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That was almost as painful as the original diagnoses
Hi, @A MyCOPDTeam Member:
Pull up a chair, as I feel a soapbox moment coming on.
Your pulmonologist or respiratory specialist or even GP may have written you off, but you need to look beyond their shortfalls because they are telling you the truth as far as CURRENT medicine and technology goes, and we know there are improvements and medical breakthroughs all the time.
In 2014, when my doc pushed Anoro Ellipta across the desk to me (I was about to travel to Australia), he ticked me off for his timing. Seriously?!!? I was about to go swim in the Great Barrier Reef for 7 days and have New Years at the best hotel in Sydney, and I was out of options?!?!?!!! No way.
I stormed out of his office madder than a wet hen at the messenger, but he was only telling me the truth as he knew it.
I ignored his opinion and had a wonderful adventure - despite Australian customs confiscating my Xopenex inhaler - while also being madder than heck at what he’d said to me.
I still have the same excellent pulmonologist, and I don’t hesitate to do battle with him as new treatments such as stem cells, zephyr valves, bulletectomies, etc., come into and out of fashion as the “best” treatments for each of us, depending on our circumstances.
We’re fighting over my quality of life for the last couple of months, and we’re both being stubborn, but I’m still here and I’m still bringing a variety of options to his attention for consideration in my care choices.
Put on your exercise hat and get out there and keep doing your best to move. Read up on what the National Institutes of Health (or, country-specific research experts) recommend, and look at what Russ Winwood, the COPD Athlete is doing, and pursue anything that looks possible and viable to you.
Your doc may be out of options, but that doesn’t mean you can’t spend your spare time researching what’s been successful for others and trying to see if anything they do for diet, supplements, exercise or other medical interventions might work for you.
Hugs, as I know it’s hard to be exhausted and still have to be your own best advocate, but that is your reality.
Saturday night, 31-AUG-24
Absolutely, diabetes is a definite concern ,I've not heard of COPD affecting your circulation, but I'm not 100%,I'm only 64 but I was diagnosed with COPD 16 yrs ago ,never give up,my elderly neighbor 84,( I think ) has had cold feet & hands for the longest time, and she's fit as a fiddle. Sometimes I feel lucky to have universal health care ,but other times I think it's a detriment. I actually wouldn't mind dying, but I gotta stick around for my granddaughter, I'm all she's got. So I'm doing my best to stay healthy, I promised her [late] Mom 😓 Stay Safe &Breath easy ❤️
Thanks Joanne,it's just that some knockdowns are harder to get up from than others,in Canada we may have free Healthcare, but choosing a doctor is a bit tricky, my lung specialist was supposedly the "best" in the area. I will most definitely heed your advice as I have much to live for . I'm raising my granddaughter by myself and she's worth fighting for,,thanks for your kind ,but straightforward advice,,❤️🙏 this is Ryelyne
Thanks, @A MyCOPDTeam Member - may they all find each other in whatever next adventure awaits us all.
Hugs,
Monday, 02-SEP-24
@A MyCOPDTeam Member, that little girl’s smile is absolutely worth fighting to keep. It’s hard to advocate for yourself, but you have got to keep trying. And, if you haven’t already done so, please document a plan for her physical safety and security in case you fall by the wayside before she’s an autonomous adult. It’s hard, but you need to put her long term care plans in writing as part of documenting your own long-term care needs. Hugs, as I know this is very hard.
As for your situation, @A MyCOPDTeam Member, I am sorry to say that medical care is only for those who have the stamina to fight for it, as well as discretionary funding to pay for whatever your nationalized healthcare plan will not.
Sadly, I have to say that I want assisted death. Not that I’m suic*dal, but I am very pro-euth*nasia, and wish our Death with Dignity Laws were as all-encompassing as Canada’s.
I came home to find my cat suffering last night, and had to make the hard decision to finally put her down (we’ve been struggling with this decision for over 3 years as she had tumors all over her body, and I did not have the funds to do exploratory tests, never mind actually treat whatever we found).
Katie was in my arms as they euthan*zed her, and she passed within seconds of her first infusion at 11:30pm, just before midnight. I wish my passing to be that peaceful when the time comes.
Sunday night, 01-SEP-24
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