9 Likes
@Mariethm I’m so glad you are home, and in time for Christmas. I hope the Gabepentin works and you are pain free. I dearly hope you are able to eat things you love if not now, soon. Enjoy the holidays home!
9 Likes
Really glad you are home. Hope things keep improving. Hopefully they didn’t touch your Tresiba.
8 Likes
Glad to hear you are home for Christmas! I hope you keep improving and feel pain free and better soon!
8 Likes
Congrats on getting home and hope the restrictions lessen soon! Gotta love the docs comments!
7 Likes
Sorry to read about your issues, but glad to hear you are out of the hospital and home. I’ve had to go for annual scans for pancreatic cysts for the last few years. So far they are stable (
), but I do occasionally feel some of the effects you describe (pain, loss of appetite, sleeplessness). Major league SUCK.
Hope you get your appetite back and feel at least a bit better soon!
Neil
6 Likes
Just having a bit of a mental breakdown over how I was treated at the hospital. I can joke about it, and at times vent, and other times feel proud of myself for not taking too much crap, but not right now.
Freaking diabetes dr there has the cajones to charge me for a visit, when he very clearly stated, when he walked in the room, that his sole purpose was to provide the hospital with the direction they should take. And protect the hospital, of course. I know that I can contact my PCP, get a referral, and get it knocked down to a regular visit $, but that’s not the point. And when I called to speak to patient relations, I started sobbing while leaving a message.
Its NOT ok that I had to refuse painkillers because I couldn’t trust the nurses or drs there. Its NOT ok that I was treated like a child. Its NOT ok that my calls from the room, saying that my bg was 40 was not answered. Its not ok that they took me off of dextrose and then blamed me for my lows. And its less and less ok that I feel like somehow I brought this all on myself.
Sorry, but sometimes I need to be myself…
9 Likes
I’m so sorry I missed all of this thread. I’ve been a turtle again bc life.
I don’t even think I’d call this a mental breakdown.
I think I would classify this as Rightfully Outraged.
Sharing this in solidarity…I couldn’t even get the Labor and Delivery Doctors and Nurses to use the correct insulin dosing chart during my first son’s induction. I just watched them swing me from 100 to 400 to 50 and kept telling them, “you’re doing it wrong”. They finally called my Endo at 4am who agreed with me that they were using the wrong chart. My son was born hypoglycemic. No ■■■■ assholes.
So if doctors won’t listen during the universally agreed upon “diabetes during pregnancy needs to be taken seriously”…then we’re all sledding uphill when not pregnant.
They suck. You did awesome. Bc you advocated for yourself and you SURVIVED and they did not help your cause.
You’re amazing. And a badass. So many high fives coming your way!!
10 Likes
Thank you. That made me cry. See, mental breakdown. Once again, I’ve had to relearn that its ok to not be ok with everything. I didn’t even realize how small and just yucky I’ve been feeling about the whole experience.
Now I just have to try to figure out if there’s anything that I can do in the hopes that the next person won’t be treated the same…
7 Likes
Hospitals SUCK, no two ways about it. You are 100% correct to be outraged, but you are not correct to blame yourself. It’s ‘the system’, it’s not you. You’re having a normal reaction to a sh*tty stimulus which is beyond your control. You are not losing your mind - quite to the contrary, I’d be more concerned if their manifest incompetence didn’t p!ss you off. Be your own advocate, and continue to advocate hard. You have every right. And no reason to let the bastards win.
4 Likes
@Mariethm I’m not sure your folks will do it, but I got an em invite to “rate service” both times I’ve had surgery/procedures done…and I’m not shy about both good and bad aspects as well as recommended improvements. I’ve also called directly to the administrators of the local hospital group and sent mail. I’ve asked and even drafted comments for my Endo to send the other docs/hospital. I can’t say it’s had an impact or changed any procedures, but I’m 100% sure not doing so will not result in change. You have a life to live and possibly work, so you have to judge what deserves your attention and how much…my push is to let them at least know what you’ve told us in order to help the next T1/T2/other coming along.
Best wishes for improved MH and full return to what normal should be!
6 Likes
Thank you for the suggestion, @TomH!
I have already reached out to the hospital’s Patient Relations office, although I know from experience that they probably won’t call back in any “timely manner”.
I know the steps that I should/could/may take. Right now, I’m trying to figure out which part of the whole experience is most important to tackle first. So many different issues at play here. It can be very difficult to look at it objectively, especially as I’m still very emotional about it.
Obviously, the safety (BG 40, no help) issue is the most important, but I feel like that was part of a larger issue. (Not given my meds, including my pancreatic enzymes, but expecting me to eat. At the same time, taking me off of fluids/dextrose, but putting me on the diabetic diet…) I never want to feel that helpless again.
So, do I curtail the other issues? Just a lot for me to think about.
See, now I sound like a complete wingnut. And here come the waterworks.
6 Likes
100%
Your experience sounds like being trapped to me.
If I had had that experience, I know that it would take me quite some time to sort through it all physically, mentally, emotionally.
We can only process so much stress…and we can only relive so much stress…at one time. A lot of times we have to process it in tiny bits and pieces slowly with lots and lots of breaks. You don’t have to climb that mountain all at once.
You have our full support here. I’m confident that I can speak for the Entire Kingdom of FUDdom that no one here interprets your NORMAL stress response as being a complete, or even a partial, wingnut.
You were/are physically ill. You needed help. You got more problems than solutions from the hospital. That is certainly stressful…and could be traumatic depending on how it all went down.
I can almost guarantee that what I experienced during my second C-section was a full blown panic attack on the table. It was awful. And I will totally admit it here. And I know confidently that I’m not a wingnut. So you must not be one either. Bc we’re part of a really badass cool kids club. We’re people who keep ourselves alive 24/7 and we also survive the surprisingly poorly informed medical community when there are things we need from them that we cannot do for ourselves. It’s not easy. It’s not glamorous. And it is really freaking stressful…sometimes traumatic. Like my OB/GYN saying I wasn’t in labor during my emergency same day appointment…so I waddled my ass downstairs to the Labor and Delivery Department anyway “if it makes you feel better” were her words…I was already 9cm along and chugging Sprites bc my hormones were rapidly shifting to prepregnancy levels bc this baby was coming NOW but I had 4x as much Lantus in my system that was gonna take awhile to burn up bc when I had taken that Lantus, I was still very much in full pregnancy hormone mode. And they were doubting that I was even in labor. Yeah. I was. And he got born FAST.
It’s tough. You are soooo normal to feel this way. And you can process as much of your stress as you want to here. I guarantee we understand…and at the very least we support you even if we haven’t had an identical experience. But I’ve seen some ■■■■. So I’m gonna guess that I will relate strongly to it.
Take care of you now.
Fix the system for others later.
You are the priority right now. However that looks.
8 Likes
Trust me, you can trust yourself and your judgment.
You’ve been extremely measured and objective in how you’ve related the events. Almost no one else would relay those events as factually as you did. You see how much I’ve cussed in these posts and it wasn’t even my experience? You’re reliable and not over-the-top.
You can be emotional and accurate at the same time.
Objectively, it was not a good or even competent medical experience. Just saying…from the outside. I believe you.
6 Likes
Knights jousting with lancets rather than lances!
5 Likes
That’s how hardcore we are! We fight at close range!
4 Likes
@Mariethm On behalf of anyone with similar experience, thanks for your action! You’r right to separate emotional aspects vs health/safety issues; it’s not the easiest thing to do and easily clouds the real needs. My rec: finish the waterworks or compartmentalize as best possible, write down the issues and rationales (rationales help focus on what’s important), set it aside for a period of time, review your list and determine the importance of each with health safety coming first, then your personally important point(s). If you have a truly life threatening issue needing action, and/or you want to show the hospital you mean business, send a copy of your concern to https://www.jointcommission.org, they accredit hospitals and their ratings are essential to hospital operation.
6 Likes
No, no. This is FU. We fight in range. And when out of range too.
8 Likes
5 Likes
Ok, so I’ve been debating (with myself, out loud, of course) about writing. Because I don’t want to keep whining about stuff. But I’m in a bad headspace right now, and I don’t know how to fix it. Neither of my hands/forearms have recovered from the infiltrated IVs. (Actually, the messed up IV on the right hand was extravasation, which may explain some stuff.) There’s odd painful protrusions where fuid is trapped? And one very lumpy vein that’s in a totally different place. I know that they happen all the time, and take months to fix themselves. I get it, its not serious. Or so I’m told. But today, my right hand swelled up, and burning pain shot up my arm for a while. I got the swelling mostly down with ice packs, but now that my hand has warmed back up, my fingers and wrist are intermittently locking, like my whole hand has trigger finger. I have an appt with a dr at the practice I go to, to get it checked out. I’m scared that he’s just going to tell me there’s nothing to do about it, wait a few months for it to go away. I don’t care if this is normal!
These are my hands! How the hell do I cook and take care of loved ones?
Right now I’ve lost the ability to deal with all of this. I can deal with pain, I’ve always thought that I could deal with challenges, but now, I’m not so sure. The thought of not being able to rely on my hands scares the crap out of me. And I’m so insanely MAD right now. Usually anger can fuel me, when I need it to, but I’m so tired of all of it.
I know that some will look down on me for freaking out over a relatively small thing as this, but I just don’t have it in me to NOT lose my sh!t.
And @T1Allison was right about the trauma, I’m having a tough time processing even small parts of it…
As always, I’m sorry for venting, and thank you to anyone who takes the time to understand…
8 Likes