As in, “If I have to tell you I’m ‘fine’ one more time, I won’t be responsible for the consequences”.
** I have yet to master the art of the selfie, so this picture is the best I can do to illustrate just how ‘fine’ (and aggravated) I am. **
While I’m recovering from the congestion and cough engendered by last week’s “exotic” travels, I’m also busy juggling the finances trying to get the electrician to inspect and repair things at my home. I’m also trying to wrap up details for Christmas before leaving town, as well as making sure I have the budget and details covered for my Christmas cruise. Oh, and debating the cost of the mobile home skirting job with the handman who has been such a big part of my life. (Yes, I’ve an Eldon of my own, haha).
Busy, busy, busy. So, let’s slow things down by taking yet another nap.
Unfortunately, I have a holiday show on Friday and zip prepared for it. Being unable to do everything, and having already used my stockpiled energy to entertain a guest over Thanksgiving has left me worn out and cranky.
I do keep reminding myself that I’m on disability for a reason, and that this inability to keep up and stay awake is part of why I need to accept my limitations, but it’s not easy accepting in my heart what I know to be true in my brain.
Whatever it is you’re doing, I hope you’re having f7n and better than ‘fine’.
CBS Sunday Morning had a great profile on COPD Awareness following Thanksgiving.
One of the things that stuck with me the most was the key phrase that I heard with my Mom and again with myself. “When you’re diagnosed, there’s a 3-5 year life expectancy”.
While that may be true for some people, I’m here to say “Phoey!” and to tell you to keep on fighting.
Not all versions of the disease are the same.
Not all sufferers with identical statistics for FEV or FVC1 are the same.
There is so much that goes into what you do to remain healthy.
What side effects are risked by the Rx’s you consume.
Whether or not you’re depressed (another side effect).
Whether or not you feel entitled to being healthier than you may be (thus, setting up a list of frustrations for you, that show up in your overall health as you’re busy fighting yourself AND the disease).
We are not our various ailments.
Rather, we are who we are and the challenges we face are just that – challenges.
So, do what you can when you can. Rest when you must. And take care of you while we learn about COPD together, and figure out what works to keep each of us healthier than not.
I love people. I love my friends. But, everyone drives me crazy.
Mornings are never good for me. Even sleeping on a slant (so that my lungs fill up less), I have to spend a bit of time walking around clearing out my lungs. Yes, it’s gross. Yes, it’s unpleasant for me, too.
Take that show on the road, sleeping flat vs. on a slant, and the congestion will be aggravating. That’s just how it goes. And another reason why I don’t sleep in a hospital bed, or have a “slant” pillow when I travel. It doesn’t help. The only thing that helps, marginally, is sleeping sitting up in a chair, or on a slant. Way too much hassle to deal with or even consider dealing with when it comes to having a few simple days of being “normal” and ignoring my “best solutions” to settle for “good enough” solutions.
But, I know what I’m doing. I’m monitoring everything for infection or loss of functioning, and I’m doing what I can to ensure that I can remain as able as possible so that I can continue to go on adventures and not simply sit in a chair, waiting to die.
The above image was my daily start.
– Theodur 24 (breathing)
– Hydrochlorothiazide (high blood pressure, aggravated by the breathing meds)
– Vitamin E (to offset the side effects of the breathing meds on my eyes)
– Vitamin D3 (to offset the exhaustion caused by COPD and simply trying to breathe)
– Metformin (now 3 pills, as they don’t feel it’s having the benefits it should)
– Atavastin (cholesterol meds – a new joy in this game for staying healthy)
– Fenugeek (to regulate blood sugars)
– Marshmallow root (to aid in breathing, and to help the lungs fight congestion)
– Cinnamon (to regulate blood sugars)
– Tumeric (to fight inflammation, believed to be a root cause of systemic ill health)
– Milk Thistle (to fight liver damage / failure)
– Maca Root (to fight the hot flashes from menopause)
Then, as I struggled, because I was leaving a warm / dry climate and going to the woods, water, and higher altitudes:
– Allegra decongestant
– Xopenex (inhaler, which often causes more problems than it solves, longer term)
– Aspirin (aches and pains from arthritis and related medicine-caused side effects)
While I had way too many soda’s to keep my energy up, I monitored the output and also brought water with me to ensure that I protected my liver and stayed hydrated. Adjustments have to be made to simply live without hassle, and when you’re traveling more adjustments have to be made. Nothing major. But, every adjustment impacts my state of congestion or wellness on a daily basis.
So, it was wonderful to have a friend here. But, it was also a lot of work. And a heck of a lot of explanations about how I’m doing everything I can to stay healthy. And to hold my temper as I’m challenged / prompted to take even more meds, like there was some magic bullet that would fix my COPD and make me healthier for the trip.
More is not necessarily better, despite what our consumer-driven economy might make you believe.
More can be toxic, or self-defeating, as it triggers yet more complications with the base problem you’re trying to figure out how to fight to the best of your ability.
As we were driving around, I was subject to other people’s colds, perfumes, etc., any time we shared space with others. Not a problem for me, as I refuse to become a militant. I accept the fact that the real world contains germs, and that the real world doesn’t agree with me that zero perfume or added scents is anything but a marvelous idea.
When we went on a boat ride, I knew that it was 52 degrees, and that it would be a good idea to be indoors enjoying the view from behind glass walls vs. outside enjoying the breeze. So, I did it, despite my wish to enjoy the day fully.
I know what I’m supposed to be doing to remain as healthy as possible, even while simply enjoying a day runs the risk of making me sick.
So, it makes me insane to have someone hovering.
Prompting me to take my meds.
Challenging me on whether or not I’ve taken “enough”.
Please. Don’t hover. Don’t help me.
I am on my best behavior in public, fighting my aggravation every minute of every day, trying to remain invisible as a sick person. That’s my call, and the only way I know how to live. Hiding in plain sight.
But, I’m fighting bone-deep aggravation and irritability 24x7x365. I don’t need someone asking me the same question again and again so that THEY will feel better.
I don’t need prompting to get a handicapped license plate as an entitlement. Trust me, my remaining active by NOT having that plate is a negotiable issue. As is my laziness. If I have to keep moving to remain as healthy as possible, then let’s leave the handicapped plates for people who are in pain and have trouble walking. While I may be in pain and tired, my view is that a handicapped license plate means that I (specifically) shouldn’t be behind the wheel as I’m too tired to be able to do all involved.
Tired driving is similar to drunk driving, and I feel that I just shouldn’t be doing it. I’m also hoping that an automated, self-driving car will be an affordable reality in my lifetime so that I don’t have to give up my independence. Until we get to that point, my doc hasn’t taken my licenses, and I try and use common sense about when to be out and about.
I had a wonderful time going to Lake Tahoe, Yosemite and San Simeon. Yes, I was pushing myself and risking my health. But…
This constant coughing is my life.
This is as good as it gets.
Don’t “help” me, as you just don’t know how hard I’m working trying to keep up, blend in, and have a good time passing for normal.
It’s probably an oxymoron to consider winning an SSDI challenge a “success”, however, I’ll take it.
I picked up the mail last night (I love having a PO Box – it ensures I won’t lose things inside my home because I don’t pick up the mail until I’m ready to deal with it).
Anyway, I grabbed the mail to find that social security accepted my explanation for the source of the various payments from my former employer, and has been cured of its misinformation which concluded that I had returned to work.
I still have to get through the fight with the former employer’s insurance company about continuing salary benefits, but the basic SSDI insurance coverage which was threatened appears to be ok once again.
Having a chronic illness and a DNR preference highlights just how risky every choice I make can be to my overall level of health and wellness.
I’m in the middle of construction to improve my rat trap of a 41 year old mobile home. I’m also living in Northern California, hiding from the poor air quality due to the ongoing fires. Unfortunately, I can’t hide from the very risky need to breathe, so I have caught a lovely, streaming head cold as the warmth of Summer gives way to unpredictable weather, allergens and fires has hit me squarely between the eyes.
Being a DNR chooser due to my complex and chronic healthcare issues related to COPD (Chronic Obstructive Pulmonary Disease), plus my failing liver (due to the various treatments I’ve tried over the years to remain well, or, as healthy as I can be given my crappy lungs) is not an emotional choice. It’s not risky. Instead, it’s simply practical. The truth of the matter is, despite all the challenges and risks, my body keeps on fighting. It’s busy relentlessly fighting, and I just want a nap.
My birth defect damaged body is fighting to live, to take a deep, full breath. To be well. I get it, even when I find that I have zero energy for what * I * choose to do. However, my body apparently has found a way to tap into energies that I cannot see.
Nights are the worst.
Not that the days are any fun, when you’re trying not to cough (as your ribs hurt like crazy from your coughing spasms), and yet the wrong inhale triggers a coughing spasm as your lungs fight desperately to expel the bloody crud clogging them.
Somehow, though, it’s easier to believe you’ll make it through the day. A day with the sun shining and the welcome sounds of neighbors going through their lives, whistling. Banging trash bins together. Juggling grocery bags to get everything into the house in as few trips as possible. Normal sounds. Comforting noise. Life.
The anxiety of fighting off a cough in the daylight isn’t half so challenging as doing the same battle overnight. In the darkness. The only one awake.
By midnight or 2am, you’ve been up and down multiple times. Sitting up in a chair, trying to breathe without coughing, and your boney butt is killing. Your legs are swelling because you didn’t have enough energy to move around much that day, and you just want to lay down, as flat as you can, to get an hour’s rest. Rest before your lungs are filled up, again. Rest before you’re up and coughing, again, trying to stop the spasms.
I know that I’m fine. I have plans for the future which cover the next 9 months or so, and I’ll be damned if I’m going anywhere that doesn’t involve a caribbean cruise or a trip to the British Isles next Summer.
I have done my best to prepare for my life, ensuring I have a roof over my head, food in my belly, and I’ve made my deductible for the year so my medicines are covered. My money is stable for now. So, believe me, I know it could be much more difficult.
I know I have things better than other folks who are suffering constant pain.
I know I have things better than the folks that have lost family members, their homes and in some cases their jobs, as the fight against the Northern CA Fires continues.
But, this pity party is about my tiny world, and my worries as I handle my own risky business and related choices.
I keep pushing the liquids and doing what I can to simply endure the anxiety while waiting out the congestion, the feelings of imminent suffocation, and fighting to win this battle once again.
Who knew breathing, or simpky trying to breathe, was so risky?
I’ve been feeling a bit melancholy, even though everything is fine. I’ve had this Springsteen song going through the back of my head as it gets colder and Fall creeps in, so I’m doing my best to shake it off like the nonsense it is. This time of year always makes me restless that I’m running out of time and losing prescious minutes that will never come again.
So, background: I left my home in 1985 because my Mom had a rule that everyone had to be out of the house by 25.
While I lived there, I paid rent (once high school was done, and I wasn’t a full time student). I paid $30 a week – $120 to $150 a month, depending on the number of weeks in the month. I also negotiated to pay my mother more each week in rent as I understood the purpose of the exercise (to avoid homelessness and prioritize my income to be able to afford my life’s responsibilities and make a plan for my future) and I found Mom was under-charging me compared to what I’d have to pay in reality once I moved out.
Nothing that I looked at for moving out was up to Betty’s standards. After a number of frustrating attempts to find an acceptible place, I decided to break out on my own and move to California to see if my life would be better here.
$280 a month to live in a Winniebago in the back yard of a wealthy drunk, but it was mine and I loved sleeping and waking in the wilds of Portola Valley, with deer and bunnies running through the horse paddocks. Plus fog, sunshiney rainbows and pouring rain vs. snow in the Winter. It was good, and it freed my soul to become who I wanted to be.
That being said, though,I am grateful every day that I moved at a time when phones and planes existed, because it allowed me to call and visit as much as I could afford to do, despite my crazy choice to leave everything I knew and strike out on my own, far from Betty’s loving arms. (I was her “precious”, which made our loving co-dependency something that needed shaking up in order for us both to accept that I was mature and responsible for my own mistakes and good choices, far from her loving, and sometimes crippling, support). Moving evolved our relationship into something more than I ever thought it could be. I still miss our Friday night conversations. (We’d talk all the time, off and on during the week as a thought struck either of us, but Fridays were a guaranteed time to chat for an hour).
I am thankful every day over the training Betty gave her kids about priorities for home training. It’s truly helped me enjoy exploring this world and make my own choices to highlight travel adventures and experiences over amassing too much stuff, as there are no do-overs in life and you can’t take it with you.
Along the way, though, I have made some hard choices that have slowly cut me off from my family. Absence truly DOESN’T make the heart grow fonder when you’re not there for the daily grind, the boring stuff, the hard choices or the young explorations into a larger life.
While I can’t point to a clear cut answer for why my extended family isn’t a part of my life in a meaningful way anymore (beyond the known problem with my Baby Sis), it’s sad to see carefully nurtured long-distance relationships ignored and / or abandoned.
I don’t know if it’s because they are guys, and society is more lax in demanding they carry their social obligations themselves.
I don’t know if it’s because of earlier choices in who to align with among family members for moving forward when picking boundary lines… whatever it is, it’s still something that leaves my heart echoing with the silence and emptiness for missing people I feel are key members of my immediate family.
As a highlight to this issue, and to illustrate how truly petty my feelings are, I didn’t get a single birthday wish from any of my nephews on FB. Yes, I know it’s ridiculous to be bent out of shape, but is it really that hard to see the notification and NOT simply pile on with a generic “happy birthday”?
I am grateful that my niece-in-law wished me a FB happy birthday, but I am not at all happy to be ignored by her husband and the other boys. Her effort does not mean # 1 is off the hook for his own manners and social mores.
Especially significant, though, is the absence of any comment from # 4, with whom I’ve always had a chatty relationship – on or off FB. A true extrovert, nothing keeps him quiet. Until this year.
I know life changes things. I know that the early passing of my Big Brother impacted us all. For whatever reason, his boys, # 2 and # 3, get a free pass because he’s no longer here and they’ve never been good about manners or FB.
# 1, however, was partially raised by his Grandma, so I know he knows this tiny courtesy is critically important. Heck, he helped me drive to Massachsetts after Betty fell ill, packing up and shipping out or helping me get rid of my stuff, so I thought we were stronger than time and distance. It’s sad to see him slipping away, though.
# 4 is more like me, competitive, so he knows what is appropriate, even if he chooses not to do it. He had Betty’s influence, too, and has always met me half way, even though I’ve lived so far away. He’s been busy with his life, juggling a successful rock band, east coast appearances and promotional work, plus a day job AND college, so I get it that he’s busy. I’m just sad to know he’s too busy for even a passing “hello”.
# 5 is an anathema to me. Mama’s “precious” from the get go, he’s always gone his own way, so I never expected much from him as he never had to do anything more than show up to get credit. (Not sure if he suffers from extreme social anxiety, or has just found a way to shrug off any social expectations as a talent, but he’s a shy guy, and a manly man, so the threshold has always been very low in his case). I get it, so he gets a pass, too.
While I’m thrilled all my extended family boys are doing well, it’s sad to see them completely unwilling to shoulder any kind of bare bones social obligation to me, a family member. And the silence from the two most connected to me, # 1 and # 4, is particularly sad.
I know, I know… My choice was made long ago to live out here in CA, and to remain single, but it’s a chilly wakeup call that aging and distance hasn’t been kind to weakening familial connections.
Rather than dwell on what’s missing, though, I love them long distance in my heart and just wish they were closer.
We truly are lazy as a family, and I know that I’m just as guilty for making the decision to move all those years ago which brings me to where I am today. Cut off from my immediate extended family.
To misappropriate Bruce Springsteen’s 9/11 song, “You’re Missing”, this is how it feels.
* * * * * * * * * * * * *
Shirts in the closet, shoes in the hall
Mama’s in the kitchen, baby and all
Everything is everything
Everything is everything
But you’re missing
Coffee cups on the counter, jackets on the chair
Papers on the doorstep, but you’re not there
Everything is everything
Everything is everything
But you’re missing
Pictures on the nightstand, TV’s on in the den
Your house is waiting, your house is waiting
For you to walk in, for you to walk in
But you’re missing, you’re missing
You’re missing when I shut out the lights
You’re missing, when I close my eyes
You’re missing, when I see the sun rise
Children are asking if it’s alright
Will you be in our arms tonight?
Morning is morning, the evening falls I got
Too much room in my bed, too many phone calls
How’s everything, everything?
But you’re missing, you’re missing
God’s drifting in heaven, devil’s in the mailbox
I got dust on my shoes, nothing but teardrops
Songwriters: Bruce Springsteen