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It’s Been a Long Time


I will be doing an update this week. It’s been hard to write here, because… my emotions have all been a jumble. I think I’ve decided to consult an attorney about some of the things that happened to me medically at one of the facilities I went to, so I can’t talk about a lot of that publicly until I decide, but once I do, I will be writing about it all along the way, because people need to know what they are getting into if they choose to hire an attorney to protect and defend their rights and interests.

In the meantime, here’s a post I put up on Facebook, unedited, about something that happened to me today when I went to have my pulmonary function tests. I’m supposed to have them done once per year to measure how much things are changing, but it’s actually been four years since I’ve had them done (just another thing this other place did wrong). But the new place is doing it right, and I had them done today. I’ll talk more about PFTs in another blog post (PFT – pulmonary function tests).

For now, here’s my post from FB:

So after taking a header off the end of the wheelchair ramp in my 320 pound electric wheelchair (which thankfully Lynn managed to keep from coming down on top of me when the chair and i went off the ramp), I knew it was going to hurt…. later. Right at that moment, I tucked (which must have been quite a sight, indeed), threw the oxygen canister one way, my cellphone the other way, and I went a third way and rolled. Thank goodness I did, or I’d have landed on my hands and knees, and I know better than to do that–the butt is padded (and how!), land on it! I rolled from my hip to my butt, and managed to miss any major damage (or so I thought).

I ended up lying flat on my back in the middle of the valet parking driveway. There are three lanes. I was in the middle one, just, you know, laying around, staring up at the concrete pillars above me.

My friends, there was a brief moment when I thought: I can just close my eyes, lie here and not get up. Just…. never get up.

But before I knew it, four valet attendants, one hospital attendant and people from their cars waiting to be parked were all getting out and coming toward me. The only thing worse than falling a foot or so off a ramp is having a bunch of strangers all running toward you to put their hands on you–and you’re an anxious introvert! Nooooo! I can do it, thanks, nope, don’t touch me, thank you, all right, I’m fine, I’m good, I’m getting up, see, nothings broken ow, no, it’s ow, i’m ok-ow-ay!

It took three tries for me to get back into the chair from the ground, as I discovered that 1) I probably broke my big toe but at the least I dislocated it 2) the part of my foot and toe that I broke two months ago, though i thought was fully healed and was no longer hurting… when you flex the toes and put all your weight on them to lift your body off the ground, you realize those breaks aren’t quite fully healed and still hurt and 3) it’s really hard to get up off the ground using your hands are leverage when several people around you all are grabbing your arms and trying to ‘help’ you. I know they meant well, but they didn’t know HOW to help and I almost fell over again! LOL

But I am actually quite grateful and pleased to see how kind everyone was. They were apologizing to me over and over, like it was somehow their fault I took a header off of MY wheelchair ramp with my chair. The ramp malfunctioned–that is in no way their fault.

But it got me to thinking about how we frequently apologize for things that we didn’t even have a hand in. I think what we’re trying to say is, I feel for you. I’m sympathetic to what you’re going through. I’m grateful it didn’t happen to me, even. We don’t REALLY mean we’re sorry when we say it over something like this. But to a near stranger, saying anything else feels too intimate and personal.

But we do it to our friends and family too. I’m sorry. I hate those words.

it doesn’t mean I don’t want someone to apologize when an apology is necessary, myself included, but I’m taking the words: I’m Sorry–out of my vocabulary.

From now on, it will be something like, “I’m grateful you trust me enough to share your pain with me.” instead of “I’m sorry you’re hurting.” Or maybe, “Thank you for cleaning up the mess I made.” instead of “I’m sorry you had to clean that up for me.”

Because I’m sick and not able to do everything I want to do, a lot of times I feel guilty when people have to do things for me. I’m changing the dynamic of that and moving to a place of gratitude about it instead. No more being ‘sorry’ for what I can’t do. Instead, I’m going to be grateful for what others do for me. i always HAVE been grateful, but the guilt gets in the way of gratitude. Maybe if i change the language, the feelings inside will change too. I’m a writer. Language is everything to me. It’s powerful.

This was what Lynn and I were discussing in the meditation room at the hospital today. I spent two hours in the meditation room, thinking, crying, talking. I needed the sensory deprivation that the quiet, cool room gave me. Away from my usual reality. I am so grateful to Methodist hospital for providing that to us. It’s a lovely small room in the outpatient clinic. They have a chapel and a healing garden that are lovely too–but this little room was what I needed today.

Of course, this was also after I learned that my lungs are working at 51% capacity of expected. It was 67% four years ago, so this is not good news. Also, four years ago, I showed only restrictive lung disease with perfusion defects. Now I’m showing both restrictive and obstructive lung disease will both filling and perfusion defects. Which all pretty well sucks.

But it explains a lot too. The question is, why? Why are things getting worse without any acute ‘events’? Hopefully we’ll find out when I see the pulmonologist. But that has been postponed because they wouldn’t let me do the 6 minute walk test after the fall. I’ll have to reschedule it for next week and then see the doc the week after.

In the meantime, i start with the lymphadema clinic on Thursday for my initial assessment on getting the volume overload and fluid off my body. I’m ready to get rid of all this excess weight and fluid now!

So pardon my ultra long post. I was going to put it on my blog (probably still will) but no one reads my blogs any more (pout) so I have shied away from them. Maybe because they are too long. Hell, maybe no one will read this, but it sort of feels good to write it out. So thanks for letting me have a venue to do that, and thank you so much for listening/reading and caring.

You guys posting and commenting as i go through these things… ya’ll are the reason I get through them. Ya’ll are the reason I keep going and don’t just leave appointments sometimes. ya’ll lift me up when I’m lying on the ground staring at pillars thinking I’m just going to lay there and never get up again. You guys get me up again.

And I love you for it.


love and stuff,



The Value of a Second (Or Third, Fourth, Fifth) Opinion


So after meeting with the cardiologist at Baylor, I then met with the pulmonologist I’d been waiting for over a year to meet with. And she spent less than five minutes with me and put me into the hospital straight from clinic: Do not pass go, do not go home and pack a bag, go straight across the skybridge to the hospital across the street and check in.

It was a whirlwind. Crazy. I was scared, because these things don’t happen and I don’t know the hospitals there or the doctors or anythingUntitled (2). So they put me in the hospital at Methodist Houston. I had to wait forever for a room and in the meantime, I ran out of oxygen in my tank. They brought me a tank to supplement until I got a a room where I could hook up to the room oxygen. Silly me, I dropped the tank on my foot in the room, and I broke my foot. Seriously, fractured a bone in my foot while at the hospital. They even took me down to x-ray and everything. It was hilarious. Well, I guess you had to be there to laugh at it. The bruising was amazing! See?

But that all said, I have a lot to get off my chest, so stick with me, ’cause this is going to get long, if I know me at all (and I do, so it’s going to get long):


New Hospital, New Clinic, New Outlook


Hello world!

Braless, Barefoot, and Bare


chair-1604416Over a decade and many more years ago, I was in an on again off again tumultuous relationship with a man, that I would now hardly call a relationship. At the time, he and I were driving in a truck from Dallas back to my home at the time, which was about a 6 hour drive. I was wearing sandals, so I kicked them off, curled my feet up under me, and then slipped my bra off while still wearing my shirt. You ladies know how to do that, right? Right. So anyway, I was just kicking in for being comfortable for the long trip. I slipped the bra into the side pocket of the truck, and I started to read a book I’d brought with me.

When we got to Weatherford, I told him I was hungry and asked if we could stop to get something to eat. He needed to fill up with gas, so we did that first, and while he was filling up, I searched for a place nearby to eat. This was before the days of smartphones and GPS being so popular, so I had to go into the station and ask about places to eat. They suggested a great place just down the street, so when he got back into the truck, I told him about it. We pulled up to the place, and I got ready to get out, slipped my shoes on, and reached for the door handle.

He stopped me and said, “I’m no going in there with you without your bra.” (more…)

The System Finally Broke Me


I give up. I quit. I’m done. Why try? Why even fight the system? In the end, we always lose anyway, right? So why go through the aggravation to even bother? The difference is you either die broke and sick now or you die broke and sick a couple of years later… sigh.

I probably don’t really mean this. I’m probably just depressed and angry. I probably will keep fighting the system.

But today, right now, right in this moment, I’m done.

I’m so done.

I have only three days worth of medication left of the Lovenox injections. And I only have that much left because, depressed and feeling lousy, I went to be last night and forgot to take my injection at all yesterday. Otherwise, I’d only have two days left. (more…)

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