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

 

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