Managing Expectations

Smaller Glass

I am very impressed by all that Russ Winwood can accomplish, as noted in his latest cycling adventure.  Despite working with only 26% lung capacity, he gets out and manages to accomplish things that I would never dream of trying.  That’s not to say that he doesn’t have exacerbations and challenging days, but to emphasize that he sets goals and is able to accomplish many of them despite suffering from COPD.

That’s kind of where I’m at with my version of the disease, too.

Also at 26% lung capacity, my ability to breathe and keep up varies from day to day and is largely based on weather conditions, how much rest I have gotten, whether or not I’m in pain in my neck, back and arm, etc.

Right now, I’m doing what I can to rehab my mobile home without being foolish with my physical safety as I try and save a buck.  I can still only work about 2 hours at a time before I need a break and a nap.  Today was pretty typical, though:

– Up at 6am, but unable to get my butt in gear due to gastric issues.

– Morning sinus headache, and fuzzy throat.

– Paid some bills, did some errands (went back home to pick up other things that I’d forgotten).  You know, a typical morning.  By 1pm, I’d gotten very little done that was on the original goal list or concrete, and needed a nap.  (Sigh.  I’m so tired of being tired!).

– Off to bed for 3 hours, and back up and about by 4pm-ish.  More gastric issues, and finally able to hit the road by 6pm.

… only to be stuck in traffic for an hour-plus trying to get to the new place during rush hour.

– Once at the new place, I figured out that I know diddlysquat about how to remove a damaged screen from a mobile home window (it wasn’t like any other screen I’d seen before).  So, we’ll put that aside and deal with the experts as the budget permits.

– Multi-tasking, I put in a load of laundry to wash, and it was back to painting the office / smaller bedroom.

One nice thing that I found was that it was blessedly cool at 7:30pm and beyond, which makes painting MUCH more tolerable.  (Duh!  Why didn’t I figure this out 2 weeks ago???).

Figured out that my new stopping time should be 10pm, if I’m working in the cooler evenings, as that seems to be when the lights on the homes around me retreat to darkness.

Back home by 11pm (because one needs to clean up their tools – the cleaning helper is driving me crazy by NEVER cleaning up after using my stuff, or actually putting my things away!).  Luckily, I figured out this evening (after fruitlessly searching for my tools) that a wooden paint stirrer makes a great spackling tool, so I will hopefully not give her the 3rd degree tomorrow when I try and figure out where my newest tool was tossed when she was done with it.

At midnight, I’m ready to have something small to eat (I know, bad diabetic – no food for 3 hours before bedtime), and head to bed so that I can get up and do this again tomorrow.

I’m racing the clock to get as much done as I can before the lino guys come on Thursday.  Fingers crossed that I can get both bathrooms painted before they arrive to replace those 2 floors and peel away the carpeting to expose the floors in 3 other rooms.

Hospice Transitions.

mel-dyer

As part of the 1,001 things that I need to accomplish, talking to hospice was high on my list as I need to figure out what happens next.

The conversation was quite entertaining in retrospect.

“So, you have 26% lung capacity and you’re on disability with COPD?”

“Yes.”

“But, you’re not on oxygen and you still do everything yourself.”

“Yes.”

“I’m sorry, you sound like exactly what we’re trying to accomplish for our “Transitions” outreach program, prior to going on hospice care, but you’re not sick enough.  I either need you to be on oxygen, or unable to handle the chores of your daily care.  I mean, you still drive.”

Clearly, my ability to be even remotely independent confirms that I’m not sick.

Who knew ?

So, I’m now going with Plan B and scheduling attendance  at an estate planning event (a freebie) by the same lawyers that I worked with to help me manage Aunt J’s needs when she moved here from FL.

Should be another interesting conversation, as I don’t have any real assets to speak of for them to handle.

Labeled. Fear of “Cheating”.

Responsibility

I am having to deal with the bogeyman of “loss of benefits income”.  To recap, I’m not receiving the funds due from my employer, so there’s a lawsuit going on to try and get me that which I am owed.  Not “entitled”, that hotbutton word, but OWED.  I paid into the benefits.  I was promised the benefits in the event of disability.  I am disabled.  I am OWED.  (Yes, I’m getting a bit militant on this topic).

I started this disability acceptance adventure, for lack of a better word, because of multiple car accidents that could have killed me or someone else.  3 car accidents in less than 9 months (with 2 happening in one week) was a warning that I was pushing myself too hard in order to keep up and pass for normal.

But, at the time I asked for a decision about whether or not it was time to be put on disability due to my numbers, I also asked my doctor a number of key questions, including:  “If I’m whining, please say so.  This is a hard topic to address, but I’m exhausted trying to keep up.”

I went on to say that I would like to be able to have the safety cushion of financial security (as disability benefits keep the wolf from the door), while also figuring out whether or not I could be allowed to work some other type of job and not starve to death.

There is a neat little provision in the Disability benefits calculator that says one cannot be forced to take another job if that job pays less than 80% of the pay that one received prior to going on disability.  It’s that “gotcha” that has my focus, as the only jobs that I’d likely to be able to accept have to be lightweight, and where I’m replaceable if I can’t come into work on any particular day.  You know, temp work.  Consulting gigs.

I get it, that people need a purpose.  People need to earn their money, so that they feel engaged in life.  I’ve done that in the last 42 years, and it does not take into account the loss of identity and freedom (financial freedom, especially) that one has to deal with if one is disabled.

With that in mind, I’ve done the calculations about what might be possible once I finish preparing and moving into my new home, and how much I’d need to make to equal what I am currently receiving on disability:

Earnings Goal - 2016 Disability

But, I’m sitting here unable to work at all, and make progress on that topic, until my lawsuit is resolved.  Due to a very nasty piece of litigation, Jenkins v Price Watershouse Cooper, I am forced to sit on my butt instead of coming up with a plan (once my move is completed) to find a new way to afford to live in my new home.

While another internet life friend made an amazing post on facebook yesterday about his ability to always refuse benefits despite being in pain and handicapped, I am not that stubborn or fortunate enough to have another 12 years worth of savings equal to that of SSDI to get me through to retirement without being reimbursed the money I’ve paid into for just this disaster – being on disability.

I don’t have a spouse that brings in an income and medical benefits to help keep the wolf from the door.

$28.8k per year doesn’t sound like much, until you don’t have it.  When you don’t have it, you can’t afford to live, you can’t eat, buy meds, play on the internet, etc.  You lose your place in society, and you fall through the cracks.

2015 Poverty Guidelines

While the chart above says I should be able to handle a family of 5 on my income, the reality is anything but when one lives in CA.  One of the highest costs of living locations in the nation, and where I chose to move for work and improved health way back in 1985.

So, my life is filled with fear right now.  Fear of failing.  Fear of my life being more expensive than I can afford.  Fear of going to the UK and being denied my (already denied) benefits because I choose to travel while I can vs. sitting and stewing in fear.

Life is for the living.  I will outspend my limited assets anyway, so I’m choosing to fight for my income so that I can find a way to keep on continuing to live, while also being cognizant that no one gets enough time in life to do all that they want.  This isn’t about medical science outpacing common sense (through more meds, stem cells, etc.), past the point of rationality.  This is about evaluating what is vs. what I fear things may become.

While downsizing my life, I’m also spending all my physical labor / mental rummaging time designing an argument that has yet to be launched by the lawyer (who says I must sit and do nothing or be denied my benefits) to say that I want to work, but that non-payment of my matching benefits is preventing me from finding a new career or having a stem cell treatment.  It takes money to make money, is my argument, and I’m on a precipice of financial poverty because I dared to step back and say, “hey, somebody’s going to get hurt” if things don’t change for me on the workfront.

I get it, that many people “cheat” the system who should be working.  I get it, that I question my own motives to try and understand whether or not I can work and am just lazy, or whether or not my disability is as severe as what I’ve seen it to be.

The biggest answer I have for myself is this:

  1. I asked for work options, shorter hours, flex time, different job.  Denied.
  2. I *do* want to work and earn my money vs. begging for handouts from my benefits.
  3. I *don’t* want to jeopardize my lawsuit standing because I’m frustrated.
  4. I’m not getting paid anyway; the SSDI folks don’t say I can’t travel if I feel it’s ok.

No answers here, but I do know that I will be pursuing this issue with the talk therapist and the SSDI department of re-employment at some point, as soon as my lawsuit is resolved.  For now, I simply sit in fear.  Waiting to see what happens next and hoping that I’m not judged to be a “cheater”.

Trying to justify to someone else how I can do things some days and not others is immensely frustrating, and I’d rather tune them out (adding to my anxiety) while I concentrate on getting situated in the new place and a more affordable living situation out in the boonies where I can then re-assess what might be possible if I were to declare myself disabled in my job hunt and try and get employment through that option.

I don’t want to burn the safety net that the SSDI documentation proves I need.

But, I also don’t want to have to try to work and end up burning my house down around my ears because I tried and failed and lost access to financial benefits that I’ve paid into during these last 42 years of working.

No answers here.  This is just what I’ve been thinking about as I’m trying to get ready to move.

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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Exhausted. COPD sucks.

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Sucks literally as well as figuratively.

Doing what I can to get through the mobile home rehab and not run out of money, but it’s going to be a close thing.

Having a hard time running two households in various states of flux, and things are dropping by the wayside as I push myself to the point where brain fog takes over.

I’ll be back as time, and my energy levels, permit.

Tired. Lollygagging.

Pooped - day 1 summary

Not a lot of energy today, but I’m happy to confirm that I slept like a rock last night.  Planning the sea salt treatment for the end of the day, when I was feeling like crap after only 4 hours of so-so effort was a great idea.

Today,  I can see letters and whole words missing from the things I’ve replied to or posted on facebook, so while I can pass for normal, it’s going to be a very light day as I’m not on top of my game and don’t want to push it.  (And, thank heavens for the “edit” button so that I can go back and fix my mistakes in a few hours, once I’m able to actually see them).

Being short of oxygen makes it challenging to explain why one can do so much, and yet not be firing on all cylinders.  In my case, the fastest thing to give me away is that the stuttering increases (it was trained out of me in childhood, but always comes back in times of stress or exhaustion), or I lose the ability to care / form complete thoughts because I’m just so tired.

Clearly, if the insurance company saw my efforts yesterday, they would happily brand me a “faker” and continue to deny me my benefits.  Since they are denying them anyway, and the doctor agrees that I am ok to keep pushing myself (and should push myself as much as seems reasonable and safe to do), that’s what I choose to do.

Got an hours nap in the parking lot of the pizza place before going in to get lunch and then head to the salt treatment spa.  As long as I’m not too proud to sleep in the car (and can find a shady place to recoup and recover), it’s all good for passing for normal despite the challenges.

Surface – it’s expensive

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Today’s writing challenge, Daily Prompt: Surface, came at a perfect time.  I’m obsessing over the SURFACE of my roof, my future shelter from the storms and travails of life.  My home purchase is seriously denting my “fun” budget, so I’m juggling multiple demands on my limited funds, trying to fit everything in before I run out of time.

In my case, I’m dealing with being unable to do anything substantial for myself because, of course:  a) I’m on disability, and b) the lawyer says I must sit and do nothing.

Seriously?

I’m the daughter of a plumb-trician (Mom would try and fix anything before calling a plumber or an electrician, as calling either would mean that someone [usually her] would go without necessities like food or heat for an unknown period of time).

I’m also the daughter of a master carpenter, so even though being anywhere near the refinishing / construction zone would make me sick as a dog, I love working with my hands and refinishing furniture, painting things, and generally am all-around-capable when it comes to basic home repairs.  Screw the impact on my health !  (Or, something of that nature, until I smartened up and learned that my triggers served a purpose to protect my health).

Being a female in a man’s world, I’m also used to someone trying to take advantage of me because of the generally held belief, still, that “wimin folk ain’t supposed to know nuffin bout doin’ no man’s work”.

This belief structure is a serious irritant, as I’m a liberated female who came of age during a time of change, the 1970’s and early 80’s, and I resent being told that some big, manly man should do the work for me.  I just need to hand over the bucks, with a penalty markup, for being a helpless little woman.

Yeah.  Ri-i-i-i-ight.

So, in this case, I paid $150 or so for the roof to be evaluated, and was informed that it was a new metal roof, installed within the last 10 years (good), but which needs work to seal it from leaks.  $1,740 worth of repairs.

Needless to say, with my background in procurement for facilities and construction jobs, that pricing seemed high, and I wasn’t going to stop until I got 2 competing bids.  (I really want to do the work myself, as I’ve also priced out the materials, but being lectured by the lawyer for doing more than I should, plus harming my health, has me making 2nd and third guesses about what’s the right thing to do vs. the cheapest thing to do.  Sweat equity I got – energy?  stamina?  Not so much).

However, I looked at the local forecast for this sort of job, and my estimate falls squarely on the “more expensive” side of the bell curve of costs, reinforcing my belief that I’m being taken advantage of because of my gender.

Repair Costs - roof resealing

If 28 thousand homeowners in my zip code / general area can get roof repairs done for around $1,000 on the max side, then it behooves me to look beneath the surface of the quote to make sure I’m not getting taken for a ride.

Until I hear from the new guys, I don’t know whether or not I’m going with the original guy’s quote.  But, it behooves me to challenge a 1 year warranty on work that should also carry a multi-year warranty.

Surface.  It’s all so shiny and pretty, but digging beneath it is where the value lies.