Boo’s nostrils are underwater dealing with major health developments that leave me too exhausted to type most of the time. I keep thinking “any day now I’ll start feeling better and I can rejoin the world, type a long MMP missive to explain the whole complicated mess so they only have to hear about it once”. Except “feeling better” even though I’m doing the meds and the 24/7 oxygen and the pulmonary rehab 3 %&#$!ing times a week is not happening, not one bit. The treatment is not reaping rewards and my spirit/hope/optimism is shriveling up.
I too had trouble convincing the doctor that something was wrong, it wasn’t just just “you’re old, you’re fat, what do you expect?”. This 72 year old woman who is indeed old and fat, with a history of depression, did also REALLY HAVE SOMETHING (ELSE) WRONG. Like a hiatal hernia, asthma and a PARALYZED DIAPHRAGM. Pretty hard to pull in enough air if only your left (smaller) lung works. Constant soul-sucking exhaustion is an understatement. Some things you can’t push through by sheer will.
By the way, none of those doctors ever say “guess you were right, there is something wrong, we should have listened and taken you seriously.” Nope, not a one. Nor do I think they will take me seriously in the future.
Managing the treatments, juggling the medical oxygen equipment supply chain, keeping appts uses every scintilla of bandwidth I have. Energy and my former momentum have not returned. Rehab is all take and no return. If this former shadow of myself is fully out of reach, why bother?
Wearing oxygen 24/7 is like having to drag around a ball and chain everywhere. Trying to be gone from my house for more than a few hours to be a functioning human becomes a huge undertaking. Prying a portable oxygen concentrator out of my medical equipment provider took all my bandwidth for over a month. The message was loud and clear “just stay home, plugged into the wall, for the rest of your life. Give your former life up and don’t bother us”. Even after I got my hands on a portable oxygen concentrator (portable being a relative term-they’re still dense, heavy and awkward) then the external battery for it doesn’t work and I get 4 whole hours of breathing outside my home before I have to plug back into an outlet. It’s well nigh impossible to grandma a one year old plugged into the wall with a less than 5 foot cord. The 5yo granddaughter understands more, but it’s still a hassle and PITA. All my bandwidth today will get sucked up by calling the equipment company and having to pry a functioning battery out of them. I can do one adulting thing thing a day and then I’m done, no matter how much I intend otherwise. No more going out to pick up groceries and stopping for three other errands in one fell swoop of a trip like the tireless me used to do without even thinking it about it. One and done is gonna be my epitaph. I hate it.
Covid supply chain snarls and staffing aren’t helping. Pharmacies bare ass don’t have enough trained, competent bodies so can no longer drop off a prescription, wait 20”-30” and pick it up. You have to go back the next day to pick it up because it has to be filled at a prescription center one state over and then trucked back in the next day. So it takes two one and done tasks, uses up two days of bandwidth to do one simple thing. And there’s a myriad of “one things” that need doing every day. 90% of which go by the wayside and are stacking up on me.
Just for extra fun last Thursday my 33yo hale and hearty roommate needed picked up and driven to the ER because a routine Dr office ekg was showing a fib. 8 very scary hours in the Er and then two days in the cardiac unit followed. Yep, a fib and heart failure. No insurance. What a mess. She’s home now but standing by her bedside those 3 days sucked the bandwidth out me for days to come. At least once she got into her room I could plug my cannula into the hospital’s oxygen supply and wasn’t dependent on those 4 measly hours of battery. Yep, your friend and Mumper stole oxygen from Bryan hospital. Hours and hours of it.
My sleep studies showed I definitely have sleep apnea and need a CPAP. No wonder I wake up and feel worse than when I went to bed. Another thing I’ve been telling drs for over a year. I’m getting next to no REM sleep. Wearing oxygen does no good if you’re not breathing it in. Then it takes a month after the sleep study for the prescription from the sleep doctor to get to the respiratory equipment company. Then they tell me it’ll be at least a month before the supply chain coughs up a CPAP unit. Meanwhile, for me, attempting to sleep is a net loss. I’ve forgotten what a good night’s sleep feels like. Mostly I try to keep hoping that after the initial adjustment period CPAP will finally make a difference in how I feel. If and when that mythical CPAP shows and if and when all the components work.
If it doesn’t, I got nothing.
Meanwhile, I read all the MMP everyday and care deeply about all of you. I’m just too wrung out to do much about it. Carry on.
Fondly,
Boo
We don’t care. They’re so good.
