Ketone Esters

The COPD Athlete continues to write of his journey fighting 26 to 27% lung capacity and COPD-related inflammation and breathlessness while running marathons.

The blog attached references his latest empirical experience with a ketone diet and supplements in his journey to live and enjoy life despite his crappy lungs.

The blog:   Ketone Esters.

Faith Healing

Faith Healing

I think I’ve been pretty clear that I follow a scientific method first, a homeopathic query second, and faith as a distant third.  It’s not that I believe faith can hurt, it’s more than I believe in logic and tangible evidence, first.

So, I have a cousin that has had multiple surgeries on her left leg (trying to avoid an amputation after a broken ankle went bad, and the wound went septic).  The cuz has had her leg operated on multiple times at this point, and wanted to try CBD (cannabis oil based) salve / derma patches vs. using opioids or other high-theft / high-expense derma pain patches.

The cuz and I were in Las Vegas visiting our Aunt, and she mentioned that she’s having trouble locating CBD salve for her leg, and that she doesn’t have the $ for obtaining a medical marijuana license to obtain the product in Massachusetts.

Me being me, I kept my ear to the ground and found another friend / former work partner who makes her own cannabis salve.  Great.

Cuz tries it, loves it.

Now, trying to get the friend to either cough up the recipe or sell me more, is a whole other exercise in futility.

And, it then started yet another round of text-based debate on belief systems and food choices for making one well vs. relying on conventional medicine.  Or, vs. answering the question I’d asked !

While I did check out “the Medical Medium” as he bills himself, it’s not an answer for me because:  a)  I’m not the one he is reading for an answer, and b)  he “thinks” everyone’s problems are based on viruses within the body causing inflammation.

Yep.  Not a single thread of scientific data, and he’s quite clear to state that he has had no training in western medicine.

Ain’t no one got time for this.

Seriously.

I just want the recipe for the CBD pain relief salve, or to be able to buy some of yours so that I can keep my cousin in pain relief.

Can’t anything ever be easy ? ? ? ?

Enabler ?

IMG_3817

Crap like the meme above, supposedly blessed by a Christian faith, does NOT take into account someone on the margins of mental abilities.

As I wrote in yesterday’s post:  Busybody-Friend

I was off to check on a friend who had fallen off the radar.  While things weren’t as dire as I anticipated, they were still awful.

– Electricity shut off (non-payment of bill)

– Drinks and things needing refridgeration outside in a cooler (WTF)

– Sleeping all day and going out at only night due to high daytime temperatures (but, now a safety issue)

– Rent increased by another $100 a month, month to month

– Phone misplaced somewhere in the dark apartment (which could have been aided by opening the danged levelors)

While she appeared to be ok, I learned that she’s been falling a lot, and that someone had sent the police to do a wellness check about 3 weeks prior (her extended family, I presume).

Also, her paranoia has increased, and she was talking nonsense about hanging out and having conversations with Kelly Ripa and Michael Strahan, the female cast of Ghostbusters, and that Grace Slick is her new bestie.  Sad.  Confusing.  Frightening.  Sad.  I’m just a swirl with my own challenges on that topic of mental health breakdown or failure to cope causing a mental health breakdown.

When I asked her how she got to these venues, she had no answers.  When I asked her if she might have been hallucinating, because Michael Strahan had been off “Live! With Kelly” for months, she just shook her head.  When I asked if it was possible she was spending way too much time watching you tube when she wasn’t feeling well and might be hallucinating, she thought it might be possible.  But she was also sure she was having conversations with these folks.  Her friends.

Incredibly sad.

Then I come back to memes like the one above, and I have to ask – seriously?!!!

I have no answers along the lines of a chicken and egg theme, for knowing whether living as she is is making her mental health challenges worse, or if she wouldn’t have mental health challenges with proper access to care and medicines and food and liquids.

I’ll do what I can by researching mental health and well being advocates for elders, but I’m not going to hold my breath that she gets the consistent help she needs as she is unable or unwilling to participate in helping herself.  It’s criminal, the benign neglect she’s suffering.

Busybody. Friend.

How do we tell the difference?

IMG_3091.PNG

I am about to get in my car and drive for a couple of hours to check on a friend.

I know, if there’s real trouble, that I can’t do much to help.  But.  After talking to myself for 3+ days about this decision, I can’t make another choice.  I’m getting depressed wondering about all the “what if” scenarios.

Her phone rings endlessly, indicating that she’s probably not been able to pay her bill.  Again.  Or, that mental health issues have gotten worse, and she’s been hospitalized.  Again.

Whether I can see her or not, she is always in my heart and I can’t help but notice she’s fallen off the radar.  Again.

So, as either a good friend or a big old busybody, I’m going to get into my car and drive for a few hours in the hope there will be answers at the other end of this drive.

This kind of crap – falling off the radar – occurs so easily when someone on disability, and with low income, retires far away from friends and family.  Moving far away, not because they want to, but because they think where they are going is the only place they can afford to live.  Far from family, friends and support structures.

What everyone seems to forget, though, is that it takes a village. It takes a village to care for our young and vulnerable as well as our old and tired and also vulnerable.

While I get that everyone has to find a way to care for themselves once push comes to shove, I just can’t follow through on that hard line when someone is my friend.  I miss you when you’re gone, and I notice when you don’t show up on the radar from time to time.

Maybe it’s my own ego hoping that my own absence will be noticed by friends and or family if I dropped off the radar.  Maybe this trip is about my ego and needing to find relevance doing something in an otherwise untenable situation.

Whatever it is, I’m going.

Whatever it is, I’ll deal with the consequences of arriving uninvited and interfering.

Friends show up, even if they can’t make one bit of difference.  They miss you, and they show up if they can, when they can.

Clinical Trials – NAFLD or NASH

Science 37 - NASH Trial

As I wrote about in an earlier post:

As the disease progresses

I’m dealing with the latest complications of obesity / diabetes as it relates to COPD, as I have now developed non-alcoholic fatty liver disease.

When I talked to my endocrinologyst about whether or not Metformin was an option for dealing with both my diabetes AND the NAFLD, she was very quick to point out that she wanted me to concentrate on dietary monitoring and weight loss vs. putting me on Metformin.  While she was clear to say that she’d put me on Metformin if it looked like I needed it, she had no problem with me participating in a clinical trial for NAFLD if I chose.

Great.  I’d rather try something than nothing, so I followed up with the folks at Science 37, and we’ll see if I am a candidate for their clinical trial.

If nothing else, I’ll get 6 months worth of monitoring while either on a placebo or their drug, and I will also get 2 additional CT scans at someone else’s cost.

Sounds fine by me.

Yes, I understand that a trial drug, if chosen to take it, can cause problems.  But, I’d rather be trying to fix myself than simply chalk it all up to obesity and laziness and do nothing.

So we’ll give it some time and we’ll see if I’m chosen.  I’ve gone through their preliminary screening, and I should hear back from someone at some point.

How about you?

If you feel that you’re not being heard, do you go out and try and find your own solutions?

Fitbit Obsession

Yosemite Trip stats 2017

Most days, I manage to get 5-7 hours of sleep after keeping busy all day and exhausting myself.  Some days I’m tired all the time, and do nothing but go back and forth between the bed and my couch as I try and find someplace comfortable to sleep while ignoring the aches and pains of my body.

Some days, I’m out and about in the car, and my levels of exhaustion kick in so I need a nap.  In the car.  In the heat of Summer.  You know, the place where you’re not supposed to leave your pets.  Talk about freaking people out, when they walk by to see you sleeping (reclined, in the driver’s seat) in your car.

I can never predict what will trigger longer sleeping needs, but I am loving my fitbit “Alta”, a/k/a “Coach Fittie” for both prompting me to move, as well as tracking what’s happening passively as I go about my day.

The part I’m really fascinated with are the stats for daily activity.  You see, I’m supposed to keep moving, but not move enough to trigger an exacerbation.  So, I use fitbit for the opposite of what most people use it to accomplish.  You will NEVER see me trying to “feel the burn”, or “get some cardio”.  With exercise-induced asthma / breathing issues with COPD, my goal is to keep on moving, but gently enough so that I don’t get tired or break a sweat.

Coach Fittie stats 22JUN17

Any time there is a green spike in the first (Monday’s) measurements, it’s showing where I’m doing sustained movement at a good pace (usually walking), and usually for 400 – 500 steps per spike, to help me achieve the recommended minimal goal of 10,000 steps per day.

While I have upgraded to a Waterfi Alta fitbit so that I can wear it in the pool and track my movements, you can see that my swimming period for Thursday (between 6:30 and 7:30pm) didn’t track at all.  Why?  Because my exercises are constant and gentle, and apparently too gentle for Coach Fittie to notice.

At this point, I don’t know how my measurements are gathered, specifically, in order to challenge any of the data.  Frankly, I don’t care and simply trust the tool as a guide vs. a bible.  However, I will say that, even without knowing the algorithms and how the data is gathered, that I love the data available for waking and sleeping to help keep me on the straight and narrow.  This tool is excellent for both prompting me to move, while not nagging me to death if I am having a low-movement day.

I also like the fact that I can look back over various trips or events, and see where I slept the best and the worst, and see if there are any lessons to be learned about staying well despite my chronic health condition – COPD.

Oregon Trip 2017 energy levels

In particular, I was in the regular bed in Mariposa, in the first table, above.  The next night, I was in a regular bed in Yosemite.  The third night, I’d switched to the sofa bed (a torture device if ever I’ve slept on a bad mattress), and I actually slept 10 minutes more on the crappy bed than I did on the better quality mattress / bed.

I’m able to see how many times I’m restless, and I’m able to evaluate if I thought I slept well, vs. whether Coach Fittie thought I slept well.

When I compare the number of steps taken per day (or during multiple days – the graphic in the right corner of the sleeping charts), I can see that my amount of activity has little to do with whether or not I’m sleeping well at night.  At the end of the day, my restlessness comes down to pee breaks and pain.

I can also track my exhaustion by looking at the second night in Yosemite, when I barely moved and slept solidly (after a day of travel), compared to the night I arrived in Oregon, when I didn’t get to bed until 1am, and then slept like a rock due to exhaustion.

If I can get a solid night’s sleep by exhausting myself so that I’m not tossing and turning as aches and pains wake me up, then I’m going to continue to push myself in the hope that I will sleep well that night.

Loving my Coach Fittie Alta fitbit.  Whatever it is that keeps you up and participating in the world despite your health challenges, I hope you enjoy the process.

Traveling with COPD

Or, pretty much anything with COPD – when there is another person involved.

COPD Messed with the wrong woman

I’m a pretty relaxed person, but I’m also very competitive.  Not overtly, but in general.  I measure what everyone else is doing, and decide if it’s important to me.  Or, the back of my brain is doing the measuring, and I’m in competition without consciously realizing its effect.

During this last trip, we went to Yosemite.

There was some concern about who had the most space in their car (my friend drives a VW Bug), and while I was happy switching to my car, I was concerned that I might get too tired to drive during the trip and wanted to be sure she remembered / knew how to drive a standard (manual shift).

All good.  We both know how to drive a standard, so off we went.

In order to be able to keep up, though, some dietary sacrifices had to be made to keep my energy up (screw the diabetes !).

There were some significant times when I felt edgy for being behind the wheel and driving tired, but since there was somebody in the passenger seat, I was in “competitive” mode which helped me to keep on going.  That and the extra sugar.

My naturally competitive nature is one that keeps me going despite being tired or in pain.  (FYI, pain is a normal part of my life, and it’s getting more noticeable as life goes on.   I have seen the mental health damage that opioids can do within my family, so I pretty much work my aches and pains off vs. taking anything regularly for it as I don’t want to rot my brain or run the risk of being addicted).

So, we’re out and about and I’m sleeping in unfamiliar surroundings, in a normal bed, and my sleeping is the sleep of the exhausted.  But, once I’m up, I’m up.  No ifs and or buts.  I have to unkink my back, or find a way to get out of bed without triggering liver pain.  Basic, predictable stuff.

Instead of leaving me be, though, I get all this solicitous, “Do you need a nap?”  or “Wow, anybody who knew you were sick wouldn’t believe you were ill.”  Passive aggressive crap that gets on my last nerve.

Good friends and kind-hearted people may not mean it aggressively, but I find it very challenging because *I* am not comfortable with my varying levels of abilities from day to day, and because *I* am worried that I will lose my benefits because I’m not suffering “enough”.

“Enough”.  Someone needs to suffer at an appropriate level to be “enough”.

Do you hear that crap that’s in the back of my brain?

Being ill goes against the grain which illustrated everything that America is supposed to be about.  One of our family comments includes, “Suck it up”.  Seriously.  I think about a conversation with my brother when we were selling our Mom’s condo, and our sister was running late to help clear the property of my stuff on the last day of packing up to return to CA.  I explained that all the change was hard for her, and that this was a close of a hard chapter in all our lives.  Our big brother, Golden Boy, blew a raspberry and reminded me that she needed to suck it up.  I laughed then and I laugh every time I remember it.

When that same big brother was going through brain cancer, he was in a lot of pain and fighting the side effects of the treatments.  How did he fight?  By showing up and participating.  By finding something to enjoy every day, regardless of his struggles.  By getting out and running 5 to 10 mile a day.  Think about that – he was dealing with brain cancer as his life slowly edged away, and he was running to try and work off his attitude problem and real pain so that he could participate in life and not pick on his family or friends.

Being a decent person is like exercising.  It’s a choice every day.  The same thing goes for being an active person, and choosing to participate in life vs. sitting on the side lines.  Some days you stay on the couch, and sometimes you suck it up and you get up and you work through whatever issues you may be having.

Sometimes the illness wins.

Sometimes you win.

Traveling is just like that issue and choice, too.  I can be sick anywhere.  I choose to travel despite being sick because I’m not dead yet, and I want new experiences and memories to help me get through those days when I can’t get out of my own way.

Does it mean I should be driving?  Not necessarily.

Does it mean I make the best choices when pushing myself?  Not necessarily.

But, I suck it up and I try because I’m not dead.  Not yet, and hopefully not any time soon.

So, when I’m traveling with you, please don’t hover and please don’t challenge the “visibility” of my illness.  Like all wild animals, I hide what’s going on as it’s a survival mechanism.  My battery may be on red, but I’m going to go and go and try until it’s drained dry and I’m forced to sit.

That’s just who I am.