ELDER MUSIC: Together at Home 3
A TGB READER STORY: On Being Alone

Two Topics : M.A.I.D. Drugs and Sitting

I will get to Sitting in a moment but first:

Answers to Two Questions About Medical Aid in Dying Drugs

On Friday's post, there were two more questions about these drugs in the comments:

From dkzody:
Do your death drugs have an expiration date as so many of our compounds seem to have, and if so, and you don't use them before their expiration date, can you get a refill? I hope this doesn't sound crass.

Not crass at all, dkzody. Yes. The expiration date is one year. I hadn't thought to ask, if I live that long, about a refill. Just out of curiosity, I will do that. If I do need a new batch, I would expect to pay full price again as it was a straightforward commercial transaction between me, the customer, and the pharmacy.

From Martha K. Backer:
As I'm listening to you and Alex, I found your 8/12/19 Man Plans and God Laughs as part two today, you had said the cost is between $3,000 and $4,000 and doubted if Medicare Part D pays, a privilege to those with the funds.

I was operating on old information when I wrote that post a year ago, Martha, relying on what I had been told in 2017 or 2018. Since then, the drugs used have been changed as has the price. I paid $600 plus a delivery fee for the drugs this month and no, Medicare does not cover them.

If It Fitz, I Sitz

KittyInBucket

This meme, always written in that peculiar spelling, is a long-time feature of the internet and it still makes me laugh. It is such a cat thing to squeeze into the smallest available container to snooze. Why do they do that?

You don't need to answer. I mention it only because it is the image that first came to mind when I was considering the time I spend sitting these days - although not in seats too small for me.

Recently, I became a bit alarmed when I realized that I sit nearly every waking moment. At the start my day, after I've attended to morning ablutions, I fire up the computer, read the news and answer some email while sitting at my desk.

That can last for up to a couple of hours as I fuel myself with coffee for a long day of sitting.

After that, I'm on my feet for a short awhile to shower, dress and go through some light (sitting again) exercises. Then I'm upright again to make breakfast and, after sitting to eat, wash up the dishes. But soon I'm back to the computer (in a chair, of course) and then I move to another chair for a session with the nebulizer before I'm back at the desk for blog and other kinds of work (or play) involving the internet.

Throughout the day, I sit for meals and I sit to read or talk on the telephone or watch a movie in the evening. In between, I take a pass at dusting and other light housekeeping chores but it is easy to overdo (gasp!) by moving around to fast and I am finally convinced that I need help so will soon hire a regular cleaning service.

My major health difficulty is not cancer, the only symptom of which is (so far) is pain that is being well controlled with over-the-counter medications on a schedule set by my hospice nurse.

The hard part, and it is a big one, is living with advanced COPD. I have good days and bad ones but either way, walking anywhere much farther than the next room can leave me heaving for breath if I'm not careful. And I am not careful a lot of the time, forgetting that I have a serious lung disease and walking too fast.

Taking out the trash, a trip to the mail box or the one flight of stairs to visit a neighbor are undertakings akin to a 10-mile hike. I move through these “journeys” v-e-r-y slowly as I do the supermarket every 10 days or so.

The excellent nurses at pulmonary rehab last year taught me about preparing myself both mentally and physically while planning expenditures of energy – which is just about anything I do except sit. They gave me an entire binder full of tricks and tips on managing COPD.

Even so, I often forget. After all, for 75 years I led a remarkably healthy life mostly on bodily autopilot. When I said go, my body went, so it makes sense that I now stall sometimes due to over-confidence.

Which is not to say that it doesn't annoy the hell out of me. It's not for nothing that I still miss the pace of New York City.

Sometimes when I overdo (which to a healthy person can look like an extremely lowl level of exertion), it can take four or five minutes of heaving for air, even with the rescue inhaler, to be right again. When that happens it goes beyond annoyance to fear even though I always survive those bouts of breathlessness.

As I ruminate on this, I realize how lucky I have been that nothing serious happened to my health until these late years. It is frequently said that the common maladies of age – cancer, stroke, diabetes, heart disease, etc. - begin to appear in large numbers among people during their 60s.

So, compared to a lot of others, I come to this physical extremity later in life, just lucky to have had so many years free of health issues.

For the 20-odd years or so that I've been studying ageing – while watching myself age from my mid-fifties to now – I have never wished to be younger than I am. There is no pride to be taken from that, only that I have been my own best guinea pig in tracking changes through the years.

So it is for the first time now that I occasionally long for my younger, healthier body that existed not all that long ago: when I could walk to the trash bins and mail box without pacing myself. Shove the vacuum cleaner around the house without needing to stop for breath every few feet. Carry ALL the groceries in from the car in one trip instead of three, short, slow ones.

The thing is, COPD never gets better so unless I want to be annoyed to death - ahem, I need to take a cue from the cats: I sitz.

IfItFitz2

Comments

Although I take your predicament seriously, Ronni, I had to giggle when you wrote, "...I occasionally long for my younger, healthier body that existed not all that long ago...." Sometimes I catch myself thinking, "Oh, to be 75, again." As you probably recall, I am 82. Not being able to go to the gym these days is difficult for me. I kid myself that the yard work I force myself to do is nearly as good for me.

I won't say I sympathize much less empathize because no one who is not going through it truly can. But I did take care of my mother during her last year of dying from COPD. (And I find myself holding my breath while reading your descriptions! ) But I am curious that you do not mention being on supplementary oxygen? Has that gone out with new and better drugs?

Aside from consciously chosen exercise, I think most people in the states sit most of the time - working, driving, reading or watching television. I don't think most of my Mexican friends and I KNOW the workers, ever sit down! Guilt might be one of the things you leave behind. As for the frustration and annoyance at the slowing body, I certainly hear that! And I am, thank good genes and a hatred for the smell of cigarettes, very healthy for 77. Could change tomorrow!


I am SO glad to hear that you've decided to engage a cleaning service! And sooner, I hope, rather than later. The contentment and relaxation that this can provide might extend your life significantly. Believe me, I know how hard it can be for those of us who have difficulty in paying someone, or even just allowing someone, to do for us, what we have always done for ourselves, but at this point in your life I think it's more than okay -- it's really in your best interest and more than justifiable.

And the cats in containers -- I think I've mentioned here recently that we've been dealing with a colony of feral cats in our neighborhood for about a year now. I have to admit to setting out cardboard boxes and sacks for them to explore and it's been interesting watching them claim their spaces and settle down next to each other in their little "beds" outdoors at night now. They've also been curling up in empty flower pots. It would be interesting to see how much more for themselves cats would do if they had opposable thumbs.

May you have a great week Ronni! (Despite the Republican convention.)

I must admit I sit a lot now too. Different reason of course. So I understand that part, also understand I don't like it. I need a shirt that says "Groaning Old". I do have one that says "if it ain't achin, it ain't movin".

Love the cats.

I am glad to have had the experiences I've had in life but I do miss one thing about my younger years: endurance. I worked about 60 years for this "vacation" and I want to make the most of it, but body ability holds me back. Like my Mom says, at 96, one has about 4 hours in the morning then that's it. The rest of the age problems are surmountable to me. B

I love the cat picture and cartoons – that is so much like what cats do. It is difficult after so many years to adjust to a body that is not willing to go as we please. I feel for you for this COPD and breathing problem.

I don’t have this disease but was diagnosed with acute heart failure a little while ago. It has affected my breathing a lot, too. I have to go up steep stairs (and tall ones) to my bedroom and would have to stop for 3 or 4 seconds after each step. Somehow I remembered the Lamaze technique I did for childbirth and started the breathing going up stairs, now I can go slowly up at least 8 steps and not feel too bad. The cardiologist wanted to implant a thingy noodle in my chest to see what’s going on and I did not want to, but I guess I will if he can figure out what's wrong and give me my breath back. Take care of yourself Ronni and don’t overdo it, having someone cleaning up your place sounds like a good idea – me, I don’t look at the dust anymore….only my cat is seeing it.

Ronni,
I relate to what you say. I KNOW I sit too much. I also have COPD———and I NEVER smoked! NOT ONCE! When I was diagnosed with COPD I was furious. I always thought that was a smoker's disease. Well, it turns out that my chronic life long asthma had morphed into COPD. I rely on my hebulizer several times a day and I sleep with oxygen every night. Not being able to breathe, is the scariest thing, isn't it?

I hope you will not feel guilty aboot having a cleaning service. OR about sitting. Guilt is really unrewarding.

It would make me ~~and many others happy if your death drugs had to expire. I promise we will help pay for the refill. It would be a joy to do do.


HUGS ( virtual ) from Houston

Oh yes, hire someone to clean immediately, why wait? Once into it, it can be a bit of fun, but you.........we all............definitely have better things to do with our time.
I too chuckled at thinking fondly of being 75.........I had the first of those moments yesterday, thinking how just 5 years or so ago, at 72, I seemed to manage the heat and the heavier aspects of keeping my gardens going. I'm amazed you are still doing a big shop every 10 days, how about doing curbside pickup? I love it, so easy. A good day for you.

Yes to the cleaning help! Yes to the curb side pickup! Save your energy for things you love! And we all love you.

As always, LOVE the cats!

As usual, detest that my 83+ Y/O body will not do what I want it to anymore. I don't have COPD or any other life-threatening ailment (that I know of), but I was once a high-energy, get-it-done person. Now, not so much! My back and legs won't bend; my shoulders won't lift or dig, so there goes a lot of the activity I once enjoyed, like gardening and playing with my cats (of which only one now remains, and at almost-15 she still likes to play).

I can't even contemplate watching the Rethug convention where a bunch of overwhelmingly white, well-off cultists will nominate the would-be Emperor of tRumpistan to ruin the nation for another 4 years. Many more older Americans will die of COVID-19 daily as he continues to deny and minimize.

I join you in sittinz too much. On top of the cancer, I too have COPD, Emphasema, and fibroids. I find I can walk mostly normally in the water, and that's where you can find me when I can get to it. My Y is by appointment only now.
Try not to sit all day. I have a sore on my tailbone from all those months in bed or in a wheelchair. Despite careful care, It is still with me.
I really appreciate all the information you give us.

4 years ago I completed a 10 mile road race and now? I'm basically sitting all day or in extreme pain, discomfort and breathlessness if I move around, walk, stand.

I can so relate to your post. The speed of deterioration can be frightening. The loss of all I took for granted like road racing till 90? Ha!

Simplest of things seem unreachable some days, like grocery shopping. Pacing myself has been an enormous challenge. And pacing I must, to keep sane.

Get the cleaning service Ronni and deliveries.

XO
WWW

Ronni, it's always good to read your posts. I am only 70 but have various heart problems which leave me breathless and can empathise with the frustration of you not being able to do all the things you used to do. In the UK we have online deliveries where all the grocery shopping is delivered to the front door, would this be possible for you? I started to employ a window cleaner this year and if you don't have one I thoroughly recommend it. And get a cleaner, don't waste your energy on dust! There are fewer than 100 days before your would be dictator gets voted out, we have 4 more years - we were fortunate to have our youth in the 60's and 70's, I would love to read about yours!

Like Bernie, I too would like to have the endurance I had at 45. And the ability to multi-task without even thinking about it. I miss those things. I am doing my best to enjoy my ability to live an agile life, to come and go as I please, because I know that could all change. The library just delivered a book, "Joyful," by Ingrid Fetell Lee that talks of the surprising power of ordinary things to create extraordinary happiness. For me, agility and ability do that.

Although there are no fires near us, the smoke, ash, and fumes from the ones burning throughout California have settled in the San Joaquin Valley making it hard to breath for those with asthma and COPD. Even those of us who don't have those issues find it hard to breath when outdoors.

Thank you for the answer about the expiration date on your meds. You know, I'm hoping your quality of life is such that you have to get many refills.

Ronni - are you using supplemental oxygen? From your description (relying on a rescue inhaler when you are seriously out of breath), it sounds like not. If COPD is the main thing making your life difficult, your health insurance will definitely cover an oxygen concentrator. My mom had COPD and lived with (and hated having to rely on it) an oxygen concentrator (and portable oxygen tanks when she was out and about) for the last 5 years of her life. She didn't have a choice, her lung capacity was just 30%. You would be much less tired if you were on oxygen - guaranteed.

love,
Chris

Chris...

Yes, I've used supplemental oxygen for the past year at home. Not full time but during the day. I don't use it away from home because the weight of the tank exhausts me - it's worse than going more slowly without it.

Thanks for asking.

You have a good attitude Ronni - Keeps things in perspective. I've heard that instead of saying "why me?" we should think "why NOT me?" We are all here on Planet Crazy only temporarily and there are no guarantees for good health or longevity. I have had chronic pain since my 30's, getting somewhat worse now that I'm 70. As I look down the road, I'm not naive and I expect to have to deal with more limitations, altho I'm not Debbie Downer and do all the best practices to avoid further decline. Doing our best is all we can do.

There use to be a hilarious cat website called I Can Haz Cheezborger with cat photos submitted with the funniest captions. I use to keep a collection on my work PC for laughs at break time. The website was sold and kind of lost its luster. If It Fitz I Sitz reminded me of that website.

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