New Beginnings

Jo Dec 2017

Despite all the restrictions from the lawyer.

Despite the reality of breathing challenges.

Despite a tight budget and zero discipline… I made it to the Caribbean for Christmas, and am getting ready to embrace new beginnings for 2018.

I faced every challenge and persevered to win the day.

Despite the highs and lows, I am happy to put 2017 to bed in a few short hours, and see if 2018 is better.

I survived the challenge of breathing while climbing up and down stairways and across rickety plank walkways (that I *never* would have walked across, if not for my competitive nature and unwillingness to be humiliated by being unable to complete a task.  Even if I never agreed to the challenge.

I got to do the underground, hidden river swim, and I was right.  The problem was never with the swim but with the tour guide who added an hour’s plus of walking onto the schedule unnecessarily, making what should have been an easy and fun day into a challenging test of endurance.  But, I endured (even if I complained) and I had a great time on the part I signed up to try.  The other part was a hassle, but the memory of the swim will stay with me for a lifetime, and give me courage to do something similar again, if ever presented with such an opportunity.

Xcaret river swim DEC 2017

Having returned from this adventure, I spent most of today sleeping.  It’s clear that I needed sleep the most, and will be heading back to bed again soon.  Looking at my numbers for how well this trip went when comparing early December numbers to end of December numbers for steps and sleep:

Best - Worst Days for Sleeping Breathing Dec 2017

The red and white graph is the number of steps per day.

The blue and grey graph is hours of sleep per day.  (The horizon line is 8 hours, and I rarely make more than 6 hours in a 24 hour period, including naps).  And, yes, there were 3 days in a row where I got zip for sleep while also doing 8,000 plus steps per day.  Those were the days when I used my xopenex inhaler to combat the humidity and need to be alert and moving to keep up with the demands of travel.

Unfortunately, I’m in a bit of pain most days.  Moving is hard, but it’s important to keep on moving to try and work out the kinks and to keep it from getting worse.  I know well the old saying, “That which doesn’t kill you makes you stronger”, and have found that working through the pain to get the kinks out makes most things tolerable every day.

I’m thankful that my pain isn’t excruciating.

I’m thankful that my lack of sleep isn’t permanent.

I’m thankful that I manage to dig up the funds upon occasion to be able to travel and see the world, despite any challenges that I may have in dealing with daily life.

Despite all the challenges and frustrations with the lawyers for 2017, it’s ending on a high note and I’m hopeful that being defiant will continue to work for me in continuing this journey through to 2018.  And that my funds will hold out to make more adventures possible.

Whatever you’re reviewing as you close out 2017, I hope your plans for 2018 include following your dreams and accomplishing your goals.

Happy New Year !

 

 

Pariah.

Noun.  An outcast.  “They were treated as social pariahs”.

Synonyms:  Outcast; Persona non grata; leper; undesirable; unperson; nonperson.

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I’ve been trying to stop obsessing over the soul-deep hurt I’m feeling at being cast out from my family, but it’s been getting harder and harder as this year has progressed.

The breaking point has been No. 2 Nephew’s engagement.

When my Mom passed away, things changed.  We rebuilt the grapevine among the 3 remaining siblings, but it took time.  I never doubted that I was still part of the family, though.  Even though Mom had been everyone’s touchstone for connection.

Despite the fact that I know I make people dislike me and get on their nerves simply by being me, it never occurred to me that I was an expendable member of the family.  I never doubted that I was still a valued member of my family, despite the physical distance between us.  Even when my siblings made their own families.

I made sure to call, to write, to send gifts for occasions important to the family, and also to physically go and visit at least once a year or more, and to make time for significant occasions (births, graduations, showers, birthdays, vacations), as well as host them in California for a visit.  On my time and at my expense.  I was thoughtful and considerate, as I wanted to be sure to keep those most important of familial bonds tight and healthy.

I made my extended family a priority, and I am stymied as to how that could have changed in 2 short years (since I was last home in 2015).

For the 32 years that I have been on this coast, I did what I could to keep my budget aligned so that I could still be a part of my family long distance.  Once I learned of the engagement, I was waiting all year for official notice of the shower, the wedding, and an invitation to what I consider to be a “family” event of the year.  But, as this wedding is showing me, I’m no longer “family”.

They must have read the Trump rules of immigration and decided that I was not close “enough” in the bloodline to be considered “family”.

Family 3D cube Word Cloud Concept

When my brother passed away, things were also weird.  But, we all tried.  I showed up.  I made nice with my father.  I did what I had to do to honor and respect my brother and his choices regarding our father, despite his passing, and it was ok for awhile.

Until it wasn’t.

Calls / voicemails left at the house went unreturned.  Efforts to keep the connection with my sister-in-law and the boys fell by the wayside, and I chalked it up to her being busy and them being male, and less indoctrinated in the “shoulds” of polite behavior.

Silly, narcissistic me.

Lucy needs love too

Upon receipt of a complete lack of welcome, I stopped dropping by their home when I was in town (last my last visit was in 2015).  I can’t be polite and call ahead to let you know I’d like to see you and visit, if you won’t return my calls.  I get it.  Catch-22.  Especially since the older son was trying to honor his father, my brother, by taking care of his Grandfather, my father, long-distance.  The man with whom I’ve haven’t had a relationship since 1979 / 1980-ish, after formally cutting ties and giving him every opportunity in the intervening years to fix any one of the many breaches.

Even though I am very polite when we are thrown together.

Even though the things he has done are unconscionable.

Those are my bags to carry, since I chose to pack them, and I shoulder them alone, regardless of what the other members of the family choose to do regarding allowing this toxic person to remain in their lives.

I am an individual as well as being part of a larger whole, and I accept that each of us will make their own choices about who to keep in their lives and who to exclude.  I never asked them choose between us, yet I sense the long, claw-like fist of Daddy Dearest reaching down the long years that separate us to poison another generation of familial bonds.

While I met up with my brother’s family at my Sister’s home for another nephew’s graduation in 2015, Baby Sis was mad about a lawsuit that I was launching against our father to settle the long-disputed gravesite.  I’m used to Baby Sis’s fits of temper, and I figured that it was just her being dramatic as this dispute is something that has echoed through our family since 1965, when our middle brother died.  And something I expect her to refrain from taking sides over as it’s my cross to bear and resolve, if possible.

It was a long, drawn out fight between our parents over yet another thing my father stole that my mother paid for, and which also had some skin in the game for me, since one of the four grave sites was meant for me.  Me who was never supposed to live this long.

My mother was clear to choose me to handle her estate because she knew that I would honor my promises to her.  Even though I lived 3,000 miles away and she had two other children in town.  One of those promises involved resolving the long-disputed grave site.

When my brother died, I let it ride as I hoped to be able to outlive my father and avoid more drama.

However, in 2015, I was out of time to wait for events to play out as my Big Brother had passed away, I was confronted with the immediate knowledge of having a much shorter life expectation due to the COPD worsening.

So, I chose to act to try and resolve the outstanding issue.  $5,000 out of my pocket, and the situation was aggravated vs. being resolved.  The lawyer I hired promised I had a fightable argument, but instead was a shyster who took my money and made the drama worse.

I own it.

I couldn’t make any other decision as that was my promise to Mom; to try and fix Jimmy’s grave.

But, to now have it be 2017 and have it devolve from my Sister being coldly silent to being a family pariah?  How the heck is that even possible?  I have done nothing new.  Nothing deserving of being an outcast.   Being excluded from a “family” wedding is beyond my understanding.

Especially as this drama dates back to a theft between my father and mother, and I did nothing wrong in trying to right a wrong.

But, as my No. 2 Nephew is about to get married, the hurts are piling up.

I’ve tried my best to accept that it is the bride’s call about who is invited to the shower, to the wedding, etc.  I’ve tried my best to accept that they were in town in California and never called or wrote me so that I could at least drive up and say, “hi”.

Lucys valuable time

However, it’s become an obsession to understand why these people are all still connected to me on facebook, yet won’t return a call nor will they include me in their lives.

If you really think I’m toxic, wouldn’t you simply unfriend or block me?  Why the games?  Why the illusion that we still have a healthy connection?

If you’re mad at me, is it too much to ask that you say so, and say why?

If you, from your financially blessed viewpoint, think I couldn’t afford to participate due to my illness and tight budget, is it too much to ask to still be invited so that I could make my own choice?

Family Takes You In

To quote:  “Family is the place where you’re supposed to be able to go and they have to take you in.”  They don’t have to like it.  They don’t have to make it comfortable.  But, they are supposed to at least show up and try to participate.  Or, tell you what you did wrong and why you are no longer welcome.

It’s heartbreaking to know that I have ALWAYS behaved well in public, and yet I am the being trimmed back from the family tree and wedding invitation list as if I was a neighbor and not family.  Wiped away as if I never existed.

I understand toxic personalities, as I’ve had to deal with my own reactionary behavior and learn how to stop giving it power in my life.  Moving 3,000 miles away from the drama certainly helped, however, it was never meant to cut me off from the good parts of my family tree.

It’s earth shaking to presume, however, that I’m being seen as the toxic personality.  I just can’t seem to wrap my mind around what it is that I could have possibly done to be abusive to anyone else.  Not after years and years of self-checking my behavior and words to ensure that I wasn’t dragging anyone else into the drama between my father and myself.

That stalemate will never resolved itself as he wishes I was dead, and yet I’m still here.

That stalemate should have stopped being an issue when I moved away, and yet he’s still obsessive about my refusal to accept his version of events over my own memories.

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I haven’t discussed this topic with anyone besides my father, who is my nemesis and my abuser, and my sister, who has a whole set of her own family baggage to resolve on her own, when or if she’s ever ready to address the woman in her mirror.  So, I’m just dumbstruck that the next generation of family members sees nothing wrong with cutting me out of their important family occasion, as if I was an imposter in claiming my position on the family tree.

I am glad I’m going away today on my own vacation so that I don’t have to see pictures of the wedding and know in full color that I am repellant.  A pariah.

I know I’ll get over this.

I’m big on being resilient, especially when I don’t have any other choice.

I won’t hide my truth or change my own choices simply to get along.  I will be cordial if my father and I ever meet, as I always am, but I won’t be loving and I won’t be friendly.  I will not be forced to live his lies.

It’s been a long 3 months since I learned about the actual wedding date.  It’s been hard to keep circling this topic in my mind, endlessly examining my own behavior to see if I’m doing something toxic to the next generation, only to come back to the frustration that it appears my abuser is winning in dividing and conquering us.

Again.

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Fine.

As in, “If I have to tell you I’m ‘fine’ one more time, I won’t be responsible for the consequences”.

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** I have yet to master the art of the selfie, so this picture is the best I can do to illustrate just how ‘fine’ (and aggravated) I am. **

While I’m recovering from the congestion and cough engendered by last week’s “exotic” travels, I’m also busy juggling the finances trying to get the electrician to inspect and repair things at my home.  I’m also trying to wrap up details for Christmas before leaving town, as well as making sure I have the budget and details covered for my Christmas cruise.  Oh, and debating the cost of the mobile home skirting job with the handyman who has been such a big part of my life.  (Yes, I’ve an Eldon of my own, haha).

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Busy, busy, busy.  So, let’s slow things down by taking yet another nap.

Unfortunately, I have a holiday show on Friday and zip prepared for it.  Being unable to do everything, and having already used my stockpiled energy to entertain a guest over Thanksgiving has left me worn out and cranky.

I do keep reminding myself that I’m on disability for a reason, and that this inability to keep up and stay awake is part of why I need to accept my limitations, but it’s not easy accepting in my heart what I know to be true in my brain.

Whatever it is you’re doing, I hope you’re having fun and better than ‘fine’.

COPD Awareness

CBS Sunday Morning had a great profile on COPD Awareness following Thanksgiving.

One of the things that stuck with me the most was the key phrase that I heard with my Mom and again with myself.  “When you’re diagnosed, there’s a 3-5 year life expectancy”.

While that may be true for some people, I’m here to say “Phoey!” and to tell you to keep on fighting.

Not all versions of the disease are the same.

Not all sufferers with identical statistics for FEV or FVC1 are the same.

There is so much that goes into what you do to remain healthy.

What side effects are risked by the Rx’s you consume.

Whether or not you’re depressed (another side effect).

Whether or not you feel entitled to being healthier than you may be (thus, setting up a list of frustrations for you, that show up in your overall health as you’re busy fighting yourself AND the disease).

We are not our various ailments.

Rather, we are who we are and the challenges we face are just that – challenges.

So, do what you can when you can.  Rest when you must.  And take care of you while we learn about COPD together, and figure out what works to keep each of us healthier than not.

Katie Needs a Nap 2017

Don’t Help Me

LakeTahoeBoat2017

I love people.  I love my friends.  But, everyone drives me crazy.

Mornings are never good for me.  Even sleeping on a slant (so that my lungs fill up less), I have to spend a bit of time walking around clearing out my lungs.  Yes, it’s gross.  Yes, it’s unpleasant for me, too.

Take that show on the road, sleeping flat vs. on a slant, and the congestion will be aggravating.  That’s just how it goes.  And another reason why I don’t sleep in a hospital bed, or have a “slant” pillow when I travel.  It doesn’t help.  The only thing that helps, marginally, is sleeping sitting up in a chair, or on a slant.  Way too much hassle to deal with or even consider dealing with when it comes to having a few simple days of being “normal” and ignoring my “best solutions” to settle for “good enough” solutions.

But, I know what I’m doing.  I’m monitoring everything for infection or loss of functioning, and I’m doing what I can to ensure that I can remain as able as possible so that I can continue to go on adventures and not simply sit in a chair, waiting to die.

Medicine images

The above image was my daily start.

– Theodur 24 (breathing)

– Hydrochlorothiazide (high blood pressure, aggravated by the breathing meds)

– Vitamin E (to offset the side effects of the breathing meds on my eyes)

– Vitamin D3 (to offset the exhaustion caused by COPD and simply trying to breathe)

– Metformin (now 3 pills, as they don’t feel it’s having the benefits it should)

– Atavastin (cholesterol meds – a new joy in this game for staying healthy)

– Fenugeek (to regulate blood sugars)

– Marshmallow root (to aid in breathing, and to help the lungs fight congestion)

– Cinnamon (to regulate blood sugars)

– Tumeric (to fight inflammation, believed to be a root cause of systemic ill health)

– Milk Thistle (to fight liver damage / failure)

– Maca Root (to fight the hot flashes from menopause)

Then, as I struggled, because I was leaving a warm / dry climate and going to the woods, water, and higher altitudes:

– Allegra decongestant

– Xopenex (inhaler, which often causes more problems than it solves, longer term)

– Aspirin (aches and pains from arthritis and related medicine-caused side effects)

While I had way too many soda’s to keep my energy up, I monitored the output and also brought water with me to ensure that I protected my liver and stayed hydrated.  Adjustments have to be made to simply live without hassle, and when you’re traveling more adjustments have to be made.  Nothing major.  But, every adjustment impacts my state of congestion or wellness on a daily basis.

So, it was wonderful to have a friend here.  But, it was also a lot of work.  And a heck of a lot of explanations about how I’m doing everything I can to stay healthy.  And to hold my temper as I’m challenged / prompted to take even more meds, like there was some magic bullet that would fix my COPD and make me healthier for the trip.

More is not necessarily better, despite what our consumer-driven economy might make you believe.

More can be toxic, or self-defeating, as it triggers yet more complications with the base problem you’re trying to figure out how to fight to the best of your ability.

As we were driving around, I was subject to other people’s colds, perfumes, etc., any time we shared space with others.  Not a problem for me, as I refuse to become a militant.  I accept the fact that the real world contains germs, and that the real world doesn’t agree with me that zero perfume or added scents is anything but a marvelous idea.

I behaved.

When we went on a boat ride, I knew that it was 52 degrees, and that it would be a good idea to be indoors enjoying the view from behind glass walls vs. outside enjoying the breeze.  So, I did it, despite my wish to enjoy the day fully.

I know what I’m supposed to be doing to remain as healthy as possible, even while simply enjoying a day runs the risk of making me sick.

So, it makes me insane to have someone hovering.

Prompting me to take my meds.

Challenging me on whether or not I’ve taken “enough”.

Please.  Don’t hover.  Don’t help me.

I am on my best behavior in public, fighting my aggravation every minute of every day, trying to remain invisible as a sick person.  That’s my call, and the only way I know how to live.  Hiding in plain sight.

But, I’m fighting bone-deep aggravation and irritability 24x7x365.  I don’t need someone asking me the same question again and again so that THEY will feel better.

I don’t need prompting to get a handicapped license plate as an entitlement.  Trust me, my remaining active by NOT having that plate is a negotiable issue.  As is my laziness.  If I have to keep moving to remain as healthy as possible, then let’s leave the handicapped plates for people who are in pain and have trouble walking.  While I may be in pain and tired, my view is that a handicapped license plate means that I (specifically) shouldn’t be behind the wheel as I’m too tired to be able to do all involved.

Tired driving is similar to drunk driving, and I feel that I just shouldn’t be doing it.  I’m also hoping that an automated, self-driving car will be an affordable reality in my lifetime so that I don’t have to give up my independence.  Until we get to that point, my doc hasn’t taken my licenses, and I try and use common sense about when to be out and about.

I had a wonderful time going to Lake Tahoe, Yosemite and San Simeon.  Yes, I was pushing myself and risking my health.  But…

This constant coughing is my life.

This is as good as it gets.

Don’t “help” me, as you just don’t know how hard I’m working trying to keep up, blend in, and have a good time passing for normal.

 

 

 

Success.

It’s probably an oxymoron to consider winning an SSDI challenge a “success”, however, I’ll take it.

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I picked up the mail last night (I love having a PO Box – it ensures I won’t lose things inside my home because I don’t pick up the mail until I’m ready to deal with it).

Anyway, I grabbed the mail to find that social security accepted my explanation for the source of the various payments from my former employer, and has been cured of its misinformation which concluded that I had returned to work.

Hallelujah !

I still have to get through the fight with the former employer’s insurance company about continuing salary benefits, but the basic SSDI insurance coverage which was threatened appears to be ok once again.