July 5 2001 Chemical pesticide exposure

Ha!!! I found my original discharge papers from the emergency department 🏥

Vindication! 

Granted, no one knew I was exposed to CT-511 that day. (It was a year later that I found out.) 

But ha! Proof I was seen at the emergency room. And given three prescriptions. 

IT HAPPENED 

Proof I keep better records than the hospital 😬

Pack rat. 

We're cleaning our closet. I've thrown out several 30-gallon trashbags of stuff. Some which brought me great joy, but I'm throwing out because that way someone else won't have to some day when I'm dead. 

Stuff I kept for the life I thought I'd have.

Hope. Dreams. 

Tossed out! 

And copies of old bills and stuff. The junk you're supposed to keep for a decade before shredding. Well, it's going out now! (Far more than a decade.) 

Gone. Gone. Gone. 

It's hot as hell and I'm in unbearable pain.

Oh look, here's papers that remind me WHY.

IWSG writing software and Health wishes and vibes

InsecureWritersSupportGroup.com

July 3 question - What are your favorite writing processing (e.g. Word, Scrivener, yWriter, Dabble), writing apps, software, and tools? Why do you recommend them? And which one is your all time favorite that you cannot live without and use daily or at least whenever you write?

I was DIE HARD into MS Word for, basically, ever. I'm Gen X. Word is what I learned since middle school. That's what I knew.
Then, one day when I was house hunting/ dreaming, I thought, "You know what'd be seriously awesome? If I could write on my main desktop commputer, but later use a laptop and sit on the porch or something for a few hours and write there, but still have access to what I was writing. Without saving on a thumb drive or whatever." And BEHOLD, the CLOUD ☁ came into existence. My love of Dropbox is deep. Then I completed NaNoWriMo for the first time, and bought Scrivener. Then I had to LEARN how to use that. And I like it for several reasons. But I can't use it on my phone. (Don't bother telling me the ways I could. The Android app just doesn't "pet my fur." 😼🐈) 

So, honestly, what I use to write most often is Google Drive. I can easily share with my writer friends. I can access it on my phone or laptop (the Desktop is as dead as the Windows Vista it used). And I can save in multiple formats. Plus, it works with Grammarly. So that's my answer.

---

I was hospitalized on Jan 13, 2024, and diagnosed with a stroke. I was discharged after having a serious asthma attack, and the medical team realized they were killing me.
I can't change what happened.

But I am going to write some positive vibe stuff, how I WISH things had been handled.

• "I see you're squirming pretty hard, and your 9-1-1 call said you needed to urinate. So I'm going to let you use a bedpan quick, while putting in the IV line here in the ER room where you have a fan and can breathe. Breathing is important. We need to make sure you keep breathing while we assess your possible stroke. 

(Instead of forcing me to continue to hold it. Taking me to the CT room, where it was too difficult to breathe, and increased suffering for 15 minutes while trying to get an IV.  Noting I was struggling to breathe, doing nothing about it. And injecting a dye so it felt like I had urinated, making the urge so much more painful, then yelling at me for not being still enough. Did they WANT me to piss in the CT machine? Because it was crazy close to happening.)

• "Your hand is turning purple, and you are screaming in agony. It seems the automatic bp cuff doesn't work on you, and it, in fact, triggers your "fight/ flight response," which increases your blood pressure. We need to lower your pain to reduce your blood pressure, so we're going to try doing it by hand with a cuff that actually fits your arm."
• "You've been admitted. Here is a mini bottle of hand sanitizer so you can keep your hands clean, especially before you eat. We won't let you wash your hands because you can't get up."
• "Hi, I'm one of the nurses. I need to <medical reason>, so I'm going to grab your gown and stare down in it at your chest. 

(Because in literally any other situation, a stranger grabbing your clothing and staring at your chest... that's assault. Seriously, this is unethical behavior in any other situation, no matter how you cut it. I'm not sure I wasn't assaulted, to be honest. But for my mental health, I tell myself there was a reason. I didn't have any leads on, so it couldn't be one was loose. Umm... maybe he was checking that my ribs were still inside my skin. Uhh... I don't know. I reported it, but I don't believe anyone cares.

My mind, in that moment, went to defending myself. I would have slapped him. But my right arm wasn't properly functioning yet. And, he was a BIG guy, his body was on my left arm, rendering it useless. I didn't think of screaming because it takes a lot of air to scream, and I was having enough trouble breathing.)

• "We see you are taking Advair 250/50. That's a pretty serious respiratory prescription. Is there anything we can do to help keep you breathing?

(As opposed to, "oh, we didn't think your asthma was serious." Said after my attack. 

• "Let me get a tape measure. It seems you won't fit into this MRI machine in the position we need. And it'd be too hot. So we'll leave you in your room.

(Instead of trying to cram me in, injuring my elbow, ignoring that injury, and then exclaiming, "oh damn, she stuck." And then sending me back to my room.)

• "I've brought you back to your room. Let me settle you on the bed and make sure you have your call bell and such."

(As opposed to dropping me and rushing out. Why assign a nurse to escort me if she didn't have the time to keep me alive? The asthma attack was 💯 totally avoidable. Half a second to push a table over. I almost died because someone didn't shove a table my way as she rushed out. Take a second to secure the patient you are with. That's a very basic care procedure. Don't put your "fall-risk" patients in dangerous situations. "ABC" - airway, breathing, cardiac -- make sure your patient can breathe and has a heartbeat before leaving the room.)

• "We're discharging you early because you stopped breathing, and we don't have a way to keep you alive. But, since you just took your first five steps today, we recognize you will need some help getting back into your home. So we've called <paramedics, firefighters, physical therapists, wrestlers doing community service, the local bodybuilders association, who the fuck ever> to help get you home safely since you can't walk on stairs yet."
• "We've contacted tech support and they did some minor programming. Now we can put a copy of your MSDS sheet on your chart, along with a note. So no medical person will ever neglect your respiratory needs again."

(Seriously, since we don't use paper, and thus can't paperclip a thing, create an alternative! We have the technology. Even just a note on the chart, people can Google CT-511 themselves. Or just note that I need air 60℉/ 15.5℃ to properly breathe. An anesthesiologist might need to know details, but at least other doctors could avoid needing to use, "😰 CODE BLUE response team!" Just stop trying to make me unalive.)

Primary reasons I (uselessly) reached out to half a dozen lawyers:

1. I should not have had to experience another asthma attack while hospitalized.
2. My elbow should not have been injured, and that ignored, while hospitalized.
3. My right big toe should not have been injured and ignored while hospitalized.
4. I should not have been prescribed an overdose of aspirin.
5. I was discharged so fast that another patient's information was attached to my discharge summary. HIPPA violation?
6. Arrangements should have been made to get me home safely, as I could not yet walk well enough on my own (especially on steps).
7. I wonder if manual blood pressure readings could have been taken in the ER, instead of letting my left arm turn purple. Especially as my right arm wasn't working at the time. Could one hand/ limb have been protected? 
8. Is it possible, in the future, for my respiratory condition to be taken seriously at the onset?

I'm sharing this on my blog because this is my space. I wanted to write about what happened and how I wish I was cared for instead. Mostly, I wish I would have been safe at the hospital, that my breathing would have mattered. I feel scared and helpless. I know no one can do anything about it. But I wish there was a way to prevent anyone else from facing this situation. And I wish I could protect my future self. Not that this blog post accomplishes either of those, but I genuinely don't know what to do other than leave this record here. 

Thanks for reading.

Asthma/ Respiratory Condition
Requires air 60℉ or below

⚕ Diabetic, Stroke. Jamie Dorner
Latex Allergy

Totally useless medical ID bracelet on my wrist. I had on my old one in Dec, but pretty much the same except for the stroke update.

Truth, Lies, and Illness part 2

As far as being a burden, yes, yes I am. I've cut most of the people out of my life who treated me like one. And I took a LOT of activities and independence off my calendars so I don't go out and become a burden to unsuspecting strangers. I put the responsibility of my breathing on myself as much as I possibly can.

I'm reading something now that talks about living more fearlessly. Or living in such a way that fear is there, but suggests to just do the opposite of whatever it wants.

And I feel the need to defend myself. Which is probably another indication that I should be in mental therapy counseling or whatever.

"Unsuspecting Strangers"

I have gone to the hospital to have lung tests done. The last one resulted in the tech calling the code team. Part of the reason is that she had no idea what else to do as my respiratory attack WOULD NOT STOP. Her job, the actual thing she does for a living (I'm assuming here, because I'd like to think the hospital didn't ask a receptionist to "cover" the respiratory lab or something), for which she must have had some kind of training, includes dealing with people who have breathing issues. This test isn't done on healthy people. They only whip this phone-booth sized coffin with a tube that cuts off your air supply for people who are having real problems. Which means she wasn't an UNSUSPECTING stranger. She was freaking trained to deal with this situation, and I caused her to freak the fuck out.

This is not the only instance where I've had medical people, ones with letters after their names, sitting there wide-eyed without a clue as to how to keep Death from taking me.

So when I say that I would be overwhelmed with guilt if I put a regular person, some mall-dweller or whatever, in the position to decide between trying to help me or fleeing the scene, this is what I mean. The odds of a random person knowing what to do aren't good. People with decades of training and experience stand there going, "uhh... what?" Yeah, I have instructions on my medical ID bracelet and phone saying to get me to cool air. What if they don't look? What if that time it isn't enough?

What if I die and someone ends up with guilt because they couldn't save a stranger, and they never even find out that the odds were stacked heavily against them? I'm just some asshole who got it in her head to go do a thing one day, and then couldn't breathe, and now they fucked up CPR or whatever and had to watch me die. And THAT goes through my head EVERY time I plan to walk out my door. EVERY time.

It's a little easier with friends and certain family members. They at least know to dump ice or other frozen products on my airway and chest and then shove an inhaler in my mouth once the cold had a chance to work. And they know how bad it is, so they know if that doesn't work and I end up dying, it really is despite their best efforts and there really wasn't something more they could do. I'm not forcing them into a guilt situation as much. Yeah, they'd still be sad and all, but these are rational people who would come to the conclusion there really wasn't something else to do.

Yes, I'm more afraid of saddling a stranger with guilt than I am of staying home in my air conditioning with some control over things.

And that probably isn't mentally healthy. Or physically. But it IS what I've got.

Truth, Lies, and Illness

Posted by Wholesome Memes on Saturday, December 1, 2018

See... I want to believe this. But the chronic illness that is kinda leading to mental illness (and by kinda I mean a suped-up truck with hauling capabilities off the charts) has a different take.

I wasn't stupid. But the oxygen deprivation has taken a toll on my mind. I notice it all the time. I'm slipping.

I wasn't ugly. But the steroids and being told to stay still as much as possible caused my weight to double-and-then-some, which isn't helping my appearance.

Worthless depends on how that word is written, because if you stick a space in there and do some very basic math... Umm... If "worth" can be measured in terms of money, not only am I worth considerably less than I once was, but I'm now an economic drain. There are plenty of politicians leading my country who have implied as such and clearly would prefer that people like me drop dead or deport ourselves as we aren't adding financial value.

As for being weak... Physically, I use to lift 80 pounds overhead at least three times a week. Now I struggle lifting 5 pounds. Mentally, I use to multi-task with the best of 'em and deal with drama and stress without having a breakdown. Now, no. Because I live to close to the breaking point, getting tipped over it takes almost nothing. I had a meltdown over a lollipop once which is so dumb I can't even stand that it happened. And that pops me around to emotionally, where I was once stable and labeled "not like other girls." But now things hit me more often and I have new feelings that I can't even identify, much less deal with, but it's not like I'm crapping out money for a therapist. Which would be nice, but I can't even afford better lung docs so ... oh look, there's that worth/ value thing again.

As far as being a burden, yes, yes I am. I've cut most of the people out of my life who treated me like one. And I took a LOT of activities and independence off my calendars so I don't go out and become a burden to unsuspecting strangers. I put the responsibility of my breathing on myself as much as I possibly can. But still. There are family members I haven't seen in years because yes, it would be a HUGE burden on them to make their home cool enough for me to breathe or for us to meet up somewhere that's cold. I'm not worth wearing extra layers of clothing for, to them. I don't push the point. That worth thing, if it isn't about money... if it's about value in the family, well then I've fallen clean off that wagon. I'm down to less than a dozen family members who care.



I'm not sharing this on Facebook because I don't want pity or to be argued with about my feelings, my reality. I saw the post on my friend Becky Suglia's timeline (Dec 3, 12:14pm EST -- Friends only: her link) and I wrote this reply. But then I didn't want to comment with something THIS LONG on her Facebook wall. So I moved it all here, to my blog, where it will barely be seen.

My reply isn't the POINT of the post. The meme isn't for people with chronic illness. Or whatever other argument someone who can feel cheered up by this will make. I'm not there. I lack evidence to contradict the facts of my reality. Yeah, I have some good days. And there is a small group of people who are glad I'm around and don't think about me this way.

But my body is a prison. My freedom is restricted by my need for cold air. And yeah, I could try carrying a bag of ice everywhere, or this fan or that fan, etc. But see that paragraph about being weak? Yeah. And whipping those out reminds me that I've put myself in a dangerous situation. That I shouldn't be doing what I'm doing. And I feel like I'm behaving in such a way as to indicate I am ungrateful to be alive.

And that's when guilt and depression really kick in. Self-blame. And then I, the person who was always quite fond of herself, land up in a pit of self-loathing. Then grief and regret. Until I can't stand it anymore.

Those are bad days. I'm ashamed of myself when they happen. And then I see memes like this and they make me feel even worse about myself. EVEN THOUGH I KNOW THAT ISN'T THE POINT! It's supposed to make people feel better. And I truly hope it does make someone else feel better.

But that someone isn't me. If it's you, here's another copy:

Goals for Health

There are differences between goals and wishes. Goals should be something the setter can influence, cause, or do on ones own. Wishes are something that one hopes will be granted, but has little to no chance of causing it to happen.

When setting goals for my health, this distinction is especially important.

Health-

Physical

Short term:

• Survive the summer by avoiding the heat as much as possible
• Get in the pulmonary rehab when the heat ends
• Stick to low sodium diet
• Get new glasses
• Get new birth control
• Make more effort to drink 64 oz of water a day

Long term:

• Create a survival plan for global warming
• Stick to health courses of action to keep me alive to 70 or 75

Mental

Short term:

• Journal (love to Jackman T)
• Get a living will written
• Update my emergency contact information
• Don't let depression win this summer
• Remind myself that winter will come, so don't let depression win
• Keep telling myself that it will pass, and it will get better, because hot days will end
• Allow myself to not cry for more than 15 minutes a day this summer when mourning my former self
• Keep filling out my year color chart from Katie
• Hang with writer friends weekly (as weather/ etc permits) 

Long term:

• Have enough passive income to pay for regular psych therapy
• Create a "Retirement"/ Older Living plan
• Plan for after-death
• Keep advocating for my elected representatives to give me better healthcare
• Keep doing Luminosity game to retain mental acuteness  

Wishes

• Get my handicapped placard (applied with application from my doctor)
• Not needing any new medications
• Be able to afford any new medications I end up needing
• Lungs all healed/ fixed
• Get back to weighing 130 lbs
• Be able to lift 50 lbs overhead again
• Be able to bench/lift 250 lbs with my legs again
• Be able to walk for six hours outside in a summer day again
• Not be terrified of doing most things because it could be hard to breathe

This is one post in a series.

Health non-care in 'Merica

I just saw this on Pinterest. My immediate comment was to ask who DOESN'T say these things,  other than the ridiculously rich. Being twenty has nothing to do with it. We thirty-somethings and the forty-somethings, and my fifty and sixty-something parents also say it.

I can see how other countries might be surprised and confused, but who the hell in America  ('Merica) doesn't know that this is the state of things? Do we have a citizen that's been in a coma since the Carter administration or something?

Seriously, this is the most "no shit" pin I've seen. Toss in a note about the sky being blue and the moon not actually being made of cheese and maybe you've got something.

What the heck was the point here?!?

#TackleTBR Wrap up post and Life Health Update

Thanks to the time set aside for this challenge,  I've read 2 books by one of my top five favorite authors of all time,  and 2 books that were birthday gifts,  and by the end of today will have finished a "here, read this" book from my boss/friend/cousin-in-law.

2+ 2+ 1= 5 books

There was one other I had hoped to get through, but my health took me down during the challenge. (Thanks to the ♡'s who got me emergency medical care at 10pm and "force fed" me things I could eat when the meds and sickness made food icky.)

I know I didn't do Goodreads updates. Whoops. You'd think having the app on my phone would make it a given, but nooooo... lol.  My phone is being hindrance heavy. I'm 5 models behind!  Blargh.

But I manged to stay awake for 16 hours today! First time in 9 days for that. AND I left the house for the first time in 9 days. The sun! The sky! Air! Birds! Yup, all still out there. And and and-- I had real food today! Not just bland food.
Lobster
Baked potato (okay, that could be bland food diet, but it was yummy)
Chicken Salad hoagie
Rice pudding (okay, again, technically could fit the bland food diet)
Applesauce (yeah yeah, I know)

Actually, that's all I ate. BUT, none of it shot back out of my mouth (yet, knock on wood) so VICTORY!

14 years of #fail

Blame, compliain, ungrateful

I'm having a difficult time deciding how I feel about this meme, as it applies to a large chunk of my life.

Let me try something:

1. It is MY fault that I went to work. Having a job is just ASKING for exposure to a chemical that was handled improperly and not reported. I should have ____ instead of working. (No idea what goes on the blank.)

2. Yay! I sure do enjoy being unable to do my job anymore. It's super awesome to never be medically released,  but also not be able to collect disability because the doctors (darn, about to blame...)
Because I don't have a medical degree to prove what's wrong. And rah, rah, sis boom bah, I had the pleasure of giving all my money to pay for extra pain and suffering which,  fortunately,  never undid the damage from those chemicals. Hippy hippy hooray, I went bankrupt! And a big three cheers for every time I can't go somewhere because the heat means serious trauma or certain death.

3. I'm grateful they brought me back from the end of living. I'm super happy to know that I'm probably not going to grow old. And, whew, dodged a real bullet finding out that my broken body probably wouldn't survive carrying a child,  so that dream is dead.

I tried. It sounds sarcastic.
The truth is,  I'm angry. I can't accept this thing I can't change. I've been failing at life since July 5, 2002 - nearly 14 years - because I keep wishing for my body back. Wanting to be able to walk up the steps. Needing to be able to get from the car to the store. Hating every family gathering that I can't attend because I can't breathe. Or going and sitting inside alone (or with John) while everyone else is outside. And pretending that doesn't hurt. Watching everyone have fun through a window.  Like I'm a ghost.

Like I'm a ghost already.

I hate this meme. I hate not being able to do simple things. I hate that I'm alone 39 hours a week because it's safest this way. I hate not working. I hate not having coworkers,  not having a boss,  not having a purpose. I hate not getting a paycheck. I hate getting stuck in traffic in the summer and,  even though my car is new,  I can't get it to drop the temperature 40° F, and then feel like I might pass out. I'm terrified of how that would turn out. And moments like that actually ARE my fault,  because I know better than to take those risks. But it's hard to be alive and not live.
(*Live sounds like liver, not hive.)

It's also hard to carry around an extra 140 pounds.  The cost of taking steroids and being told to stay as still as possible as often as possible. Really? That's horrible advice! Yet more than one doctor suggested that or something similar. "It hurts because you aren't supposed to do that. You've got limitations. Be patient and kind with your body." THIS DOES NOT FEEL KIND.

I can scream-type all day,  it won't change a thing.

The meme is probably right. Look at my life. Fail isn't exactly inaccurate.

But damn, that's a harsh thing to point out. Could the writer swap lungs with me for a few years? I'm curious if I could go back to being a success once I'm not tied down with this. And,  OBVIOUSLY,  a little thing like constant pain and not breathing isn't going to hold him/her back. Come on,  it's just a little lung transplant...

Dear Diary or Whatever

I sought the help of another doctor. She couldn't help. She tried. Mostly she ended up trying to help me find someone else who might help. One of them said that,  on top of everything else,  I'm probably depressed. A stranger who has never met me has made this diagnosis based just on my medical history. Not on my actual files or treatments,  but just based on what I told the other doctor.

I fight tooth and nail not to be depressed. I'd rather be angry. And yeah,  I know that's fighting chemistry,  but I don't care. It's fight or die. So I stick with angry. I'll complain adamantly about a broken smoke detector. Am I Ms. Fire Safety?  No. But it's a problem,  and one that I might be able to fix. I can't fix my own body. I can't seem to find a doctor or a drug to improve my quality of life. But I can raise hell over a smoke detector.

Dear Diary or Whatever... I did something dumb today. Just after six pm,  I took my meds. My alarm had gone off,  so as soon as I could get to them,  I did them. I didn't think it through. I was like a robot. I did it with less thought than flicking off a light switch.
I didn't eat first.
And then I had to take my mom to run errands. And I quickly paid for not having food in my stomach. Oh God,  I paid. I wanted to run into traffic. I wanted to bury myself in a snow bank. But,  most of all,  I wanted to go back to sleep. I wasn't tired. But it hurt. It hurt so much. It took me an hour to eat 6 pieces of sushi, once I finally was able to sit and eat,  which was 3 hours later. I forced myself to stay up for another hour. Okay,  45 minutes. I couldn't take it anymore. I passed out.

I didn't think. I failed to plan. I know the consequences and have no one to blame but myself. And I had to write this somewhere. I don't know why.

I'm glad I don't hang out with any mind readers. They'd hear me screaming in my head. They'd know the truth.

I'm not depressed. I'm angry and I'm in pain. And I've lost nearly all hope that it'll be okay,  or better,  or not worse.