Hey all, someone just reminded me of this post.

Its Dec 2024. I'm still on losartan twice a day. I had a dr, not my pcp tell me "if you didn't take your blood pressure, you woukdnt need to be concerned."

NO. YOU woukdnt have fo be concerned. You have no skin in this game. Just one more death. Not my fault. I have more pts to shame? "Stop taking your BP and you will be fine."

So I stopped leaving the house, and stopped walking, gave up and with no movement my SOB "went away."

Bigger issue is (who knows why right?) I fell off my stool in wheels in the kitchen as I couldn't stand up and cook etc. I hurt my hip but I have had 4 back surgeries from an on the job in nursing when I was 23. That's how I got CRPS postop when I was 24.

Its now December, I'm still in horrible hip pain and I can't tell you how many ortho guys etc wouldn't order an MRI of my hip. I'm really really good at pushing to get good care until I get blown off by another dr and I give up for a while.

My RNP who I call my PCP, shes my "dr" and did so many failed referrals. A hip dr just plain refused the referral. He saw my horrible back xrays, decided it wasn't my hio and wouldn't even see me.

Turns out I had a gluteal tear and I tore my hip labrum in two places! I said it was my hip people! I've gotten two "diagnostic" hip injections "to make sure my pain is coming from the traumatic labrum tear.

Its been so long, arthritis formed, and really at 69, they just do a hip replacement. I've been on my own for months trying to find a hip dr who understands CRPS and what needs to be done in surgery to help prevent a spread. Its hard to fjnd people who have even heard of crps. And again, no skin in the game. If I have a full body spread, I end up jn a nursing home at 70. I woyldnt bs seeing hip surgeon anymore so what does he care.

Anyway, 5 days ago I got an appt at Mayo in Jacksonville in Feb. Its 600 miles a way so hiw to get there but if I drive, ill get there. No direct flights and the flights all have 5 hour layovers. I have to go there for my 30 minute appt but ok. By Feb it will be almost a year since I fell. He rught now is scheduling surgery 3 to 5 months out. By February, it could be late summer next year before surgery.

Thus has been hard to live thru and is really a complication of long covid since I need stools or desk chairs all over the house. I'm still on oxygen (and CPAP now) at night but I've stopped checking my 02 and BP. If I don't kniw they are bad then I dknt have to be concerned. Its gibberish but my hip is so painful for 10 months, it take up all the oxygen in my body so to speak. I need a knee replacement on that same leg but I'm walking so stiff legged on crutches, it doesn't hurt so yeah. Silver lining. At least there is movement and I ha e an appt with a great Mayo dr who will hopefully nit tell me I have to have my hip replaced outpt? Ive spoken to them at Brooks rehab and with my medicare/medigap is can be there for a couple of weeks. Ill be 70.5 and all alone 600 miles from home with a hip replacement. Surely he won't send me to a hotel the night of surgery all alone right? Will he not do ut if I don't have family/friend there? Am I too much of a risk? Nah, Mayo does the hard stuff right?

Believe it or not, the 2 women at the desk at PT (twice a week for over 2 years so they know me) said they wanted to drive me to my appt! Seriously???? "Well drop yoh at Mayo and go to the beach! We can stay a couple of days and get put of the snow in Feb! We are all in!" There ARE some amaxing people in my life too. I'm not a horrible person that drs hate. Peolle that aren't drs actually like me. I'm in therapy with a psychologist who specializes in chronic illnesses and pain. She works as my team with my RNP/PCP. I've never had a team before. Its always been me on my own trying to run the show. I'm veey grateful.

So let me just add for absurd humor that I'm in Asheville. We are well known now because of Hurricane Helene. I am not homeless like many thousands now still living in tents in their once front yard! I have electricity again and got running water a few weeks ago. All this insanity, and on crutches, getting containers of water from a friends neighbors pool to be able to flush. Its been almost laughable at this point right?

I also had to have a trigger finger operated on which is fun when yoy walk on your hands and a hurricane hits a few weeks later.

So, will a Mayo Dr be afraid to help me at thus point because I dont care really if I die during surgery. Its easier than suicide and my life insurance won't be void so my sisters can each 600-800 miles away can do something with my body. Better not say that to the dr. They don't like suicidal people. I'm not in danger its just all that's left. I'm done if Mayo wont help me. Life feels very complete and ill be 70 in 6 weeks which is being hard to imagine and facing my natural mortality. How can I be suicidal-ish and scared of dying?

Its a matter of control. Good news is I've lost 35 in the middle of this mess and hope get into normal range by surgery course they say normal BMI for 5'3" goes all the way down to 104! seriously? Id be admitted for an eating disorder if I went down to almost 100! BMI weights are craziness.

Ok. This was long again and I was writing to tell the good news of no more SOB and I was posting about feeling like I don't have long covid anymore. For kicks I did my pulseox the other morning after being on oxygen all night and it was 89! Are you kidding me? The dr was right. If I don't look, I don't kniw so I don't have to care.

I have really good insurance tho who can't refuse me MRIs, surgery etc. No prequalification, no refusals. Drs love my insurance. They can do what they want to do without insurance hassles.

Has anyine been to Brooks?I hope on really good experiences. If thd Mayo surgeon refuses to ket me go to rehab, like the local dr I've seen, then surgery is off. I just cant put myself in that kind of situation. I have no husband or kids and my sisters are also 70 or late 60s with their own stuff. As a lifetime disabled person who is a senior, all my friends are too. I'm alone period.

Except for can you believe my PT office admin assistants want to drive me to mayo. I said 600 miles before but its really a 6.5 hour drive so like 300 miles?

And I gotta tell you, in Asheville and so many outlying towns and north and east TN, things are like we survived a nuclear attack. Still. 2+ months later. But kids from my church died, the whole family actually. People I know lost everything. Could be way way worse for me personally. We hsve to just stay grateful dont we? I vould easily be houseless now too. Life is bizarre isn't it?

Mayo, can you help me please?