I’ve wondered often why I like hospitals, and why my earlier days in life are still so much a part of today. I guess it’s because I always felt so cared for there, despite the extremes in my day to day circumstances.
For me, life has always been a struggle to breathe due to a pectus excavatum at 6 months old, and the rest of my life has revolved around efforts to fix me, keep me well, and have a good life despite shortness of breath. When the internet came along, the first thing I did in the 90’s was to research, “end stage+asthma”, to be able to self-educate about what my future might look like since I was afraid of drowning, trapped in my own body.
In the end, it all comes down to breathing, which is now at the COPD stage.
When I first moved to California, I was all about forgetting my origins. Having grown up in a small bedroom community outside of Boston, MA, where no one moved for 200 years and everyone was into your business, I embraced escaping my life with a fervor I’ve never felt before or since. I loved the anonymity to make my own mistakes and embrace new choices moving to CA provided. It’s helped me define who I am, outside of my refurbished body. It’s helped me make mistakes and learn and grow, without looking like a fool to people who loved me but didn’t (and never will) understand me.
As I’ve aged, however, I’ve noticed themes reoccurring in my life. Mostly having to do with my early life experiences, and determination to be more than the body I am trapped in. Work-wise and in my personal life, I seem to go from disaster to disaster, and triumph to triumph, with very little in the middle that isn’t one extreme or another.
In this case, I’m dealing with my decision to stop working as I’m entering my 55th year.
I may not be as old as I feel, but the picture with this blog shows how I feel I look most days. If one is being kind, they might call me a “handsome” woman, but I have never qualified as pretty. Mostly, I’m perceived as harmless, which is fine by me. You can get away with a lot, in terms of taking risks without causing a lot of drama, if no one ever looks beneath the surface of who you appear to be.
However, while I’m still in my right mind, most of the time, I am noticing a lack of sharpness, and a lack of concern about that loss of self-stimulation, that makes me feel the COPD is progressing faster than anyone wants to talk about.
I guess I’m just sick and tired of being sick and tired, even though most days are pretty good.
I have little energy left to do anything other than go to work or come home and rest. Certainly, things like cleaning and laundry take a very major back seat to simply trying to stay involved in life and breathe. Is it laziness? Or, is it efficiency? Until I’m on a scary episode of “Hoarders”, I’m hoping we’ll never know. Sitting here doing this blog or making jewelry are the best things I can do with my time, as they use very little oxygen as my body is mostly at rest. Neither activity will ever pay my bills or sustain my life, so I’m all about testing the boundaries for practicality regaring my cognitive abilities as I figure out what I’m allowing into my life by admitting I can’t keep up.
55 appears to be the new 67 (retirement age) in my case. Will I lose my license? Will I run out of assets? Or, will I work myself until I die (to never collect the social security safety net I’ve paid into for the last 42 years of working?) Only time will tell…
As the doctors have tried to deal with my peri-menopause (oh, joy!) due to this same aging body, however, the newest one has determined that I now am diabetic, making me even more aggravated with monitoring every breath I take and every morsel I eat. I’ve always been a “conscious” eater, so I resent like heck the need to journal every day all day about what I’m doing to satisfy someone else’s prejudice – especially the part where I have to re-prove my bonafides as a refurbished person to the medical community. However, I am compliant with the process, even though that same newer Doc has zero bedside manner and never asked to see the diary she asked me to keep. Crazy.
However, how I got to her is a whole other story in itself. Not going to go into that now, as it’s boring. Most talk about health issues is boring, so that’s a side topic for another day.
To recap… Following a ridiculous car accident in September 2014, where I rear-ended the woman in front of me at a stop light because she stopped on a green for no reason at all, and I had to bear the blame (and do the self-examination to determine WHY I wasn’t paying attention enough to hit her in the first place when she made her idiotic move), the past year has been an odyssey of trying to figure out what’s wrong with me for lack of attention. Mostly, I’ve come to believe it’s lack of oxygen combined with exhaustion.
On the day I was due to depart for a long-anticipated trip to Australia in December 2014, my regular Doctor (the saint) pushed some COPD medicine across the counter to me as we were discussing lung ablations and other advances in treatment. This Doc already told me I was going to die in 1996 – if, and I quote, “didn’t do exactly what he was telling me to do“. So, while I respect him, I’ve already outlived his histrionic prediction. Clearly, we both have some value to bring to the relationship, so we’re still working through it. I thank him every day for working with me, too, as I’m sure it’s not easy for a highly trained professional to deal with “how do you know???” questions from an informally educated, largely-self-schooled, know-it-all-patient.
After his relevant but ridiculous prediction about my death, the battle of wills has continued with me doing what I think is right for my body, while backing up my arguments with reasoned medical research and pushbacks for justification from him about his treatment choices and why I disagree with the effects they may be having on my body.
On this particular December day, he stated that a lung-ectomy or lung ablation wasn’t the right choice for me, and that a lung transplant was my best option for survival. Seriously? Not going to happen. Not with my immune system, sensitivity to medicines, and the high failure rate of lung transplants. 52% success for 3-5 years following surgery is not good enough for me. Never mind the $100k to $300k in medical costs involved in the procedure. Don’t make me worse in an effort to try and make me comfortable. I don’t think that’s too much to ask.
So, that single moment in his office and an additional 2 car accidents in May 2015 have lead to me learning more about COPD and what stage I’m likely at as this disease progresses.
No one in the medical community wants to give me any kind of prediction so that I can make next-stage-of-life choices for myself, so I’m again pretending to be a research librarian and figuring it all out as best as I can.
To the best of my ability to tell what’s going on from all the tests and stuff that have been run over the years, I’m at stage 3, with 33% lung capacity.
So, I tell you all that to tell you this – I don’t know how I’m doing, and am looking for some sort of kick in the pants to show me the way to sucking it up and getting on with life, or for the powers-that-be to agree that I most likely have 3-5 years of quality of life left before I reach the end.
I know, that’s morbid to think about.
But, from my point of view, it’s more morbid to worry that I’ll lose my job due to an inability to keep up from lack of oxygen / ongoing exhaustion, than it is to raise my hand and ask for an assessment of what’s happening to my body.
My favorite is the latest test that I asked to have run – a CT scan – after my sainted doctor of 22 years handed me COPD medicine (that could kill me), and then told me that “we don’t even know if you have COPD !” when I had a follow-up appointment with him in April. His remark was in response to my complaints about the side effects the medicine was causing, and after having taken the medicine for a month.
My immediate, internal response was to the point. “Seriously? Then why give me a medicine with documented risks and side effects (heart attack, instant death, blindness, rashes – and, my favorite – arthritis), if we’re not sure that’s what’s being treated ? ? ?”
Don’t get me wrong – I wouldn’t have stayed with my pulmonogist for 23 years (since 1992) if he wasn’t a great doctor. But, I do get tired of having to do my own research and recommend my own treatments when the best modern medicine can do for me is further complicate my life with damaging side effects.
So, while I’m going through all of this assessment stage, I’m trying to keep employed and pay all the co-pays and extra costs involved in running these tests. Yes, that’s where all my “extra” money goes. I make, and spend, a good paycheck, and have “nothing” to show for it. Well, this is what surviving is all about. Making it work for me with whatever resources I have available.
Despite Obamacare, my insurance company is useless about managing my health needs according to what the best doctors out there recommend. A pinhead accountant calls a CT scan (as required by Social Security Disability to diagnose COPD) “experimental”, and I get stuck with paying for all of this. Thank heavens I live beneath my means…
Clearly, my hobby for 2015 has been trying to figure out what my longevity may be, and trying to make the most of my life while not doing additional damage. As you can guess, I don’t ask for much, LOL.
Since the Social Security Disability Insurance department doesn’t want to put anyone on the SSDI rolls until they are sure you’re dying, and their own bluebook information says that I should already be on disability due to my lack of ability to process oxygen well to keep my body going, the next little bit of time is going to be very aggravating as I work to figure out what’s going on, and whether or not it’s time for me to stop working. Truly a Catch-22 for trying my patience.
I’ve been working for 42 years. While I would like to continue working, I don’t want to be a risk to other drivers on the road, and I don’t want to screw up at work because I’m not thinking consistently or clearly 100% of the time.
Therefore, this blog will be used to detail whatever little thing is going through my tiny mind as I try and keep abreast of circumstances, both at work and at home, for remaining healthy and as independent as possible for as long as possible.