for help.  Even when it’s offered (as Brad offered).

As the P!nk song says, “I’m a hazard to myself”.

I’m trying to get better and get out of my own way, but the battle to fight the rearing of one’s ego is quite a war to fight.  Pride.  Independence.  Dependency.  Helplessness.  So many mixed emotions, and it’s all wrapped up in my Liberated Woman self-image.

No answers here, but I’m working on fixing this particular stumbling block and learning to accept that which I cannot change.

$6,000 Conversation

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Had my quarterly doctor’s appointment with my pulmonologist, and he – again – wanted to know who my primary care physician was.

Yep, it’s still him.

All my problems begin and extend out from a bad set of lungs, so why oh why would I put another gating doctor between him and me?

I already see way too many docs as my body fails (him, then the endocrinologist, then the herpetologist, the eye specialist, and any one else that needs seeing).

There’s now an issue with my heart that showed up during the clinical trial pre-qualification testing at the liver clinic (with the herpetologist).

There’s always something new showing up.  It’s just parr for the course as the inflammation spreads to the other organs in my body.

But, while the doctor wanted me to have a colonoscopy because Medicare is requesting it, I pushed back.

Why?  Why go looking for trouble when there’s already plenty to choose from, and I don’t plan to go wandering down that alleyway, getting an exam “just in case”.  That “just in case” kind of thinking is for healthy people, people who have a wonderfully functional body.  It’s not for people who are just trying to keep busy and enjoy life before the inevitable end.

While the doc agreed to that rationale over the heart issue  (the problem is a known side effect from medication damage and already struggling lungs), he went to bat for the colonoscopy, which was pretty funny.

We compromised in that I will do the at-home test, which has an 88% accuracy rating.  And which compromise will get Medicare off his back over the paperwork for their care standards.  (Sorry, doc, but you ARE my primary care physician, since my primary problem is bad lungs).

That being said, though, it lead to the next challenge, which was the $6,000 a month diabetes medication recommended by the endocrinologyst (I ain’t doing it), and another conversation about euthanasia.

While he has always side stepped the conversation in the past (he is very much about saving lives) I think the death of his 95 year old mother last November convinced him that there is a time and a place for such moral dilemmas.  Finally.  Her end was long and drawn out, and both she and the family suffered with this beloved 95 year old woman for almost a year before she passed.

There are no easy answers, but it was a good conversation where I made it clear what I wanted, and he agreed to honor my choice.  Finally.