SYW Week 36 participation

Thanks to Embeecee, of SparksFromACombustibleMind, I’m playing along with her game, Share Your World, Week 36.

If you were given a boat or yacht today, what would you name it?  (You can always sell the yacht later)

Mistral.  I think my life is chaos, so Mistral, king of ocean storms, seems like a fitting title.  

Which of Snow White’s 7 dwarfs describes you best?  (Doc, Happy, Bashful, Sleepy, Sneezy, Grumpy, Dopey) Plus what would the 8th dwarf’s name be? 

Oh, too easy !  Grumpy.  “Sleepy” is my back up choice, and since I’m a medical research fiend, “Doc” could also apply if we were talking about wanna-be’s.  But, “Grumpy” covers all bases.  

Name a song or two which are included on the soundtrack to your life?

I would do anything for love (but I won’t do that)

More than words

I was thinking maybe Springsteen’s “Meeting Across The River/Jungleland“, as I love the piano bits, haunting sax solo and the struggle to survive in the lyrics, but that underlying storyline is just too real right now to be applicable, because this is supposed to be fun.

Complete this sentence:  I like watching…

Wildlife.  Birds.  Fish.  Butterflies.  People (if all else fails).  As long as there’s some activity surrounding me from the local flora and fauna wildlife, I can sit for hours observing.  My new place is teeming with hummingbirds, so it should be fun to see how Ms. Katie reacts once we get all moved in and parked on the screened porch on a sunny afternoon.

Bonus question:  What are you grateful for from last week, and what are you looking forward to in the week coming up? 

Last week – surviving.  My friends helped me keep my sanity, despite my worst personality traits, and I’m grateful to them for all their help despite my control issues.

If we start the week coming up with tomorrow, it’s going to Santa Cruz to camp out as a fundraiser for cancer research.  Should be great fun with friends and kids, and we’ll try our best (or worst) to build a winning sand castle.  If nothing else, it should be fun for a good cause.  Tomorrow night’s band is a Journey cover group, so it should be excellent music, too.

Let them eat Cake

Today’s Daily Prompt:  Cake

I’ve been struggling mightily with the powers-that-be who wish to define me with their own version of handicapped.  Incapable.  Invisible.  Irrelevant.

It was with reluctance that I began exploring the cause of my multiple car accidents, and the related safety issue for myself and others, with the end conclusion that I should be on permanent disability.  My numbers were below the federal disability level for being able to breathe, and my pushing myself was like giving a drunk driver the keys and telling him or her that they were ok to drive.  Crazy.

Having been through this journey for the past year, I’ve come to the conclusion that I’m dealing with a Marie Antoinette-wannabe in the shape of my HR department (employer), as there is no way for me to find a path back to work that is practical for both myself and my employer with their current “where’s the wheelchair?  where’s the seeing-eye dog?” mindset that I must be goldbricking.

Transitional Return to Work

While I have been resting and doing what I can to rebuild my reserves and avoid exacerbations as COPD continues to throw me curveballs, the reality is that I went off work with a breathing capacity of 31-32% of normal capacity, and as of now, I’m down to 26% capacity.  Not good.  Especially not good when one realizes that is in the Summer, when I’m at my best because the weather is at its driest.

When contemplating the whole question of quality of life, options to figure out what I *can* do in a sustainable manner, endurance, and related exhaustion, the reality is that there is no clear guideline.  I need my employer to truly work with me to explore options and set reasonable expectations about what I *can* do to work for them, vs. simply being told that I must “find my own solution”, or quit.

I’m stuck in the middle of a lawsuit with my employer, because they refuse to pay me the matching salary benefits I’ve paid into.  While I’ve launched a lawsuit for improper treatment about paying out my benefits, the reality is that is a whole lot of trouble, and things would be easier if they were really invested in having me find a way to return to work.  Part time.  Flexible hours.

Something that accommodates the fact that I don’t fire on all cylinders when I’m not getting enough oxygen.

Something that would pay me the matching salary benefits so that I could try the stem cell treatment and see if it would enable me to return to full-time work.

You know, all the things the matching salary benefits were supposed to make possible, if one were disabled while working for this employer.

PassingForNormal

While I can color my hair and update my wardrobe to hide the ravages of time that impact everyone, at some point, regardless of their level of health, the reality is that COPD comes with serious underlying complications that impact each of us differently every day.  And which get worse as one ages.

In my case, its energy levels.  Lack of 100% oxygen saturation means that I deplete my energy over a period of 2-4 hours, and then am in pain if I keep on pushing myself, and also need a nap.  The need for a nap becomes more urgent the longer I put it off, and it then becomes a safety issue if driving is involved.

Co-morbidity with diabetes being a complication of my COPD medications means that mainlining sugar or carbs (a candy bar, a soda, a donut) to give me an instant energy hit, just takes away my ability to think clearly and drains my energy that much faster.

While protein is a solution to the energy drain, that’s also more expensive than a simple candy bar or carb, and we’re back to looking at my budget and lifestyle choices on my now limited income.

Because I’m not being paid the additional benefits promised, I’m stuck moving further away from my job site in order make the money I’m receiving from Federal Disability stretch to survive and keep a roof over my head on the limited benefits I’m being paid (and which move shouldn’t be an issue for a global company, but is very relevant when they insist on butts in chairs for some jobs).

Because I’m moving into the boonies, it also means that cerebral jobs which pay well are scarcer than hens teeth, and pushes me back into the challenges of trying to do a minimum wage paying “physical” job which will deplete my energy faster than a seated job.  As I’m reading about my ability to work options, it also seems to indicate that I may be “abandoning” my job by moving someplace cheaper in order to survive.  Another loophole that I don’t want to even consider as I try and endure my current reality and find solutions if my lawsuit isn’t won.

I’ve been looking at FlexJobs, Ticket to Work options, and everything related to “recovery”, all the while knowing that I will never *recover* from my disease.  COPD stage 4 is an end of life situation.  While I still have plenty of life left in me, as long as I can keep from triggering an exacerbation, the reality is that my quality of life will continue to degrade.

Employers are supposed to offer “accommodations” to encourage workers to remain on the job, or to encourage disabled workers to apply for employment.  However, the fine print in that statement is that the “accommodations” only have to be made so long as they don’t impact business operations for existing employees.  If they cannot do so, i.e., such an accommodation may come with a financial or liability risk, then the employer doesn’t need to make any accommodations at all.  That’s where I’m at in terms of trying to figure out where my life takes me next in this adventure to survive.

Not quite handicapped in a definable, quantifiable, easy-to-fit stereotype so that anyone can understand what I can or cannot do, I linger on the sidelines, wanting to work, have relevancy, and improved financial stability.  Malingering, in some eyes, because I’m successful in staying out of the hospital, but not well enough to at work, and labeled as too young to retire.  42 years spent working is irrelevant when one is neither fish nor fowl for being able to be categorized, packaged and resold for the benefit of both society and myself.

So, I thought today’s prompt was very appropriate, “Cake”, as I’m dealing with the realities of not having enough bread and being chided for ignoring the cake that I don’t have, either.  Crazy, crazy, crazy.

Cake Eaters

French cycling adventure

Can’t get enough of Russ and his motivational adventures.

COPD ATHLETE

Imagine a world where people with respiratory disease were active and were able to redefine how lung disease is treated. That world may have been unthought of in years gone past but there is a ground swell of patients fighting the norm so they can have a better quality of life.

At the time of writing this blog I’m flying via Singapore to France for a cycling event I hope will give fellow patients hope to be able to achieve a better quality of life. This day the 27th of August also marks the start of another event, 14k in 14days. Why 14k in 14 days? That’s the time I’ll be away travelling and meeting fellow patients in both France and the United Kingdom to talk about the benefits of an active lifestyle. This is the first of many events COPD Athlete will be organising in the future as…

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Nominated. Homework time.

(smiling)

bk-cat-bl-sea-revisited

Another blogger, “Carabiensplash“, nominated my friend, Embeecee, the author of “Sparksfromacombustiblemind” for the black cat / blue sea award, and I – in turn – was nominated as a “blogger who strives to write for everybody, and no matter how many viewers they get, make an impact on the reader”.  That’s some pretty heady stuff right there, and very gratifying to know.

As part of accepting this award, there are rules to follow for nominating others.  While I’m not much on following the rules, here they are:

  1.  Anybody nominated can nominate up to seven other bloggers. 
  2. Anybody nominated answers three questions. The questions you ask while nominating can be any three questions. If any of the questions asked are offensive or one simply does not want to answer, it’s all good.  You still get the award.  You put in the work, right?  

As with others, I’m not big on putting people on the spot (hey, even my snarkiness called this “homework”, even though I enjoy the camaraderie of being a recipient and tagging others).

So, if you’re nominated and you care to play along, come on in !  The water is warm.  In my case, I’d re-nominate Embeecee, so I’ll skip that as the idea is for me to pick other folks to join who may not be someone you normally read.  If you read me, I’m hoping that you’re a regular reader of Embeecee’s, too, as she’s got lots of interesting things to say.

Therefore, my nominees are regulars to writing, as well as some writers who aren’t on here much anymore, but whom I still follow in the hope that they will pop up with something new to share::

2.  “Two Rooms Plus Utilities” by livinginalimitedword.com

3.  “Wheezing Away” by wheezingaway.com and who also writes as billydursens and crossdove-writer

4.  “COPD – MY JOURNEY & YOUR INFO HUB” by Gina Apple

5.  “Zebra Writes” by Sebsharpe

6.  “Police Commander” by policecommander

7.  “Problems with Infinity (Confessions of a Delusional Maniac)” by problemswithinfinity.com

As a nominee, the first three questions Embeecee was asked to address were:

  1.  Why do you blog? As in what do you get out of it, what does it do for you?
  2. What is your favorite thing to do? It can be whatever you enjoy (keep it clean though!) For example, activities like -camping, swimming, parties, driving, cooking, cleaning (? Yeah, I know some people…). Or just relaxing stuff like watching TV, reading, sleeping. Why is it your favorite?
  3. Where is the best place that you’ve ever been? Why?

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I will choose to answer those shortly, while also devising three (3) questions for any of my nominees (including Embeecee) who may choose to play along:

  1.  If you could live anywhere in the world, where would it be, and why?
  2. If you could have any time back in your life to do over, when and why?  
  3. If you could do anything differently, what would you change, and why?  

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Meanwhile, the final three (3) questions that Embeecee asked of me were:

  1.  What is the wisest thing anyone ever told you?  Do you still quote it back to other people today?  Do you follow the advice?
  2. Do you like cats or dogs better?   No right answer for this one, I’m just nosy.
  3. Coke or Pepsi?   Or are you a person who prefers neither and thinks the whole ‘war’ between these two colas is a publicity gimmick designed to get us to drink more of our chosen beverage?  Tell us what you do like to drink!

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Pick anything you like among these 9 questions to be your three questions to reply to, or choose to reply to all nine(9).  It all depends on how much time you have, and how much you like questions and answer sessions, LOL.

Meanwhile, my answers to the above are as follows (please ignore alignment issues, this tool was driving me crazy today):

  1.  Why do you blog?  Purge.  Absolutely use it to clarify my thoughts, release my anger, write any sadness out of my system, and chronicle my journey through life as I battle worsening health and “the man” for getting what I’m owed (because I paid into it for 42 years, thank-you-very-much) from “the system”.  It helps to keep me calm, and keeps my therapy costs and bail bonds low, LOL.

    2.  What is your favorite thing to do?  (I can’t pick just one – sacrilege!).  I’d have to say that I’m a fan of anything involving water.  Fishing.  Snorkeling.  Sailing.  Sitting on the beach.  Wading.  Picking up shells and turning over rocks on the shore.  If the sun and sand and fresh air are involved, I’m your gal.  Although I must agree that sleeping is also high on the list.  Sleeping and eating.

3.  Where is the best place that you’ve ever been and why?  Oh, this is tough.  I’d have to say that it’s Great East Lake, NH, because that’s where I first learned to explore the world in between surgeries and hospital stays, and where I was first let off the leash to just be a kid and enjoy myself.  The sound of early morning reveille from the YMCA camp on the corner of the lake always started my day with a smile, and the joy of skinny dipping after dark and chasing fireflies before bed helped to end Summer days with a smile.  There’s never a bad day at camp.

4.  If you could live anywhere in the world, where would it be, and why?  A boat, because there’s never a bad day on a cruise, and you wake up every day someplace new and wonderful, with adventures awaiting you.  And, all your stuff stays in the same place, so there’s no extra work for moving and packing, LOL.

5.  If you could have any time back in your life to do over, when and why?  I was a brat, so I know I need to make amends all over the place.  But, I don’t get the concept of do-overs.  Everyone did what they could with what they had.  Some parts of my life were really rough, and while I don’t regret them (as they made me stronger), I don’t want to try and fix anything as I like the person I eventually matured into being.  

6.  If you could do anything differently, what would you change, and why?  (See above answer, I’ve kind of co-mingled the questions).  

7.  What is the wisest thing anyone ever told you?  Do you still quote it back to other people today?  Do you follow the advice?  I’m going to have to divert to Gene Roddenberry for this one (yes, I’m a Star Trek nerd).  “That which doesn’t kill you makes you stronger.”  I use this all the time in encouraging folks to rise above the damage they’ve endured and be resilient.  And, yes, I try and follow this advice.

8.  Do you like dogs or cats better?  I like cats and dogs equally, but… cats are less needy and I’m lazy, so I like the low-maintenance aspect of cats.  Plus, more landlords accept cats that won’t accept dogs.  If I had to answer about what I like best, though, it would probably be birds or fish, because we’re not really interfering with who they are when they are pets, and I enjoy bringing a bit of the wild indoors.

 

9.  Do you like Coke or Pepsi better?  Pepsi, but I’ve pretty much given it up unless I’m eating out.  Right now, I’m mostly Dasani 24×7, even when dining out, which I believe is a Coke product, LOL. And, yes, the cola war is a publicity gimmick as the only time I cannot tell the difference is when I get a fountain soda (the best) or Mexican cola (either Coke or Pepsi) with real sugar cane vs. corn syrup sweetener.

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Thanks for playing along for anyone who choses to jump in.

It was awesome not to think…

Frank Somerville

Frank Somerville is a newscaster on a local channel, who has taken to facebook and social media with a real talent for telling human stories.  You know, what “People” was originally intended to chronicle, but which has now become a single-story side note vs. its main raison d’etre of all celebrities, all the time…

Today’s Frank Somerville story grabbed my attention (because my view of the world is all about my battle with COPD, my battle with my employer for my benefits or my battle with the useless landlord – me, me, me!) when the Mom in the story wrote, “it was awesome to not think about cancer for the day and enjoy each other“.

In my case, I’m really frustrated with trying to fortify my life with an affordable living situation despite the impact that COPD is having on my life.

Today, I actually opened the mail.

Yes, I am bad and only open the mail about once or twice a month, if that.

But, the financing of this fight means that I have money, a limited amount of money, and am fearful of running out of funds or exceeding my ability to care for myself as my health worsens. There is not a moment of any day that I am not thinking about how to survive this battle, as well as still enjoy life.

So, the insurance company’s failure to pay my matching salary benefits (approximately $6k per month) is particularly troublesome.  If I had that money, I’d be ASSURED that I could buy a really decent mobile home and make the monthly payments.  If I had that money, I’d be ASSURED that I could afford my treatments and still eat.  And put gas in the car.  Maybe buy a book or two.  Have the experimental stem cell treatment.  Travel.  And on and on and on.

Everything in my life circles around this disease and its impact on my life as I’ve had to stop working.

– Can I exercise  (i.e., how’s my shortness of breath today – do I feel capable)?

– Can I play mini golf (is it too sunny / hot, too breezy / cold)?

– Can I go and check out a mobile home and not get sick?  (Depends on the conditions)

– If I go bowling once a week to try and stay moving and healthy, will that be used against me by the insurance company, should they ever be compelled to pay me my past-due benefits?

Don't look sick

There is not a day that goes by – both before leaving work and after being on disability – that I don’t think about this disease and its impact on my quality of life.

There is not a day that goes by that I don’t try and pass for normal, all the while trying to figure out how to maintain my quality of life and not let it slip away through laziness, poor choices, or simple tiredness from the battle.

However, due to the latest strictures from the lawyer, it’s making me feel like a faker when I’m anything but faking.  I worry about cameras everywhere, taping my every move, trying to provide evidence that I’m not as sick as my COPD says I am… all because I refuse to sit still and I continue to try and maintain some normalcy in my life.

Truly, I miss the “old” me – the one who didn’t have to worry about affording this next stage of life in dealing with a chronic illness.  The one who hoped for a simple heart attack to end it all, or that I just wouldn’t wake up one day.  Those options didn’t happen, so now I’m in the fight of my life because I continue to live

I miss the before me

I want to be able to make plans and keep them.  I want to be able to look forward to going to England and seeing Stonehenge. Maybe adding in a day trip to Ireland or Scotland.  Instead, I am sitting her OCD’ing over all the restrictions from the lawyer and trying to change the rules of the game so that I can get what I paid into and enjoy life while it comes closer to its end.

Believe me – I *know* I’m not 67 years old and not able to retire, legally, without a fight or facing starvation for quitting early.  55 is way too young to be HAPPY to be moving into a senior park.  55 is way too young to be looking at 80 year and thinking, “Yes!  I’ve found my peers.”

The biggest challenge with this latest episode of dealing with my version of COPD from my birth defects is finding happiness despite the challenges.  With letting go and trusting that things will work out – despite my track record with that concept, LOL.

So, I’ll close this whiny post with the reminder that my greatest goal in life is to forget that I have this disease.  To distract myself with anything that I *can* do vs. focusing on what I cannot do.  Any other choice would simply drive me insane, as it appears to be trying to do when dealing with the lawyers…

Happiness Secret

 

 

The Wolfman

image

Well, today’s silliness involves auditions for a new Wolfman at my childhood haunt,  Clark’s Trading Post, located along the Kangamangus Highway in the White Mountains of New Hampshire.

Click here to read the full article on the Wolfman Auditions.

There is a passing reference to  COPD sufferer (a former Wolfman), and how he’s managing to stay involved in the fun despite the ravages of COPD to make one’s world smaller.  I was very saddened to see he was only 58 and on oxygen and in an electric wheelchair, but also happy to see that living in snow country (i.e., the meaning behind the name, the “white Mountains”), that he’s continuing to get out and about despite the weather challenges so common to New England, but especially to New Hampshire’s lake region.

It just goes to show – life is what we make it.

Gina Apple – interesting COPD blogger

First, let’s start by giving her a round of applause for sharing her story.

Applause

Next, let me give you a link to her blog so that you can check out her writings, too:

Gina Apple

And, let me show you the image on her website that reached out and grabbed me to confirm that we were sisters from another Mother:

Gina-ApplesBlog

Seriously.  Who could not look at this self-portrait and know that they had found another steriod-impacted twin, even if we’ve never met in life?

While I have a bunch of benign tumors in my big old pot belly due to the steroid use as a child, it was very refreshing to see what amounts to a self-portrait of the risks and rigors of using steroids posted on her blog.  Especially the adrenal tumor, too !

While Gina lives outside of the USA, so her benefits are different, it’s been wonderful to see how active she’s keeping, and how she’s been able to learn the system to make it work for her reality.

If you have a minute, please check out Gina’s blog – especially if you, too, are struggling with COPD and its residual effects on your life.