Testing, testing, 1, 2, 3…

Got through my 6 week appointment with the doc yesterday, and informed him that I have a pulmonary function test (PFT) with date and time mandated by either the Feds or the State on behalf of my disability review.  (It’s hard to tell who sent it – everything is in code).

I was so distracted, though, that I forgot to get his interpretation of the Morgan Scientific category chart which indicates the primary types of lung function difficulties into readily identifiable labels involving COPD disease:

MorganSciPFTmeasurements

COPD disease ranges

I won’t be seeing the doc for another 6 weeks, so this question of “which label am I?” will have to wait until then as I was too distracted by the rest of our conversation.

I’m big on understanding my month over month / year over year stability, so I always get the test results and try and understand them.  I’m not a doc, so it’s more image gisting of the numerics involved in the diagnosis than anything else, but it helps me to feel in control.

So, I’ve tracked my results from Dec 2014 when he handed me some really powerful COPD medicine (as I again turned down thinking about a lung transplant):

Jos 2014 breathing test

At that time, I was listed as “very severe restriction”, when I was exhausted and still working daily, and determined to head for Australia to complete my bucket list item of snorkeling on the great barrier reef before I ran out of the strength to endure the trip.

After returning from Australia, I began the inhaler from hell, the Anoro Ellipta, and this second graphic shows my breathing level moved from a Stage IV, very severely restricted, back to a Stage III, severely restricted, even though the difference on the COPD Gold Scale is less than 3 points between one level and the next in my case.

Jos 2015 Breathing Test

Don’t get me wrong – I’m all for any health improvements I can get.  What I’m not a fan of is trading one problem for another:

  • eye pain, blurry vision, stys, rashes, heart issues / spasms

So, we debated the issue and I stayed on that medicine until August (his 6 month request), and things didn’t improve so much as they morphed into additional issues.

At the August 2015 appointment, where he agreed that he couldn’t do more for me and I should go out on disability to conserve my strength and quality of life, we focused on that next phase of hassle vs. much of anything else.

While we haven’t discussed it in detail, as there’s not an expiration date stamped on my butt, the general consensus for severe to very severe breathing restriction ratings is about 3-5 years until end of life.  A simple cold or pneumonia could take me out, so it’s not like I’m sitting here slowly winding down like a helium-filled balloon with a definite likelihood of an end date.

Instead, I’m looking at what needs to be done to ensure my independence as long as possible, while marshalling my resources to plan for the next phases where I want to be as active as I can for as long as I can, while also trying to measure my likely “time available” to get as much out of life while my financial health and well being permit.

I’m thinking of my own experience as my Mother’s COPD caregiver, what hospice staff said, and the various resources and references used to compare possible life-prolonging treatments and measured outcomes for everyone in this disease class.

And, I’m in the fight of my life for getting the benefits I’ve paid into vs. leaving them behind, unused, while forcing myself to keep on working and fret myself into a wasted life and early death.  Wasted, because I lived longer than anticipated and didn’t die with a nice, quick heart attack, as I’d hoped (presuming, of course, that I didn’t simply die peacefully in my sleep), and wasted because I didn’t make time at the end to enjoy the journey as I was too busy chasing the almighty buck.

So, it’s frustrating to not have any more recent test results for knowing whether or not my breathing is back at the 2014 rates (32-33% lung capacity) as I go before a review board which I presume is determined to decide that I’m a goldbrick.  A faker.

My doc’s latest office notes indicate that the breating capacity is now at 25% for March 2016 (implying that the Anoro Ellipta or Striverdi Respimat, once ended, may have contributed to a worsening of my symptoms).  Or, indicating that it’s just the normal disease progression over time.

I was floored, however, when I was in his office making conversation leading up to asking for actual test results in the full imagery, and got a humorous or flippant reply to just fake it when it comes to the PFT test.

Nonplussed, I looked at him in confusion.  There’s no way to fake these tests, right?  (The old Catholic guilt reared its ugly head – I’m not sick, I’m shirking !)  Pulmonary Function Tests are just that – tests to measure actual performance.  I’m not some old jalopy that can squeek through a smog test by first driving the car for a couple of hours to blow the cobwebs out of the engine, right?

This whole process of living while dying is beyond me.  While I don’t expect a miraculous cure, I do hope to remain stable or improve on my numbers based on what I am and am not doing to aggravate the underlying breathing difficulties.  I want my graphic image test results, and I’m not sure why he’s no longer posting them.

At this point, I have no answers and will simply stress myself out, waiting until after May 10th and the results are in.

Am I a faker?

Should I take my 7-month / no-work / much-more-relaxed-body back into the working world?  Only time and the next series of tests will tell.  For now I have too much time on my hands…

 

WordPress Ate My Homework

Seriously?

I came back today to find a variety of recent posts missing, with only the comments remaining.   Not sure what caused this latest snafu, but I have noticed that wordpress doesn’t like me composing from my iPad from time to time…

Wordpress Homework

And the missing content…

Fat and Freezing

*****

Derailed

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Stymied

*****

So, while it accepted my latest post on Willie’s Stem Cells, I’m going to not post (beyond this blog) until a few days have passed.  My hope is that I will get an answer that will allow me to retrieve the old stuff.

Thanks for your patience.

*****

Yay !!!

Julie M Richardson is a lifesaver !  Took me a bit to understand where to find the button (had to be in the “edit” mode, and then had to go back to a version visible in “Black” ink along the timeline vs. one visible in “Red” ink, then hit “update” button) but she helped me out in the forum, and I’m cured !

Red vs Black

juliemrichardson-rocks

Willie’s stem cells

image

Reposting a link here to Willie Nelson’s interview with Dan Rather, during which he discusses his recent stem cell treatment in passing (and says it was worth it, despite the pain).

It will cost you two bucks if you want to download it and judge for yourself about what Willie thinks:

  http: //www.axs.tv/buy-axs-tv-programming-online/buy-the-big-interview-online/

Thanks to another SOB’er  for pointing it out to me, because I was scouring the net in the hope I’d hear more about his progress now that he’s at the 6 month mark, post-surgery.

I’m not asking for unlimited time on this earth… What I am demanding are treatments with less damaging side effects, and the freedom to try new things that might work better than conventional means.

I’ve always been at the forefront of innovation, a single, independent woman, working for companies focused on intellectual property, digital media revenue streams, reduction of design lead times via computer aided design to bring the time-to-market for new products from 3-5 years down to 18 months or less…

I come from a long line of people, and especially strong women, who are rule breakers and see no value to following rules just because it’s the way something’s always been done.

Heck, if I’d listened to my childhood programming about my expected role in life, given the fact that my COPD is based on a birth defect that could have killed me at any time, I’d have been another version of the tragically romantic daughter in Steel Magnolias.

I’d have married, had 2-3 genetically-risky kids, and still be living in a tiny town outside of Boston, reading, and hoping to see more of the world – someday – after the kids were raised, and if the combined medical expenses for me and them didn’t break us financially to leave us in poverty.  If my honey and I made it to retirement (at 67-70-ish), only then would I have been able to spread my wings and finally traveled, seeing the world for myself.

What many of us seem to forget is that we never get enough time in this world, with the people we love and who love us, just enjoying each other and the wonders all around us.

I strongly feel that stem cell treatments may offer an opportunity to add another chapter to my life, even if it doesn’t change the eventual ending.

If the average life span survival rate following a lung transplant is 3-5 years before quality of life again declines, is it any wonder I’m not seeking perfection from a stem cell treatment?

Willie looks like crap in the pictures I took from the interview.
He’s 82, so it’s reasonsble there’s been a bit of wear and tear.

But, if he’s giving the treatment a thumbs up, it’s another piece of data to consider as I evaluate my quality of life options moving forward with this worsening disease.

Naysayers have their place, but not when they cite lack of regulations or government approval before considering a treatment. Not when it’s the same government that used to promote cigarette smoking and rule out canabis – completely ignoring its medicinal benefits. Medical science and breakthroughs are not all black and white to my way of thinking.

So, here endith the rant. I know I won’t change anyone’s mind that believes stem cell treatments are all smoke and mirrors, but I wanted to put my dissenting thoughts out there.

For now, I’m putting away my soapbox, and hoping all you SOB’ers * have a lovely day.

**********

*  KEY:

*  SOB’s or SOB’ers = (get your mind out of the gutter – it’s not THAT definition, ha ha) = Short Of Breath-ers

Stymied. Angry. Frustrated

GuardianAngel

Not sure what’s going on between my ears, but last week was a struggle.

Got a couple of verbal body blows that have been haunting me.  Any time something sticks with me that long, there must be some truth in it.  So, fighting against the truth versus what I tell myself is going on has been a struggle.

Can’t say I’m out of the woods yet, mentally, but I’m doing what I can each day to absorb the message and keep on breathing vs. fighting back.

You can’t learn, if you’re stuck in your own viewpoint and scrapping to be “right”, so I’m focusing on trying to understand what I can learn from this very challenging situation.

On the one hand, the powers-that-be for coping with COPD recommend one having a therapist for dealing with care issues and emotional / mental health issues which may arise.  I’ve never had one / believed in one, so it’s an extra hard struggle for me.  Add in the fact that the stem cell treatment plan encourages one to have a therapist, and I decided to bite the bullet and get on board.

Found a talk therapist who deals with grief, life coaching, etc., and signed up with her about 6 months ago.  Very interesting woman to talk to, but I can’t tell if the talks make any difference as I think I know it all about my disease progression, and don’t have anything really to work on.  Until we got to this week, and the whole “anger” issue came up.

Yes, I’m angry.

Yes, life is unfair and that makes me angry.

No, I can’t change the hand I’ve been dealt, so getting angry is pointless.

I understand all that, and think I do a good deal letting the anger pass by working it off through keeping busy and not focusing on things I can’t change.  However, just writing this has me tearing up, so maybe there’s some further housekeeping that needs to be done on this topic.

Yes, anger is neither good nor bad. But, anger can eat one alive if you let it.  I don’t think I’m at that point (or ever been at that point with regard to the hand I’ve been dealt), but maybe I’m fooling myself.

The topper to my difficult week, though, was being called out of the blue by the lawyer and told that I did something wrong that could harm my case (I wrote a letter that was too long and too well-thought-out).  Being verbally dressed down, and having no way to find a win-win viewpoint because the lawyer is always right, and I am just some incompetent idiot that he has to help on his way to his own payday.  Sheesh !

Ltr example

(The letter is purposely fuzzy so that you can’t read that content while still being able to see how long it was once finished).

Seriously, though?  I did what he asked me to do, and I got slapped down for it.  (Throwing up hands in a plea for mercy or in capitulation over the craziness of life).

I am not one to play games, even though I’ve based my life on negotiations and diplomacy / game playing is part of that world.

Derailed

image.png

I don’t have a lot to say right now because I’m frustrated and trying to keep myself in check so that the anger doesn’t turn into pointless despair and / or depression.

I know things will get better given time and healthy movement (vs. sitting like a sloth), as cleaning / movement are very healthy outlets for anger and frustration.

Right now, I’m trying to motivate myself to go to the YMCA, and yet I’m still sitting here, “thinking” about it.

I generally don’t like to consider myself an angry person, yet anger seems to be my go-to emotion when frustrated or stymied by an unresolvable situation.

The therapist told me this week that I’m an angry person and left it at that.  Seriously?  Could you expand a little more, as I’m just not seeing it as a problem that shapes my life.

On the things I can’t change or control, I try to write it off to help clean it out, especially if I can’t change it.  Purging my emotions to exhaust myself of my anger has been my solution for years and years.  So, can you expand on your thoughts a bit more, please?

Do I have something I need to work on, or work on in a different  manner?  Expounding on your thoughts would have been good, as I’m sitting here chewing on my own tail and it’s not pretty.

Add into this weeks events the neighbors from h*ll, the Bickersons, alternately cooing and fighting, and blasting Eminem’s rap music when they are starting their days…

Then, the topper, to be called on the carpet by the lawyer for writing a note to my boss in Germany – AFTER he told me to do so – because it was too detailed, too demonstrative of my ability to function at an executive level – and I’m just tired.  Tired and frustrated.  Handicapped is not incompetent.

Trying get my handicapped status confirmed when it’s a worsening birth defect is particularly challenging, as I’ve spent my entire life hiding the effects of this disease and trying to pass for normal.  So, needless to say, I hate having to deal with being vulnerable to the point of game playing because that’s just not how I roll.

At this point, I’m going to take my own advice and head for the beach to clean this garbage out of my brain.  Skip the YMCA for now.  Recharge my batteries.  Hope I find something pretty to photo in my explorations to help recharge my batteries.

image

I hope you have a good day wherever you may be.

Freezing & still fat – COPD Adventures

Maxine-Chilled

One of the things that I liked about going from 140 lbs to 200 lbs after I moved to California was the fact that I was now warm.  Actually warm.

I didn’t have to wear 15 layers, and still be freezing / sweating / freezing.

I didn’t have to have multiple sizes of clothes so that one thing could fit over another in layers because I was so chilled.  Chilled constantly.

So, it’s been quite an adventure to warm and cozy; awoken to take care of business in the middle of the night; and then descending to freezing when the ambient temperature in the room is fine, and there’s not enough covers on any bed to re-warm my chilled body.  I’m thinking part of this is the joys of peri-menopause.  But, as I’m reading on the COPD.net website, I’m also finding out that this is a new joy of my disease.

Seriously?  I spent all this time getting warmer by adding layers of fat, and it’s no longer enough???

Key quotes from the COPD.net website and editorial team were very educational:

* * * * * * * *

It’s no secret that weather changes can have quite an impact on COPD – cold weather can be harsh on the lungs and warm humidity can make it tough to breathe. But what’s weird is when it’s hot outside and yet you still can’t feel warm!

One of our community members asked us: “My loved one with COPD goes through times when she just can’t feel warm. She shivers and despite an electric blanket cannot warm up. Does this happen to you? Any advice?”

This feeling of unyielding cold is not uncommon! Many of you mentioned experiencing chills and the inability to warm up – you are certainly not alone:

 – I thought it was just me! I am so cold all the time!
 – Now I know I’m not nuts!
 – Even my hair feels cold!
 – It sounds like you’re talking about me!

Key advice that I’ve used through the years:  

“Hot shower and a heating pad”

  • I use a heating pad, wear very thick socks, and take very warm showers when I get cold I have also used my hair dryer to blow hot air all over me to help warm up
  • Wool blanket, heavy socks and my heating pad and i still can’t get warm
  • Sometimes I sit in the shower for twenty minutes just to feel the hot water on me

“Lots of layers. Even in summer”

  • I wear so many layers it’s ridiculous. I wear long underwear until it gets in the 50’s and I always have a sweater or sweatshirt on
  • I never go anywhere without a sweater, even if the outside temp is 90.
  • I when I feel this way I just have to pile on the layers and stay in bed until I’m thawed out.

* * * * * * * *

Needless to say, the two points highlighted in red show my normal go-to solutions.  But, having gone through another bought of freezing this morning, I’m sitting here in a sweatshirt and my PJ’s searching for solutions to try and get warm / stay warm without overheating.

Anyone else with COPD have experience with this particular problem?  Inquiring minds would love to know…

The Wolfman

image

Well, today’s silliness involves auditions for a new Wolfman at my childhood haunt,  Clark’s Trading Post, located along the Kangamangus Highway in the White Mountains of New Hampshire.

Click here to read the full article on the Wolfman Auditions.

There is a passing reference to  COPD sufferer (a former Wolfman), and how he’s managing to stay involved in the fun despite the ravages of COPD to make one’s world smaller.  I was very saddened to see he was only 58 and on oxygen and in an electric wheelchair, but also happy to see that living in snow country (i.e., the meaning behind the name, the “white Mountains”), that he’s continuing to get out and about despite the weather challenges so common to New England, but especially to New Hampshire’s lake region.

It just goes to show – life is what we make it.