As the diseases progress

fatty-liver-disease

… it seems like it’s always something.

The lovely news I received while traveling recently was that a CT Scan of the abdomen now costs about $6k (luckily, my portion this time appears to be only $299 – crazy, but I’ll take it) and that the expenditure of funds has shown a large change in my health, even if the adrenal tumor has not grown (yay!  one positive bit of news).

Secondly, it appears that my right side pain may be directly traced to fatty liver disease, verging on cirrhosis of the liver, in a case of what they are calling non-alcoholic fatty liver disease or NAFLD.

It’s great to have the potential source of pain identified.

It sucks to have yet another complication to my health.  Especially one with such an ominous name and threatening complications.

Everything I’m reading says that I have to keep my intake of protein up, as that’s kinder on the liver than anything else that I might want to eat.  Additionally, the studies I’ve found are indicating that Metformin, the diabetes medicine, may help to make inroads in fighting NAFLD.  Of course, I’m not on Metformin or anything else, given the crappy non-care that I received from my prior endocrinologist.   None of these findings were on the CT scan from 2015, so (until I hear otherwise from the new Endo), I’m going to presume that the lack of decent care I received from that prior doctor contributed to a major health complication that being on Metformin might have prevented.

*** I’m not a doctor.  This is not a medical conclusion ***

Everything that I’m reading in trying to understand this latest complication seems to indicate that my trying to stick to a mostly-protein diet was the right thing to do, and also seems to indicate that Metformin may offer some hope in the future.

In reality, I won’t know until the end of June / early July what any of this may mean as we begin yet another round of appointments with my doctors.

So, I continue to try and remain busy and active, and continue to try not to worry about anything that I cannot control.

Graphics like this don’t help, though:

Fatty Liver Progressin

(The next image after Cirrhosis is “Liver Cancer”.  I decided to ignore that part for now).

Especially when the test results summary describes my liver damage as:  “hepatomegaly and severe hepatic steatosis”.  (Makes it seem like I have hepatitis, but in reality all that translates to NAFL, leaving hepatitis as a less likely but possibly complicating condition.  Which is what I understand from the reading).  Additionally, “The liver has additional morphologic changes which may represent early cirrhosis.  Liver and billary tree:  Enlarged liver with extensive diffuse hepatic hypo-attenuation, mildly lobulated contours and widened fissures.”  (Lovely.  Don’t you want fissures?  Just reading the word makes it sound ominous).

Plus, bonus round, where my original 2015 report showed no signs of “atelectasis”, this report now shows mild left basal atelectasis (collapse of the lung for us laypeople).

I don’t know why I bother to get the medical diagnosis of the various things going wrong with my tired old body, since I already have a chronic health challenge, but I guess it helps me figure out where to interfere, and where to let nature take its course.  Or, something like that.

Nothing more to add at this point, as I’ve started to try and work on rehab of the screened in porch, and the selection of workers is driving me mad.

Life continues to be good overall, and we’ll see what happens from here.

753 Steps Today

Las Vegas Steps in Review

Compared to the 16k worth of steps I took on Sunday, I have to say that I’m a slacker when I’m at home and doing my own thing.  Travel is good for the soul, and I’m happy to have been able to go to Las Vegas to share company with my Aunt for her birthday.  I was also thrilled to have company, since I refuse to sit vigil at my Aunt’s bedside while she waits to die.  I just don’t have enough patience for that.

So, trying to find ways to keep in gear with the pace of life despite my COPD challenges for shortness of breath and exhaustion, I got a Fitbit.  As you can see from the summary above, the Fitbit reporting feature is less than practical.  Ideally, I’d want a simple report that shows my daily totals for:

– sleeping / wakefulness / insomnia

– amount of steps taken / peak times

– calories burned / value of activity (always want this low to avoid an exacerbation)

– food log (want to be able to track this online without wiping out Steps / Peak times)

As you can see from the first graphic, above, I prefer to know my number of steps along with my hours of sleep achieved each day.  Unfortunately, there is no such report in either the regular or the premium account, so I have to put it together myself as interesting data segments vs. relying on Fitbit to give me some simple options to be able to chart the information relevant to me over time.

In particular, I love the daily activity log, as it helps me to ensure that I’m active, and warns me when I’m doing too much that might exacerbate my underlying breathing difficulties:

Fitbit Steps Taken - high volume day

As you can see from the above chart, any time I’m getting in worthwhile, sustained movement, the color turns green on the chart.  Helpful information, certainly, but all that data is lost if I decide to manually enter my food / calories consumed (don’t ask me why – I’ve given up on using that feature.  I write it all down in a manual log, which is frustrating).

Also, I get a great deal of information from the Sleep report chart, but I have to drill down into the individual days in order to see actual details, which is aggravating and wastes time if I’m trying to figure out if there are certain disturbances which happen daily at the same time.

(Weekly sleep report chart):

Fitbit Sleep Report

(Daily sleep report specifics):

Fitbit Tuesday Sleep report

Fitbit wants to track me against other people of my same age, weight and gender, and I’m happy to have the information (from a competitive viewpoint), but in the end, given my health, the only one I’m supposed to be competing against is myself:

Fitbit Premium Sleep Report

I mean, it’s interesting to know that 96% of obese women, aged 55 to 64 years sleep more than I do, but in the end, it’s not my reality so it’s not relevant.

Instead, I want to look at those days where I show I’m getting little sleep or no sleep, and then think about relevant external data:  air temperature, local noise conditions, barometric pressure, etc.  Knowing that I average 1 to 2 days a week with little to zero sleep is a nice confirmation statistic to have, however, it doesn’t help me solve the problem with the data available.  Sad.  I’d expect so much more from a fitness encouraging tool.

But, all that being said, I’m in the process of ordering a Waterfi modified Fitbit Alta which has been made waterproof, in the hope that I can get back into swimming on a regular basis.

Keeping busy is my best option for staying well, and I’m very pleased that my Fitbit Alta is doing the job to keep my butt in gear (when I pay attention to the prompts) for walking and general movements.

Summer is here (even if it is, technically, still Spring), and I’m doing what I can to keep busy despite the high temperatures and the broiling sun – both of which are better for me than the pouring rain / cold, but which can also cause an exacerbation.

Whatever you do to remain active, fellow COPD sufferers, I hope you find a way to avoid exacerbations and keep healthy despite any underlying health challenges.

Pushed around and fed up

Stupid

Nothing much to stay, still.  Aggravated with everyone and everything, and the clawing back of my disability benefits, along with some very expensive medical tests that I’m trying to get done have me at my last edge of patience.

So, I will fly away to visit Auntie in Las Vegas for a few days, and hope that I will return with a largely improved attitude.

18 months in…

I originally wrote this post at the start of my journey on disability:  Da, da, dum, dum...

18+months later, I’m still struggling with the issues I originally raised for how to deal with the mental games the insurance company and society plays vs. being honest with yourself and your doctor in setting your expectations accordingly.

So, it is with perspective that I write to update my blog about then vs. now for energy levels and mental adjustments needed and revised.  I started this journey with a lung capacity of 31-32 percent, and I have devolved down to 26-27 percent, but I’m continuing to hold my own as my oxygen level seems to have stabilized at 96% on good days.

Originally, the insurance company took the position (after my employer’s company granted me benefits) that I was not ill and had not “earned” the benefits that I’d paid into during my 42 years of working life, and refused to pay out the benefits.   Thus started the 18 months worth of effort in disputing this refusal of benefits, eating into my personality despite the reality that my birth defect was getting worse as my Asthma devolved into COPD.

Imaginary Invalid

It’s been a huge series of changes and adjustments, with a great deal of fighting along the way.

I’ve had to scramble for money.  I’ve had to fight to find an affordable place to live (and, horrors, am now a homeowner with all those related financial disasters looming as the house needs maintenance and repair).  So, I could not be anything like the convalescent invalid that they seemed pre-disposed to demand from anyone claiming disability… I am your single, liberated woman disabled person, determined to make the most of my life independently for as long as I can manage things.  Naps are essential. Naps consume whole days.

But !  I refuse to let life pass me by while also accepting that things must change as I can no longer work each day and maintain any kind of work / life balance as most physical things, things requiring endurance, are beyond me to sustain.

Felix Edouard Vallotton - Laid Down Woman Sleeping (1)

Rather, I am an active invalid, sleeping any time, anywhere, as I fight to keep active and enjoy my life as much as possible for as long as I can remain active.  Sleeping in my car while doing errands (when sudden exhaustion or tiredness hits) is the new normal for me.

Being good about planning my day to keep a day of rest between activities is also essential.

Wanting to remain active, and not wanting to endanger anyone when I’m behind the wheel by driving tired, I’ve gained the ability to sleep any where, any time, and do it safely.  (Important:  Crack the windows for air on hot days, but don’t leave them open as you are very vulnerable when you sleep).

Gustave Leonard de Jonghe caught my version of disability best, in his picture of “After A Walk”:

Gustave Leonard de Jonghe - After a Walk (2)

So, as we continue this journey into disability, the insurance company and me, and I have finally won my benefits, I am continuing to challenge them about their notions of what are reasonable pre-conceptions regarding individual abilities while still being disabled, and what is out-and-out ridiculousness.

It’s getting easier to wrap my head around my need to be an activist for my reality.  Frustrating, but easier. I am more than a label, and I’m not dead yet.  Don’t restrict my movements in order to prevent me from remaining as healthy as I can while in reality I slowly decline.

 

***********

Painting credits:

(1) Felix Edouard Vollatton = Laid Down Woman Sleeping

(2) Gustave Leonard de Jonghe – After A Walk

Mail-aversion?

images-2

There used to be a time when I was pro-mail. Couldn’t wait to see my name on an envelope. Couldn’t wait to open it all up and see what wonderful surprises awaited me.

Now? Not so much.

It’s not that I get bad news in the mail. It’s just that I’m able to leave it in piles all around the house and never actually get around to opening it up more than once or twice a month.

Not sure what gives with this new non-habit of mine.  (A non-habit is an aversion to doing anything in a timely manner. Not putting away the groceries.  Not opening the mail. Generally, pilling everything for review later, and making “later” much more onerous than it needs to be).

I met with the lawyer to put together my will, etc., and he sent me off with my marching orders. Did I do what I was supposed to be doing in a timely manner?  Nope.

Even though I signed up for the appointment and determined that getting my paperwork in order was a priority for me before doing anything else.

Every day I get out of bed and go do things that I’ll enjoy doing more that day than “adulting”.  “Adulting” includes the following necessary categories that have fallen by the wayside in my home:

– Cleaning

– Cooking

– Gardening

– Bill Paying / Mail opening

Don’t get me wrong – I cook every few weeks or so in order to avoid cooking daily. I am the queen of microwave re-heating.  I also enjoy gardening, and have a variety of plants in my yard waiting my attention to complete their interment in the Spring fresh ground. Ditto cleaning. There’s no dead bodies or spiders around, but clutter abounds.  And, I’ve already covered the monthly effort to pay bills (every 22-25th, I’m all over that necessity).

Otherwise, I’ve pretty much chucked “adulting” by the wayside and simply do what I want while my energy lasts. Going for a walk to get in my necessary steps each day.   Driving and taking pictures. Meeting with friends for dinner or a movie.  Napping.  Lots and lots of napping…  Listening to audio books or music. Building shelves and getting the shed organized.

My house looks like my long-conquered ADD / HD had taken over my life once again, with lots and lots of half-finished projects and activities.

Anybody else have problems “adulting”?  Inquiring minds would love to know.

 

Mentally Deficient – Not !

Or, not yet anyway…

Mentally Deficient

Part of the challenge of dealing with COPD is a lack of oxygen.  Lack of oxygen leads to exhaustion.  Lack of oxygen leads to gaps in thinking.  The only solution is plenty of rest, and planning ahead to avoid over-extending myself when the failure of my body to process oxygen as originally designed leaves me physically and mentally exhausted.

Oxygen deprivation / mental exhaustion is treated by rest.

Mental exhaustion driven by COPD is not a permanent condition, consistently predictable at every hour of the day.

It’s the good days / bad days juxtaposition that is causing the most agita within the insurance community.

Part of the challenge of dealing with my employer for the fight for survival benefits that I have paid into and worked to earn over this past 42 years is the fact that I don’t have 42 years worth of employers arbitrating my benefits earned over 42 years of payments, but rather I am dealing with the last employer to be holding the “hot potato” that is my earned benefit package.  The hardest challenge to fight has been the fact that the insurance company / my current employer have strongly implied that I am nothing more than a trained monkey, and need to be kept busy through the reward of hard work, and don’t deserve benefits because I am not “incapacitated”.  Or, not incapacitated ENOUGH.

OLYMPUS DIGITAL CAMERA

My employer’s insurance agency seems to feel that incapacity = not being able to enjoy life, drive a car, travel or otherwise leave my bed / couch / chair or house.

Apparently, being able to plan ahead to deal with physical and mental weakness = fakery.  Fraud.

So, it’s been very challenging to get dribs and drabs of paperwork describing what happens next after they agree that I am disabled / incapacitated.  So far, I have received 32 pages of paperwork describing how they calculated the $32k in benefits paid out to me.  I call this regurgitation of crap “disability math” or “new math”:

New Math

There’s lots more pages of paperwork they are sending over, too, but that pile of gobbledygook doesn’t have a single dollar attached to it, and contains nothing but page after page of threats about fraud, constant audits, and what disasters will befall me in the event that I am able to work and fail to report back to them that I am ready and able to hold down a job.

In particular, I find it ominous that it’s taken me 18+ months of fighting their denials to get the past-due benefits owed to me, and yet the paperwork received contains a threat of future denial of benefits and some sort of claw back due to fraud.  As if anyone in their right mind would WANT to give up a decent paying job and independence to be nagged to death and challenged about personal health choices at every turn:

Changing Scale for Defining Disability

I am not aware of anyone in this world reversing COPD and finding a cure.  (If they are out there, please speak up.  I want my life back).

I am not aware of any cure associated with avoiding disability-related depression by working at finding joy in life, or traveling, or driving a car (on my good days).  Such activities clearly have no way of becoming something that is able to cure COPD.  Apparently, though, my efforts to remain upbeat despite my challenges is causing my employer’s insurance company to believe otherwise.

Having dealt with denials of pre-existing conditions for my entire work life when it comes to paying out benefits that I’ve paid into, I am well versed in the lengths insurance companies will go to for profiteering over paying out its obligations.

But, having been put on Federal Disability – a pretty high standard and tough hurdle to cross – plus, having been a menace to others when trying to keep up a “normal” work schedule – I find it absolutely aggravating / depressing / maddening to continue to receive reams and reams of paperwork that talk about what disability means, and how it changes over time to not be as debilitating as originally thought.

Seriously???

If I didn’t have a mental health issue before starting this journey, I think I would reasonably acquire one over time after reading pages and pages of this crap.

All of this baggage, however, then brings up my final issue… the belief that I can think myself well.  The soul-destroying thought that something within me is driving me to self-sabotage by ruining my life via a “convenient” disease / birth defect.  That little voice in the back of your head which sows seeds of doubt and has your brain on a whirlwind of unproductive “shoulda / woulda / coulda” thoughts about how I’m at fault for not being well.  Not being good enough.

I’ve already been through this with my brother’s brain cancer, and I know he was a good enough person with no self-defeating thoughts to give himself brain cancer and thus end his life way too young.  But, I saw what the “happy thoughts” belief system did to bring him grief, and to make his efforts to live and stay in this world the hardest battle he ever fought.  Big Bro was an athlete, in superb physical condition.  If anyone could have found a cure through happy thoughts, prayer warriors and positive thinking, it would have been him.

Folks, I am not a Christian Scientist, and I don’t believe that the world revolves around any belief system contained between my two ears.  I have a birth defect which was / is a physical problem that fluctuates between good days and bad days, and which worsens over time.  This is a condition which has worsened despite multiple surgeries and related medications to keep me functional enough to pass for normal.

At what point will the insurance company accept that I’m as good as I’m going to get, am still declining a little bit more each day, month and year, and just leave me the breathing room to be thankful I’m not dead yet???

Would they rather pay out benefits to people who I killed because I thought I could believe in myself hard enough to deny the reality and repercussions for continuing to live in denial of my worsening health???  Three+ car accidents is enough of a real life example that it’s time to accept one’s limits when dealing with oxygen deprivation and exhaustion while trying to keep up and pass for normal.

No answers here, but this gives you an idea of the garbage that’s still in the back of my brain as I try and figure out how to keep as healthy and independent as I can DESPITE finally making some progress on this benefits issue with the powers-that-be.

health-570x272

 

 

Hazard to myself

sandra

This Winter has been hard, as I have a hard time asking for help.  I was raised to figure things out on my own, and to find a way to get things done despite any roadblocks.

One of my biggest challenges this Winter in dealing with my mortality is to find a way to heal the rift with my Baby Sis.

o-SANDRA-900

I don’t know that it’s possible, because I wouldn’t have changed anything I’ve done in life,  and I’m trying to respect the boundaries her anger is putting between us.

I lost the bid to fix my Baby Brother’s grave.  I gave it my best shot, having asked for professional help in 2013 and being assured that I had a sound argument.  However, that effort was merely sending good money after bad in terms of dealing with a crappy lawyer who did something different than what she was hired to do, and agreed to do, and who then backed off when it came time to go to court.  I have to live with that.  I also have to live with the fact that I chose not to leave it to my Baby Sis to handle, causing yet more hurt.

However, in fighting that battle as I promised our Mom, I seem to have crossed an unfixable bridge with my Baby Sis.  I’ve called and left a few voicemails, but it’s nothing but crickets.  I want to respect the boundaries she’s drawn, so I am backing off.  She has a right to tell me to get out of her life.  While I would think that I am out of her life being 3,000 miles away and given her previous complaints about abandonment, I guess I just wasn’t far enough gone.

Believe me, I “get” crazy.

Yayah

If anyone out there has seen, “The Ya-ya Sisterhood”, I know both my Sis and I are damaged from our childhoods dealing with a functionally alcoholic father, a depressed mother, and (my Sis’s words) a goody 2-shoes sister who was supposed to die at any breath of cold air.  So, I get it when it’s all just too much.

There is a scene in the movie where Sandra’s character is slamming the phone against the counter, demanding to know why she has to deal with her mother and the madness, and I understand that on some level that’s what I represent to my Baby Sis.

She’s never seen me as her biggest fan or advocate because I moved to CA and “abandoned” her (her words).  While I’ve tried hard to meet her half way in a manner that works for both of us, I’ve done nothing but hurt her because of our differing viewpoints.  My “no”s were too much for our relationship to survive, apparently:

– No, I could not be her Maid of Honor.  (I don’t believe in marriage, nor religion).

– No, I could not be her eldest son’s God parent.  (Again, I couldn’t promise to raise her son in the church).

– No, I could not shift my responsibility for Jimmy’s grave to her shoulders.  It wasn’t her burden.  It wasn’t her unfinished business.

Simple denials.

Straightforward.

But, continued cracks in the foundation of our relationship as we always seem to be at cross purposes.

So, while I would like to involve her in my life’s final arrangements, I cannot do so because of many factors – one of which being that she fights the reality of death being a part of life.  Plus the fact that this is a long distance relationship and the related hassles of managing those affairs.  And, finally, because the responsibility needs to go to the next generation – her eldest son – as he promised long ago to help me, and it will be easier on everyone if she doesn’t handle my final wishes.  She already has enough on her plate.

28-Days-sandra-bullock-14385746-500-281

So, not having received any acknowledgement about #2 nephew’s pending nuptials, and getting nothing but silence from my fellow POW from our family’s private little battle, I’ve moved on to make everything as clean as possible for final details so that I’m not leaving a mess for anyone else to clean up.

The Roomie will be listed as my #1 Executor, and she will be given a copy of all the paperwork.  There will be a certificate of deposit created with the Roomie as the beneficiary, and she’ll be able to get her hands on the 3+ months of forecasted necessary funds to handle my affairs the minute she produces a death certificate.

I’ve paid for all of the foreseeable arrangements in advance, and the will is being drawn up with the healthcare directive and power of attorney set to allow the Roomie to handle everything unless she chooses not to do so.

Thereafter, if the roomie refuses to handle everything, or dies before me (not likely), things will devolve to my eldest nephew as my Executor.

I know it will break my Baby Sis’s heart to not be in charge, and cause yet another rift between us, but the reality is that she can’t handle it and I’m trying to be kind and not burden her with that level of work.  Especially when she’s not talking to me.

And, I’m trying to protect my eldest nephew by making him alternate Executor # 2 so that he doesn’t have to fight with his Mom, should I pass away as expected while everyone else is still around and able to handle these details.

I can’t see any other way out of all of this, so I’ve cast my decisions to the wind to let the hurts fall where they may in the hope that there will be little collateral damage.

My sop to my Sis’s emotions is to make her #3 as Executor on the paperwork, able to take over only if the Roomie and the Nephew refuse to fulfill the role.  That’s the best I can do, and I’ll live with the consequences of continuing to work at what seems to be cross purposes.  It’s the best I can do to find a compromise for reality for us both.