Demoralized

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Things will get better given time.  Right now, though, I can’t seem to get out of my own way.

The lawyer has taken up residence in the back of my brain, not yet quitting my case (although he earlier threatened to do so), and he’s making me crazy challenging everything I know about myself and the disease because I don’t fit his expectations for what “disabled” looks like.

Into this pity party comes life, and I must thank Russ Winwood for his latest blog as it was just the kick in the pants I needed to remember to get out of my own way:

For those who question my diagnosis!

Like Russ, I’m dealing with doubters and distractions from personal challenges to my routines and exertion efforts because I’m not supposed to be able to do the things I’m doing with only 26% lung capacity.  And yet, I do.

I don’t have any magic beans.  I don’t have any silver bullets that will make COPD’s impact on my life go away.  I can just do more (and less, compared to Russ) when looking at the bell curve of what’s possible for my level of this disease.

People should be happy for me to be able to not be on oxygen.  Not be on a scooter.  Not be totally dependent on caregvers for help.  And yet, they are not.  The, “You don’t look sick enough” challenges continue…

While I do struggle, for many people I’m not struggling enough. I’m not visibly sick enough.  I’m not incapacitated, so I should keep on working until I can’t do anything at all except sit and breathe for 24 x 7 x 365.  Or, kill myself or someone else because I’m trying to keep up and and shouldn’t be behind the wheel due to my level of tiredness with this lung function.

My ability to push myself for 2-8 hours in a day without causing injury to myself or others seems to be an indication that I’ve been misdiagnosed.  That the numbers are wrong.  That I’ve somehow found a way to cheat the system to fake having COPD.

Using my fitbit (a birthday present to myself) shows exactly how things go for me for activity levels:

Friday, 9/23:

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It took forever to get the fitbit out of its package and set up, but by the end of the day, I had the hang of it.  (The goal is 250 steps in an hour – you can see how seldom I reach that goal).

Saturday, 9/24 – a friend was helping me paint, which also helps kick in my competitive genes:

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As you can see, better levels of movement, and some actual “burn” time (the yellow spikes of activity around 4pm – I believe we went to lunch, LOL).

Sunday, 9/25:

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As you can see, more down time today, as I’d found the lawyers email, saying I was “too active” and needed to stop or quit my lawsuit (major downer, putting me into a funk, and causing way too much time to be spent on the computer getting back to him vs. being over at my place painting).  Another friend came to help me today, so I was able to get my overall steps up, and show some yellow “burn” time about 3-3:30, but I was still wiped out by 4pm.  The friend was gone, and I was back to being sunk in a funk, doing clean up and heading home.

Monday, September 26:

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Planned paperwork day, attending a seminar on health care proxies, disability and estate planning.  Did some packing, but mostly waiting to hear back from the lawyer about whether or not I’d been fired from my own case.

Tuesday, September 27th:

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The fire in the Santa Cruz Mountains (near my new home) puts crud in the air, keeping me away from that location in order to be healthy, plus the need to take it easy today doing light packing so that I will have energy tomorrow for going out in the evening, shows up in my level of movement.  Sad.

So, today, I am re-energized by Russ’s post.  I am determined to get things done and get back to my 7k+ goal for steps every day, despite the lawyer’s raining all over my parade.

Life may get me down, but I refuse to remain demoralized for long.  There is nothing and no one that controls my attitude problem but me, and today I am choosing to be resilient and get on with life despite those who would tie me to an early death through preventing me from trying.

I’m not dead yet, so I will continue to try my best to find the joy in each day, and ignore the Donny Downers of the world.  Movement is life, and I can’t be anything but what I am – someone who is full of life despite my birth defect and related diagnosis.

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TEDx Aspirations

disabled-stereotypes

Paul Hunt wrote a book in 1991, “Stigma”, which I found out about while researching disability and the challenges I’ve been facing since I’m no longer able or willing to hide in plain site, passing for normal.

While I have yet to hear back from the lawyer about his outrageous claim that I am clearly disabled but “too well” for him to represent me in my case against my former employer, I’m filling the back of my brain with thoughts and images about what has to happen next to enable me to have a life.  A quality of life worth living vs. simply enduring.

Paul Hunt hypothesized that it was not the impairment that kept people back from being all that they could be, despite their handicaps.  Rather, he felt that there were a series of social constraints imposed on people with disabilities which allowed others to discriminate against them with impunity.

Very similar to being a working stiff, and being sidelined once one reached retirement age and yet they had not amassed a large amount of money to supplement their social security payments kept in trust after being deducted from their paychecks for years, the shock of suddenly being “old” or “less able” is very similar to the shock of suddenly being unable to pass for normal, and acknowledging our level of incapacity.

Similar to a transgender person, deciding to go public and face the doubt and ridicule of others for simply claiming that they are in the wrong body, and cannot live as their assigned at birth gender any more, a person with birth defects which are disabling and who can no longer hide their challenges is also no longer able to pass for normal.

Each are handicapped, and subject to a variety of discriminatory perceptions and judgements by society as a whole, but especially if they don’t have a seeing eye dog, cane or wheelchair and “dare” to claim that that they disabled and can’t keep up with the norms.

America is prejudiced.  Always has been.  Hopefully, it won’t always remain that way.  But for now, disabled people face attitudes and policies which deny equal access to opportunities – for employment and for fun – and thus their lives become a trainwreck of trying to subsist on benefits that couldn’t keep a cat alive, never mind a cat with an illness.  Trying to remain upbeat while also being challenged to “not do too much”, to “not exert themselves” is a recipe for disaster – both in terms of inclusion in society, as well as for that individual’s mental health.

Your five year old dressed up as “Grandma” may be darling, but for those of us dealing with the reality of a halting gait, or a walker, it’s anything but endearing.

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Do I want you to take your child’s photo off facebook?

Do I want you to sanitize your imaging?

No and no.  What I want is accountability.  An acknowledgement that many of us can do more than is “recommended” or “allowed”, and that outside restrictions on someone trying to find a way to survive is not reasonable nor practical.

Especially when we’re dealing with an aging Boomer population.  A population which is used to earning their way and enjoying the fruits of their labors.  A population which very much resents the infirmity that may come with age, despite our best efforts, and which hits us all in different ways at different stages.

Still thinking this issue through, but I’m hoping that I’ll get a book or a TEDx talk out of it at some point, LOL.  I’m nobody’s idea of a cheerleader, however, I’m not dead yet, and I refuse to be a quitter.

My middle name is “resilient”, and I will not be kept down just because some lawyer is too lazy to do the necessary work to understand that I am more than a stereotype of COPD impairment.

Like the aggravation of of the fictional Tyrian Lannister character for dealing with the world that undervalues him because of his small stature and physical deformities, I am going to find a way to survive, ethics intact, despite the physical challenges of my reality.

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COPD Patients in France

Cannot say often enough about what a fan I am of Russ’s efforts to inspire others to LIVE despite the challenges of their COPD diagnosis. Check out http://www.COPDathlete.com if you aren’t already a fan.

Here’s his latest chapter for participating in a bike tour through France. Amazing.

COPD ATHLETE

It’s been just over three weeks since I cycled with other COPD patients in Hyères in the south of France to raise awareness for this horrid disease. It was wonderful to see such inspiring individuals such as Daniel Cloix who completed the event whilst using his portable oxygen device. Daniel is a great example of a person who does not let his disease define him.

daniel-cloixArriving in Hyères

From the moment I arrived at the resort where we were all accommodated, I knew I was surrounded by some very special people and while there were some language barriers, we where able to communicate quite successfully. Gathering for dinner on the second night we were all inspired by the musical performance of Daniel Antoine whose skill on the keyboard was matched by his amazing voice. It was an emotional experience as Daniel has chronic lung disease and performs while using supplementary…

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Daily Prompt: Pretend

via Daily Prompt: Pretend

Oh, the timing on this one was perfect.  I’m likely to be fired from my disability case because I won’t pretend to be less well than I am.  I am busy trying to be the best that I can be, every day, as to stop moving is to die.  It’s just that plain and simple.

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As one of my favorite movie lines goes, “Nobody puts Baby in a corner”.

Well, that’s how I feel about being told that I have to pretend to be less.

Less well.

Less capable.

Less vital, as my life slowly slips away with my energy levels, my congestion increases as my lung function declines, and I’m told that I must just sit and exist by people without a medical degree, and who have ZERO idea about the hills I’ve already climbed, never mind my impatience for failing to try.  There is nothing more boring in life, than sitting around. But adding in a need to play act unwellness?  Crazy.  Never going to do it, or I would have never gotten this far in life, despite my birth defects.

Frankly, if I have to pretend, then I’d rather do without (whatever it is that you want me to pretend about in order to obtain the goal).

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In the words of one of my favorite self-hazardous people, P!nk:

“Try”

Oh oh

Ever wonder about what he’s doing?
How it all turned to lies?
Sometimes I think that it’s better to never ask why

Where there is desire
There is gonna be a flame
Where there is a flame
Someone’s bound to get burned
But just because it burns
Doesn’t mean you’re gonna die
You’ve gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try

Eh, eh, eh

Funny how the heart can be deceiving
More than just a couple times
Why do we fall in love so easy?
Even when it’s not right

Where there is desire
There is gonna be a flame
Where there is a flame
Someone’s bound to get burned
But just because it burns
Doesn’t mean you’re gonna die
You’ve gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try

Ever worry that it might be ruined
And does it make you wanna cry?
When you’re out there doing what you’re doing
Are you just getting by?
Tell me are you just getting by, by, by?

Where there is desire
There is gonna be a flame
Where there is a flame
Someone’s bound to get burned
But just because it burns
Doesn’t mean you’re gonna die
You’ve gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try
Gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try
Gotta get up and try, and try, and try

You gotta get up and try, and try, and try
Gotta get up and try, and try, and try

No, I’m not being smart.  No, I’m not keeping my eye on the main chance, $$$, and benefits that I am owed because I worked for 42 years and paid into them while fighting to pass for normal and hide my disability.

After 4 car accidents, 2 of which caused major damage and necessary repairs to my car, I’m tired of lying to myself.  I can’t pretend I’m able to pass for normal any more.  But, I also can’t pretend to be dead.  As long as I have breath in my body, I’m going to try.

Choices

Trying my hardest

Very frustrated with the lawyer this week.  It seems that my lawyer is no longer with the firm, and no one bothered to tell me.

Thereafter, I was working on my declaration for the final appeal of my benefits for matching salary, and I set the cat among the pigeons.

Apparently, I am “too well” or “too busy” to be on disability according to my latest lawyer (from that same firm), and I was warned as follows to cease and desist in order to have them keep on representing me:

“There is simply no way to explain away your current level of activity.”

“Your level of activity is problematical for you and your claim.”

“To be clear, your level of activity is in no way incompatible with disability itself, or with COPD, or any disease for that matter.  What I am saying is that your activities in no way fall within the definition of disability in the LTD policy, and no amount of acrobatic rhetoric will convince A**** (or a Judge, if we are forced to sue) otherwise if it otherwise comes to light.”  

There was more along those lines, but the basic upshot was:

“Again, I understand your situation, but you have to make a choice.  Either hire people to do the work – even if it means acquiring some debt now – or give up your LTD claim now and risk losing your other disability benefits which will undoubtedly put you in a worse financial situation in the future.” 

My efforts at wellness through Halo therapy for dry salt inhalation, as well as getting plenty of rest and hiring workers to help me with the rehab of my mobile home were not enough expenditure of monies to show that I couldn’t do all this work myself, and that I was hiring experts where funds permitted.  Aggravating, but we’ve been coming to this point since I first got the “letter of activities” from the law firm in May that put me over the edge in terms of unrealistic restrictions.

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I will ALWAYS choose to try.

I will ALWAYS show up and try again after I’ve been knocked down.

I will NEVER quit and be kept down.  It’s just not in me.

So, for the sake of my own sanity and self-respect, I am refusing to be cowed.  Stupid, I know, but actions have consequences, and that’s just how I choose to roll.  I will not be coerced to sitting in the chair, waiting to die (and which will kill me faster) simply because some bureaucratic pinhead has an unrealistic view of life.

Must be that I’m still all fired up from watching, “Sully”, and knowing that I’m a line-in-the-sand kind of gal for setting limits and not being pushed beyond endurance.

Anyway, as I sit here coughing up a lung this morning, resting, and trying to get ready to go on with my day, my decision has been made.  Here’s what went back to the lawyers:

“Good Morning (paralegal administrator):

I am just seeing this now.  

If Mr. R***** chooses to fire me as a client, that’s his call.  

As for me, there are ZERO funds left to complete the repairs.  I have used all of my savings to hire experts to complete the necessary work.  With the help of hired workers and friends, I am doing what I have to do for moving to a less expensive home and finding a way to survive while I figure out how to rebuild my life despite being on disability.  My disability is real and exhausting, even if it falls within the context that Mr. R***** finds unsupportable for proceeding with my case.  

I am not quitting on him, and I won’t be injured because I’m being very careful (as I have been all my life) to conserve my energy and succeed despite the very real challenges of breathing and living.  

Please let Mr. R***** know that I will respect whatever it is that he decides to do regarding my case.”

I know that pushing back is stupid, but I’ve got to do what I’ve got to do.  Presuming that he will follow through on his intent to drop me as a client, I guess this means that Friday’s horoscope is more accurate than I could have possibly known.  At least, if they follow through and fire me (my employer, that is), I’ll get access to my 401K and we’ll see what kind of “great severance package” they are going to hand to me, as alluded to in their last 4 letters.

libra-blessings

C’mon… sing along with me:

P!nk:

Never win first place, I don’t support the team
I can’t take direction, and my socks are never clean
Teachers dated me, my parents hated me
I was always in a fight cause I can’t do nothin’ right
Every day I fight a war against the mirror
I can’t take the person starin’ back at me
I’m a hazard to myself
Don’t let me get me
I’m my own worst enemy
It’s bad when you annoy yourself
So irritating
Don’t wanna be my friend no more
I wanna be somebody else
I wanna be somebody else, yeah
LA told me, “You’ll be a pop star,
All you have to change is everything you are.”
Tired of being compared to damn Britney Spears
She’s so pretty, that just ain’t me
Doctor, doctor, won’t you please prescribe me somethin’
A day in the life of someone else?
Cause I’m a hazard to myself
Don’t let me get me
I’m my own worst enemy
It’s bad when you annoy yourself
So irritating
Don’t wanna be my friend no more
I wanna be somebody else
Don’t let me get me
I’m my own worst enemy
It’s bad when you annoy yourself
So irritating
Don’t wanna be my friend no more
I wanna be somebody else
Doctor, doctor, won’t you please prescribe me somethin’
A day in the life of someone else?
Don’t let me get me
Don’t let me get me
I’m my own worst enemy
It’s bad when you annoy yourself
So irritating
Don’t wanna be my friend no more
I wanna be somebody else

Therapy Challenges

arrogance

I wish there was a rule book or a guide about how therapy is supposed to work, what’s taboo or encouraged, or what’s not a helpful practice.  I’ve had just enough background into how a therapist is trained (if I typed out one of my neighbors PhD papers, I typed out a thousand of them when he was going through his training to be a geriatric psychologist).

At this point, I think I’m failing at taking advantage of the whole therapy thing because I talk way too much.

Short of bringing in one of my blogs to the therapist, I’m just not sure how to say this because I always choke up and cry when there’s things that must be said but which are hard to enunciate.

Yes, I’ve been told I’m arrogant. I don’t see it, but who am I to impose my world view on someone else’s opinion?

In my case, I’m going to therapy because it’s “recommended” as part of going through the change of life / grief counseling of going on disability, and because it’s recommended as part of being accepted for stem cell therapy qualification / consideration.

My therapist is a lovely woman, a life coach, with children and grandchildren, and it just seems wrong to be running off at the mouth and know very little reciprocal information about her.  I know that it’s for her own safety that she not talk about herself.  I know it’s for my own balanced therapy that the sessions be all about me.  But, honestly, it’s frustrating to get in there and feel you have to participate and be “on”, and trying and figure out the social cues for when to shut up and let silence talk.

Therapy is so very different than a regular give and take conversation, you know, where you debate all the deep stuff and then go back to your cave and ponder all the stuff that you learned from honest discourse from BOTH sides.

Maybe I’m more of a group therapy person?  But, being a Pollyanna, who doesn’t really think she has issues, wouldn’t that be arrogant, too?

Not sure what to make of all of this, but I went to therapy after 3 months yesterday, and it was all about how much my life had changed since we last met.

– got approved for disability

– bought a wreck of a house (and dealing with my wishes to NEVER be an owner)

– all the money I’m spending on rehabbing the unit to make it sanitary and suitable

– whether or not I was shooting myself in the foot to put down money on the UK trip (but, also an acknowledgement that I couldn’t do anything else.  I need a positive adventure goal in order to get on with the necessities of life).

– The “Ticket to Work” program and resources through the SSD office for getting disabled people off their butts and back into a work program, without jeopardizing their benefits while they “try” to see what accommodations may be needed, and whether or not they are lying to themselves about their own capabilities.

– Frustrations with the lawyer’s restrictions, and my trying to limit my efforts to 1-4 hours per day.

– Frustrations with not being acknowledged by my employer and its insurance agent as handicapped, and having to jump through hoops just to “prove” how incapacitated I am.  Ridiculous.

So, we spent an hour going round and round on my naval gazing issues, and it feels more like I was reporting the news than actually figuring out why I’m there (beyond the sessions being prep work as part of showing compliance with the stem sell program.  Really a means to an end, without any emotional engagement).

– We talked about Hospice and “Transitions” to hospice, which says I’m exactly what they are looking for in a transitions patient, however, I’m too well or too active.

– We talked about the Death with Dignity law, and trying to find a way to document my wishes now, while I’m well, so that there won’t be an argument at the end, 4-5 years or more from now, when it comes down to figuring out if I should be euthanized and people then want to challenge my state of mind and label me “depressed” vs. the reality. which is “determined”.

– We talked about a number of things, including the fact that I hate other people’s noise, and how hard it was for me to adjust to apartment living with rude and inconsiderate people about (because I can hear my Mom and Grandfather with every slammed door and every stomped foot yelling at me, “Quiet!  Think of the neighbors”, and yet clearly, CA, doesn’t have the same neighborly restrictions I was used to from being in MA while growing up).

– We talked about the fact that I find owning a house just a recipe to gather more stuff around me at a point of life when I’m supposed to be jettisoning stuff, so it really didn’t make any sense to give me more room for storage.  Or, homework for selling the place if I live long enough to go into assisted living or hospice towards the end.

So many different conversations, and yet I walk out of there feeling like I’ve just given an oral report and paid for the privilege of having someone listen to me vs. having it make a difference in my quality of life.

Whatever it is that I’m supposed to be getting from these sessions eludes me, as I’m happy to be left to my own devices to entertain myself.

Anyone else reading this blog and who have undergone therapy feel this way?

Honesty as a hazard

youre-not-sorry

Or, something like that from the (presumed) lawyer’s point of view.

Yes, I am a hazard to myself.  As I said yesterday during therapy, I can be self-defeating (like putting down a chunk of $$$ on my UK trip before I’d finished the rehab on the mobile home).  But there are times when I can do no less than do what I feel I must, regardless of the consequences.

I’m focused, and I know that $ once spent can’t be returned, so I chose to do something risky, which then further limits my rehab options, because I’m not a happy homeowner, and never wanted to be one.  I don’t want the obsession over rehabbing the house to meet my needs to become my life for 100% of the time, as I lose all perspective.

But, I also realize that there are hazards to moving ahead with what I want to do in order to try and ensure that life or the Fates have no other option but to fall in and get with my plan.  I realize, and I do it anyway.

So, now I’m struggling with whatever honest may cost me as I move along in talking to the lawyer about my reality vs. their fears about wgat is and is not a “winnable” image for a case.

All names have been hidden, but this is the aggravation I’m dealing with for trying to make progress on my case:

—–Original Message—–
From: (never-you-mind-lawyers)                                                                                                              .To: <COPD4real>
Sent: Mon, Sep 19, 2016 12:16 pm
Subject: RE: Thanks Re: Declaration

Thank you. I’m sure you won’t be too much of a pain at all. I don’t know if it helps, but your experience in coping with this process and disability itself is very common. With regard to activities, we just remind clients to review our letter regarding activities. You have full control of your life, but we nonetheless need to make sure you are aware that there are certain activities that will hurt your claim. We can’t tell you what to do or what not to do, but it is our duty to advise you on what will hurt your claim.

If there is anything that you feel you are doing that may hurt your claim if the insurance company finds it, we need to know about it. As previously stated this is so we can know how to address it and not be blind sighted, not so we can wag a nagging finger.

Regards.

—————- My Response —————–

dont-ask-me-to-be-honest

Hi,

Because I’m not sitting in a chair doing nothing, I feel anything I do may be called into question. If video cameras were to follow me around they’d see:

– Up and running for about 2 hours (if driving) then napping in my car if I can’t get home.

– Any time I’m carrying anything / doing anything / walking, lots of use of pursed lip breathing

– Not a lot of fast movements, as I just don’t have the stamina, and I stop in place to rest when I lose my breath / need to catch up and breathe more smoothly.

Unless there is a specific issue which they raise which requires an explanation, I feel like everything is under siege for challenging.

Right now, I’m busy painting my new home and preparing to move (activities which require my involvement), and anything that’s not been farmed out to experts has to be done by me.

In general, I work for an hour or so and rest. If necessary, I take an actual nap. Then, I’m up again working on something easy while being available to supervise the workers hired to make my new home suitable for occupancy. I’ve hired a worker to do the heavy cleaning, and I’ve also had my friends helping me to get the basics done in addition to my own efforts.

I’m trying to get the rooms painted, however, the screens are either missing on the windows, or rotted away. There is no air conditioning, and it’s too hot to work with the windows closed to keep the bugs out. Over last weekend, I tried to use the ladder to repair the screens myself (since both the window guy and the screening guy have walked off the job, never to be heard from again, and I’m under a deadline to get the work done so that I can move out of where I’m living).

It took 3 days of trying to conquer my shakiness on the ladder, and only the small bathroom window was temporarily repaired from outside via the ladder. (Until I can get an expert to actually show up and do the work, probably in the Spring at the rate I’m burning through cash, I had to figure out some sort of reasonable screening solution).

When I wasn’t steady enough on the ladder to be able to tack up some screening on the back bedroom windows, which were much higher up (after first pruning back the rose bush, so that I could reach the windows), I gave up after about an hours worth of effort for that day.

The next day, I dropped off more supplies at the unit, and tacked up the screening on the walls inside the bedroom, and that will last as a repair until I can get an expert in to do the repair properly. That was all the work I had the energy to do on that day, as the 45 minute drive each way is also exhausting.

I’m hustling about 3-4 days a week, and I’ve given up my exercise classes as I just don’t have the money to waste not going to class, or the actual stamina to do the necessary swim exercises and also get ready to move. It’s an either/or kind of thing.

Additionally, the park manager has decided that my home now requires weeding because it’s a “fire hazard”, yet they didn’t make the Seller clean up the yard prior to selling. So, that duty has fallen on to me, and I don’t have the money to hire out the work. So, I’ve promised the park manager that it will be done over time between now and November, and I’m working on it a little at a time as my energy levels permit.

So, last week, I trimmed the tree in the front yard (an hours worth of work in the hot sun), and it took lots of breaks, arm exercises to keep feeling and flexibility in my arms, and I was able to get that one piece of work done that day.

With today’s weeding, it was the same thing. I worked on the patch behind the shed, and the bending over is challenging for causing increased shortness of breath. I worked for about an hour, and then was wiped out / shaky for the next couple of hours while the floor guys were working on my home. So, there was some work done, but there was lots of sitting around, doing nothing, trying to stay awake and trying to recuperate.

After these kinds of challenging workouts, I schedule a salt breathing treatment on the way home (both to nap, as well as to clear my heavy congestion from working in dust and keep healthy), and that takes about 45 minutes. Thereafter, I head home and go to immediately bed. Today’s nap was another 3 hours, from 5pm to 8pm. This is my life right now, as I’m under the gun to get moved out of this place a.s.a.p.

Please be aware that I’ll be continuing to work on the yard for about an hour at a time, as there is no other option available to comply with park rules for ownership as I’m out of funds.

It’s stuff like that which makes me crazy, knowing the restrictions that have been advised, but it is what it is for trying to get this place cleaned and rehabbed before I can move in.

With my breathing issues, there’s no way I could move into the mobile home the way it was when I purchased it, and there’s no way I can live there while construction (flooring and painting) is going on. So, I’m trying to be careful while also sticking to my schedule to try and get out of here by October 8th and moved in there completely by the 16th of October to avoid paying another full month’s rent in two places.

Tomorrow will be a down day, possibly driving to Gilroy to order supplies, if I have enough energy. The roofing folks come on Thursday to reseal the roof, at which point I’ll probably do another hour in the yard pulling weeds or tackle another coat of paint as long as my energy lasts.

Believe me, I’m trying my best to be very careful to not push it and make myself sick. I must say that the salt inhalation treatments have been amazing in helping to get the crud out of my system as this is the first August in a long time where I haven’t gotten sick due to the changing of pollens.

But, reading all the guidelines (and my Catholic upbringing for always being guilty even when I haven’t done anything wrong) just let’s me know that anyone looking in from outside would have a lot to say about what I’m doing.

But, no money = live in filth, and get sicker, or push myself with sweat equity and rely on the kindness of my friends to help me get this place in shape so that it’s weather-tight before the rains start. Once the damp weather comes, I’m going to be back to being pretty much housebound (except for exercise classes or social events) as it’s just too hard to push myself when its damp and chilly.

So, that’s what’s going on in a nutshell. And, that’s all on top of continuing to research stem cell treatments and trying to figure out what kind of job I might be able to maintain as I track my energy levels (and related memory and intelligence levels) each day as I try and maintain some sort of normal routine and engagement with life.

I can’t stress enough that your team needs to become familiar with http://www.COPDathlete.com, to help me push back against the naysayers who might say that I’m faking being ill, as Russ has broken all the rules for busting through barriers to compete in marathons despite the reality of his lack of stamina with COPD and his inability to have consistently good days. If you don’t push yourself with COPD you decline, and the disease isn’t the same for everyone, but there’s enough similarities that the benefits of movement have been well documented. Luckily, it doesn’t take any kind of mental intelligence to paint or pull weeds, so when my shortness of breath leaves me in a fog of tiredness, there’s nothing critical that needs to be done which relies on any kind of actual sharpness to complete.

Fighting the barriers which say, “you cannot”, has been a key part of my quality of life, and going on disability hasn’t changed that normal reaction to fighting restrictions. I’m not being foolish, but I’m pretty aware of how this may look from the outside, especially with an eye to not paying my matching benefits because I’m “too well”. I’m not that well, but because I’m out there and trying every day, it is subject to debate despite the test results. First and foremost, I would like to find a way to remain relevant. Movement is part of keeping that hope alive.

Ok, this is too long and I’m tired and sure I’m talking in circles. I’ll close here in the hope that this makes sense.
Regards.

————- End ————-

Clearly, this note is honest, too long and may be ill-advised to post.  But, short of saying, “You can’t handle the truth!” I can’t find any other way to be except who I am.

I make a lousy Camille.

sarah-bernhardt-open-coffin

 

Gross *** graphic ***

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I’ve done what I could to hide the next images from the basic feed, because it’s a gross but necessary topic when dealing with COPD and its related challenges.  At least in my case.

One unfortunately scientific level of inquiry as to one’s health involves their stools, their urine, and their mucus.  When you visit the doc, just like when goung to the vet, they want examples (or, actual samples) to help them dagnose what’s going on.

Because of the ick factor, we often know what’s going on with our bodies, because we’ve been trained to analyze our output from a young age (or, I was taught that, due to my version of asthma / COPD steming from a birth defect), but we can’t be graphic due to timing of the incident, or society’s training against the ick factor for sharing the grossness with others.

As I wrote in an earlier blog about what I get from the better breathers club conversations, and a very educational conversation on mucus, sometimes we have to park our sensibilities at the door and move forward with graphic discussions or images.

Someone new to COPD, or any breathing difficulty, may not understand the messages their body is giving, and so everything is either ignored until it becomes an emergency, or everything is treated as an emergency to avoid having an actual health exacerbation.  Frank, descriptive conversations help a lot, but until one has had years tracking and evaluating their own body’s output signals, it can be quite confusing to try and read the messages being sent.

So, today’s ick factor is about mucus, phlegm, congestion, or post nasal drip – whatever you want to call it.

On a relatively good day, I cough up a ton of clear (but solid) congestion, which clogs my throat as I sleep, and which takes forever to expel each morning.

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Most mornings and throughout the day, the mucus is relative clear, meaning that it’s part of my disease and ongoing congestion, but not something to be worried about as it’s not pus green or bile yellow, so my lungs are just doing what they need to do – like trees – for cleaning the crap out of my lungs and getting it out of my body through coughing.

The lungs of Earth
Tree with form of lungs, oxygen for the earth

Like the nacre of an oyster, though, my lungs collect the blood and crud that is an offshoot of the strain on my body, and forms it into hard little pearls of congestion that sit at the back of my throat, bugging me, until I can cough it out.

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(I have come back and made this picture much smaller, as I’m trying to educate without grossing you out and ending the conversation).

This bloody, cruddy, harder bit of congestion being expelled is my signal each day that I’ve gotten up the worst of it up and out for now, and am free to finally start my day.  Or end my day.  Or, can leave the restroom and rejoin polite society.

No pus or bile to add to the mucus to show an infection.

No larger bits of fresh blood in addition to the mucus to say something’s serious.  Just some basic blood and hardened crud, clogging my lungs like gum, sticky and useless.

Congestion is just another tool to remind myself about my general, underlying health, and that I’m doing better for breathing, having gotten this bit of detritus out of my body.

Depending on my congestion level, sore throat status, or sinus complications from seasonal allergies, these plugs can be up to 2-3 inches in size and diameter.  (Truly the definition of having a “frog in your throat” for trying to get through the day and not cough constantly, trying to force it out).

Monitoring their color and size helps me figure out what preventive measures to take each day to try and get it smaller, or to keep it from turning into an infection as seasonal pollens, changes in the weather, and volume of wind speed impact my breathing and congestion each day.

After doing something I shouldn’t (i.e., having a life) I often find I need to push the liquids to clear out the congestion, or, my latest go-to solution, (which works much better than eucalyptus in the shower, or salt water gargles) the salt inhalation treatment.  Sitting for about 30-45 minutes in a room of salt-filled air, breathing in and out, re-invigorating my lungs and clearing out the buildup of crud.  If you haven’t tried halo therapy, think about it.  Dry, inhaled, himalayan sea salt therapy is the best thing I’ve found yet to cut the congestion.

Really don’t have much more to say on this topic, but if you’ve made it this far, I’m sorry for grossing you out and hope it was more educational than ickky.

 

Whispy. Woozy. Swampy.

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I’ve just packed up and walked 4 light weight boxes (clothes only) out to my car.  I’ve also taken some fishing gear (since I’m not using it – why not get it out of the way???), and car seat back headrests (just in the way, while I’m packing up stuff to put in the shed).

After that very lightweight effort, I had to take a break to recharge my batteries before I get on the road.

Not for my safety, but for YOURS.

As I’m being introspective and challenging myself about my ability to work and hustle more than I am, I’m still coming up against the brick wall each day of exhaustion, tiredness and breathing problems.  Whispy.  Woozy.  Swampy.

We developed these descriptions growing up as a way to figure out if hospitalization might be necessary if I kept on pushing myself.  There was no vocabulary to know when I was slipping out of control (although I learned by the time that I was 12 or 13 that sleeping on the floor, under the dining room table, is a clear indicator that I’m slipping into deeper illness).  At this point, I no longer have to try and translate what I’m dealing with every day to a concerned housemate, and I’m proud to say that my biofeedback and salt inhalation treatments keep me somewhat stabilized between “whispy” and “woozy” most of the time.

Whispy” is when I’m short of breath, and whistling while inhaling or exhaling.  As long as I am careful, I don’t sound like Darth Vader and no one notices unless I move too fast or do too much.

Woozy” is when I’m short of breath, have done too much, now have arms like jello (sometimes legs, too), and I can’t get enough breath to feel well enough to do much of anything complicated.  My brain starts to fog, and I know I shouldn’t be driving as it’s almost like being drunk.

If drunk is the way I go for being short of oxygen, I’ll be thankful.  There’s nothing worse than gasping for air, having panic attacks or anxiety because you can’t catch your breath, and it gets really scary.  Luckily, I’ve learned to use biofeedback and relaxation techniques (along with deep breathing) to restore my equilibrium back to the “whispy” state of being, so long as an infection or virus hasn’t caught me unawares.

Swampy“, however, is when I have my most productive cough (most mornings or late evenings), and when congestion and obstruction for breathing settles in my chest like a spectre of death, waiting to see if I will beat it, or it will be me.  There are times when the mucus is frightening, stealing my breath, and leaving me coughing without the ability to catch my breath as my body fights desperately to expel the congestion.

Having just loaded the car with 4 skimpy boxes and some laundry, it’s most aggravating to have to check myself and wonder if I’m goldbricking, or if there is a way that I can push through and work harder.

I’m sure, if my hair were on fire, I’d find a way to try.  But it isn’t.  So, I do what I can while wondering how sick is sick “enough” when it comes to being paid back for benefits one has paid into.

I certainly don’t want to give up my attempts to travel or try new things.

The real question is whether or not the insurance company and the lawyers are being unreasonable and counter-productive to insist that I be chair-bound before I have a reasonable argument for my particular situation.

 

Introspection.

moving

I should be up and hustling to get to the new place and start working, but I’m dealing with my normal morning congestion and lack of umph.  My arms have been tingling all morning (I started today at the lovely hour of 5:45am, and only now am I even close to being ready to get started), and now my right shoulder is spasming again.  Psychomatic?  Who knows?  I just know that it hurts, and I try meditation and other biofeedback measures, along with gentle movements, to get it unkinked every day.  More pills and their side effects (never mind the expense) are not my first choice for anything that’s bugging me.

Anyway…  as I’m going through the legal case gyrations for preparing to sue my employer for not recognizing my disability, I’m continuing to challenge myself about whether or not I’m sick “enough”.

The whole challenge of fighting to be as well as one can be involves living in denial.  The absence of a wheelchair or a white cane plays right into Society’s suspicion that I must be faking it, as I continue to try to live every day instead of retiring to the sidelines, waiting to die.

Seeing all the “Fault is in our Stars” updates on CNN about the passing of the male half of the couple at the tender age of 25 isn’t helping, either.  None of us knows how long we will have in this world, or the qualities of our lives, and I prefer to LIVE vs. simply to exist, waiting out whatever time I have available to spend on this big blue marble in space.  But, living is expensive, and I want my money or need to find a new way to make more that will accommodate my failing abilities.

Last night, driving home after I pushed myself too hard, I caught myself weaving on the road a bit (thank heavens for those noisy Doc’s Bots to let you know when you’re crossing the white line or drifting).  It was a clear indicator that I was too tired to be driving, but with my home 45 minutes away from my apartment, and my stuff at my apartment, there wasn’t a heck of a lot of choice in the matter.

Didn’t get a whole lot done while working on the new home as the energy wasn’t there, and climbing the ladder is scary when trying to work on the windows (I’ll have to find a better, platform-like solution, if I’m going to continue to try and do the home repairs myself).  I did figure out, though, that I’m not too proud to go all white-trash-on-parade and staple the screens to the window frame INSIDE the house (pictures to come later), vs. continuing to try and put it up improperly/properly on the outside of the windows and risk falling.

Tacky?  Yes.

But, this is what happens when one is determined to stick to a schedule and get moved, and the budget and stamina says, “Ha!”

This morning, I need to pack a bunch of light weight boxes, get them into the car, and then get over to the new place and put them into the storage shed so that I’ll have room here to keep on packing, and after that I’ll continue painting.  Oh, and to also take measurements of where the baseboard will go on every wall, as I think I’m being taken advantage of for outrageous pricing.  But, instead I sit here double- and triple-checking myself, very introspective, trying to make sure that I’m confident I’m not goldbricking because of having to deal with the lawyers.

I don’t think I am exaggerating the effects of this disease on my life, but knowing what I can do at times with 26% lung capacity (very Russell Winwood, of http://www.COPDathlete.com fame for trying despite the reality of the challenges we face), I also believe that no insurance company can put restrictions on what I can or cannot do in my fight to remain as normal as possible despite the challenges of my breathing.

When I wrote my declaration this time, I put in a bunch of stuff about doing a walking tour of the Grand Canyon the day after getting the stitches removed from my skin graft following my cancer surgery in 2013.  I also put in there that I later damaged my left knee and right leg trying to protect the site of the healing wound, when I flipped over the kayak.    Yeah, I was angry.  Yeah, I was grandstanding to try and illustrate that sitting on my butt is not my first choice, and will NEVER be any kind of choice that I will easily make.  I like challenging myself, and I resent very much being told to sit down as trying to pass for normal (something I’ve done relatively well my entire life) will ruin my case.

crabby-old-woman

My declaration may be grandstanding a bit, but I think it also serves to show that I’ve been very active all my life for an overweight, basically lazy and always stamina-challenged person, and that I resent very much being forced to curtail my activities due to the toll this disease is taking on my life.  Memories of my childhood include all those times when I could escape my mother’s tender cage, and actually go camping, ride a horse, jump off the dock for hours practicing my diving (which, yes, later sent me directly to the hospital with pneumonia).

Hearing my Mother’s shouted admonitions to, “Walk !  You will walk, young lady!”, being yelled at me from across the girl scout’s campground now coming from my lawyer’s mouth is just that much more unsettling and nightmarish, you know?  (That’s not a slam against my sainted Mother – the lawyer’s motivations are profit driven, and Mom’s were a combination of desperation [not another hospital bill !] and love driven.  I get it and am truly thankful for all her heartbreaking sacrifices).

That being said, though, I’m angry to be trapped in this life, damnit.  And that anger is before one realizes that I hate being told to sit by folks that don’t understand that it’s the LAST thing one should do if one wishes to remain stable and somewhat independent and well until the end of life.  Camille is the last thing I should aspire to be during whatever time I have left…

bernhardt-camielle

I also wrote that I’m stuck in limbo, unable to go on with my life and pursue options such as “a ticket to work” for finding handicapped people jobs that work with their illnesses, because I’ve had to focus on getting moved into an affordable place (and buy a home – horrors) because I’m not getting the benefits I earned and the inconvenience of financial poverty has smacked me full in the face.

Not sure how the lawyer is going to take all this drama, but I felt better writing about that, and getting it off my chest than about bemoaning how sick I am every day and how much time it takes me to get up and moving.  Plus how inconvenient it is to worry about blood sugar spikes, having the runs, and dealing with the exhaustion of not feeling my best yet trying to keep engaged in life.

I’ve probably come across as some sort of crackpot (that’s ok, as long as I get the benefits I worked to earn), but certainly it makes me Ms. Crabby most days.  But, if crabby keeps me in there keeping up the good fight, I really can’t complain.

For today, though, I have got to get up and get my butt in gear.  Too much to do to waste any more time on introspection today.