In looking for the right tone to convey the difference between slowly dying from exhaustion and lack of air, vs. being on a tight, and direct roadtrip to the end, the above graphic helps a lot.
My Doc has been great to say that his job is to keep me alive to be able to try the innovations coming in COPD treatment.
That being said, though, I neither want to die in penury nor from aggravation with all the side effects the medicine causes. I am a princess, I admit it, and I have zero tolerance with being over-stimulated and angry all the time due to the medicine I’m on causing irritability. Seriously? I’m already trying my best to keep it together – don’t put me on medicine that makes my skin crawl and then expect me to be Suzie Sunshine all day…
It’s just not reasonable, and I don’t want to live badly enough that it makes it ok to be b*tchy 24 x 7 x 365. That’s just too cruel to the intellect behind the illness. Especially when I have a naturally grumpy personality to start with each day.
I have been trapped in this body since birth. One of the few children that survived to be born and thrive as carried to term by my incredible mother. A legacy of a bloodline that included an asthmatic great grandmother, sent here from Scotland to live or die. (She gave birth to 19 children – 13 of whom lived – and she made it to an amazing age of 86). On the other side of the maternal family tree: A grandfather descended from a depressed woman who was confined in the insane asylum from about his 1st or 2nd grade year of life, until after my Mom, his daughter, was born in 1936. His brother, an uncle who was a dwarf (from that same paternal line within my maternal branch of the tree). An uncle who was deaf (from the maternal line). Plus any number of Alzheimers patients in that generation on the maternal side.
After that, we then come to my Mother’s siblings, 3 of whom had COPD, one of whom also battles frontal temporal lobe damage (a kind of Alzheimer’s). 3 out of 5 who passed away before 72. Compared to the 13 born in the prior generation, all incredibly long-lived, and 1 of whom still lives and enjoys life.
So, I tell you all that to tell you this – I get it about the frailty of life and the need to be willing to suck it up and battle one’s way though our existence for however long we have on this earth.
However, on my journey to get this far, I’ve made a lot of decisions. The main one being heavily dependent on the Hippocratic oath: “First, do no harm”.
I’m a big believer in understanding the risks and making a conscious choice.
So, it’s making me crazy that I’m applying for disability to leave work permanently, and being challenged on all sides by well-meaning friends because “I just don’t look sick enough”. Or, being cossetted within an inch of my life when I’m simply trying to do something physical that’s a normal part of my job, and they’ve taken it upon themselves to smother me. Seriously? I’m not an idiot, and if I can’t do something I’ll either try and fail. Or, *I’ll* manage my boundary lines and limits, thankyouverymuch !
Don’t hover and get in my way to “help” me, as you’re just pointing out my reality and I don’t need a reminder to NOT do something stupid.
Controlling one’s temper is already challenging without giving me medicine that makes my self-control worse.
As I’m juggling the factors involved in when I should stop working (I believe I’m Stage III on the COPD gold scale as my average lung function is about 33% (which was never a problem prior to the last 3 years or so)), but which has become a challenge for my oxygen saturation (ox-sat). I believe I did additional, permanent damage during a work-related trip to China, as my overall congestion increased, and my ox-sat began dropping in 2009 from 100% to a more usual 96-97% this year (2015).
While I can live with the lack of oxygen, I can’t live with the lack of energy. Thinking it was peri-menopausal and not COPD-related, I worked through all those potential “feminine” issues before the only thing that remained was my underlying breathing condition.
The constant exhaustion is for the birds, and the medicine-related side effects are making me crazy. I’m sitting on the pot as I compose this, waiting for the daily bodily function decision of whether it’s going to be constipation or the runs today, and feeling bladder pressure, but being unable to fully empty my bladder due to the latest meds and yet another repaired and pre-existing condition that the meds impact.
On top of all these joys, my eyesight is very blurry (medicine impact), and my right arm and wrist are painful and twinging as I write this while sitting here trying to wake up and start my day at a decent hour. I don’t have osteoporosis (a side benefit of being fat – it forces the bones and marrow to work harder), however, the meds have caused lots of deep-seated bone pain that feels very similar, IMHO.
Add in diabetes risks from the meds they say will help my breathing, and you can get a clear understanding that I’m sick and tired of being sick and tired.
55 (later this month) feels like the new 67, and I’m pursuing my disability benefits with the support of my doctor, as I just don’t want to kill someone due to my inattention while driving back and forth to work. Never mind get fired for turning in poor quality work.
My job is very cerebral, as well as process driven, so I must be able to deliver results in order to be of benefit to my employer while ensuring that we can pass audit or legal scrutiny for any deals I create. California is a very competitive place to live and work, so I am under no illusions that they wouldn’t fire me in a heartbeat if I can’t produce quality results.
I am very concerned that I am going to go through what little 401k money I’ve saved very quickly if I don’t manage to qualify for disability. However, the social security powers-that-be don’t care that I’ve had 3 car accidents in a year. They don’t care that it’s all I can do to pay attention most days as I’m slowing down due to lack of oxygen. They don’t care that I can’t seem to work the Silicon Valley pace that I used to on these meds and with less than 100% ox-sat.
Until I’m no longer able to work (a broadly defined phrase), I just have to suck it up. Since I’m still at work, social security won’t consider my situation until I stop working, creating a Catch-22 for financial survival in the short and long term.
So, we’ll see what the end of this month looks like as I get my Doc to complete the ability to work assessment for daily tasks, and see what it all means to my employer.
Going from being a workaholic to a slacker isn’t easy, so I’m very interested to see how it’s all going to turn out. As for today…
Time to suck it up, take my meds, and head to work. Praying that I see all crazy drivers out there, before I’m in another accident, and that *I’m* not the road menace this morning…
I’m going to a Dave Matthews concert this evening, and I’m hoping I’ll have enough energy to stay awake and not embarrass myself by falling asleep in public.
I hope you enjoy your day !