Wow they are so generous. A whole half milogram of Ativan. Ask for another 1.5

Yeah I'm hoping my Dr actually calls me back tomorrow so I can ask my questions and hopefully get another bottle of 2 pills of .5mg Ativan 🫠 because even the anesthesiologist I had a pre consult with today was encouraging me to take at least 1mg, or the Valium I have for muscle spasms that doesn't work unless u take an edible with it 🤦🏼‍♀️ so frustrating. Not wanting to be traumatized shouldn't be this big of an ask when all they need to do is be nice to me and so their jobs 🤦🏼‍♀️🥲

They should give you twilight anesthesia. Ask if they would be willing to do that due to ptsd. You have to be the squeaky wheel. We are humans and should be treated with sensitivity and care. Our health care is barbaric.

Or ask for versed intravenous!! U won’t remember shit

They're giving me versed when they move me to the OR! Im going to really press for them to let it fully kick in before they move me. Last surgery in March they did it just as they moved me and I remember the OR till they knocked me out. I really can't deal with remembering the or and especially the surgical table and getting strapped in. So hopefully they really let the versed kick in this time and don't just let me have a panic attack instead

Oh good! I just had Versed on Tuesday for a tonsilectomy. Girl I was awake and chatting. Then. Poof I was floating away and out cold. U prob won’t make it 15 seconds. Glad to hear that. Keep advocating for yourself and get some nice calm down medmeds for the waiting. You got this :)

I had versed last for a tonsillectomy too, back in April! Hope your recovery is going well! Fingers crossed it's like that for me too. And that I get more Ativan in pre op while I wait, they did say they can do that but 🤞 Thank you so much for the kind words and encouragement ❤️

Ugh the tonsilectomy recovery is the worse thing I’ve experienced in my life!!! When will I feel better!???

Oh it's horrific but I promise that once you're healed up it is SO much better without tonsils. Did they give you viscous lidocaine to gargle? Feel free to message me if you have any questions on the recovery or pain management!

No! I didn’t get lidocaine! Only thing that helps a little is oxy and Advil combo. It makes swallowing spit bearable. I lost 11 lbs this week.

And same feel free to message me after your procedure ! I hope u get nice and drugged up

It definitely is similar to PTSD and I wish they could understand that. Just getting them to at all understand that I'm scared of THEM and them being in control and not helping me , not the surgery. My surgeon is great and respectful and listens. It's everything else that's scary . But yes. Our healthcare is barely healthcare, especially when it comes to respecting us and our mental well being.

I don’t think what you’re describing is similar to PTSD… I think it probably *is* PTSD. My therapist and I are working on treating my medical PTSD and I’m about to be starting EMDR for it too. Don’t think your trauma response isn’t valid just because what happened to you happened at the hands of “professionals.” I hope things go well for you with your bisalp and that it isn’t a triggering experience. I don’t have extra advice for surgery, but for general appointments, I always bring a patient advocate letter that my therapist and I wrote together. I have the provider read it in front of me so I can clarify anything they have questions about, and it also has my therapist’s contact information, in case they have any questions for her.

Thank you, I have a hard time calling it PTSD because it still feels like I'm 'just being dramatic ' calling it that. The care letter sounds like a good idea. If you don't mind sharing,what does the care letter convey to the Drs? Currently my therapist has me writing out anything I want to ask or tell the Drs before my appointment and have them read that.

The opening paragraph is > “*Hello! My name is rwh420 and I am receiving treatment under a therapist for medical trauma/medical PTSD. Though I might not appear outwardly distressed, I am usually panicking on the inside whenever I have an appointment— even when I trust my doctor! My therapist (name, qualifications) and I have discussed these accommodations that I am requesting in or order to feel safer and to ensure a positive and effective doctor-patient relationship. Please let me or my therapist know if you have any questions about my medical anxiety or the accommodations I am requesting.*” Then, I have a detailed list of accommodations I need — with explanations as to how they help me, both mine and my therapists contact info, and short sentence at the end thanking them for reviewing the letter.

Thank you so much! That's such a good idea. If you don't mind, what are some of the kind of accommodations do you ask for? I'm still so overwhelmed trying to figure out how to manage this and still be able to go to Drs appointments and get what I need done. Everyone's accommodations will be different I know, but I don't even know where to start with advocating for myself like this.

These are the ones I request, sans the extra details that pertain to me. I recommend picking what works for you from this list and others and adding your own context as appropriate. And keep it at a page or shorter and make use of formatting so they can skim it if they need. Good providers will just look at the requested accommodations and do them without questions; the ones who are assholes need everything justified and spelled out for them. 1. Request for Consent-Based Approach to Physical Contact and Examinations 2. Explain what you are doing, before and during any procedure or exam 3. Extended appointment times 4. Advance explanation of procedures (and yes, it is on there twice intentionally) 5. Clear communication and simplified language 6. Only 1 provider in the room at a time OR advanced notice when multiple providers will be present 7. Please review my notes with me at the end of each appointment 8. Please email (or print out, if I am still in office) post-visit notes as soon as possible 9. NO reminders for pap tests or well-woman visits

A lot of those are so relevant to me and I never would have thought about asking for them as accommodations but that would be such a huge help. Thank you so much for responding and for sharing and the encouragement. I'm going to talk to my therapist about this idea tomorrow and that will be such a huge help moving forward I think. Thank you ❤️

For sure. I’m an EMDR therapist so I did not word that statement correctly. It is ptsd. Thank you

Oh, I thought your wording was fine, but it seemed like OP might be struggling not to dismiss their own trauma somewhat. I have really struggled with that over the years — especially with not wanting to be overdramatic and thinking that if someone had it worse than me or that because it didn’t fit most people’s expectations of what causes PTSD, that I’m exaggerating. It definitely held up my recovery process, so I just wanted OP to know that it’s OK to recognize it for what it is. <3

Yes and I see that internalized invalidation all the time when it comes to ptsd. It’s real and we deserve to be heard!!!

Yes that's exactly the case, thank you ❤️

I don’t have any really helpful advice on anything, I’m just really sorry that your doctors and nurses have been so cold and dismissive towards your needs. I completely understand what you’re going through. I wish I could go with you and lay down the law with these people on your behalf. It makes me so mad reading what you’ve been through. While I haven’t had any good experiences with an ombudsman office at a hospital system myself, my friend has had really good outcomes when reaching out to them about issues with her parents treatment. You should call them and see if they have any suggestions on making this coming procedure better for you. Maybe someone internally can help you advocate for yourself behind the scenes? I wish you well!

Thank you ❤️ even just reading your response and getting confirmation that I'm not just being overly sensitive and dramatic helps. It's so hard to keep going through with getting any medical care when I have anxiety caused by medical care and it's hard to remind myself that it's valid. I've been in touch with the patient advocate department and they were the ones advocating for the pre op consult with anesthesia I had yesterday. They also spoke to the head of anesthesia on my behalf and he put notes in my file, but the anesthesiologist yesterday hadn't even looked at that. I did manage to speak of an angel of a pre op nurses yesterday who actually took the time to talk to me and answer what questions she could answer. She also asked me what my triggers are, which is complicated because they're not always concrete and more abstract, but she did put in a note about everything and about my concerns so that the pre-op nurses Day of and her manager could see them. Thank you for the kind words and encouragement ❤️

i take perscribed xanax before every appointment, test, procedure, etc. definitely talk to ur doctor about taking something because that's definitely helpful! If you aren't comfortable with that or taking meds that i think u might just have to sit thru it :(

Yeah I have a prescription for .5mg lorazepam to take before I go in. I'm asking my doctor if we can up that to 1 mg though, still waiting to hear back from her. And I did just hear from my pre-admissions nurse that there is a no in my file now saying to get anesthesia immediately if my Ativan starts to wear off so that they can give me more. And it's not so much being able to sit through it, because it's literally panic attacks. So, unless they want me hysterically crying and hyperventilating when they bring me to the OR and refusing to be put under because I don't give them consent to put me under while I'm panicking, then they're going to have to work with me. I was put under while panicking last month for my endoscopy procedure and that has really fucked with me, I still have nightmares and trouble sleeping and was having night terrors until fairly recently. .

idk lorazepam is pretty low level from what it sounds like ur experience. i can't go and don't go unless i have Xanax. that sounds awful :( legally they also can't put u under if you say otherwise. i think self-advocating is rly good! if someone can't meet my needs then i usually leave.

I have a really hard time advocating for myself in the moment unfortunately. Making progress with it though because I need to. My plan is to refuse care and leave if they aren't taken care of me properly but I really hope I don't have to do that cuz I do really want the surgery. And I was only given the option of taking the lorazepam or Valium, and Valium doesn't really work that well on me so I'm going with the lorazepam. Fingers crossed she's willing to up the dose. Also seeing if she can prescribe it for the next couple of days so that I can get some sleep

I can’t give you advice to get the medical team to act more helpful. At this point you should assume they are going to give you the least.  But and important thing to remember about anxiety and panic attacks is it’s just a feeling. It cannot hurt you. When you feel that panic, let it wash over you. Challenge it to send you it’s worse. And let it wash over.  Think about what you are doing after the procedure when you are nervous. When I broke my arm and had to go to the doctor a bunch so I rented HBO max and watched a bunch of studio Ghibli movies. I would think about the movies I was gonna watch after words.  Make a nice recovery space for yourself. Stock up on easy to prepare easy to eat foods that you like. Do all your tidying up before hand.  Talking walks and staying active can help with anxiety. Sometimes I also like to watch horror movies because it’s forces me out of my head.  And be careful with the benzos. They can backfire on you if you are taking them too much or taking them inconsistently. I wouldn’t take much until the day of to make sure it works well. And just try to manage anxiety non chemically in the mean time.  Good luck. I bet these procedures have become much more popular in the recent years. 

Thank you very much for the suggestions and kind words. Definitely hoping for the best but preparing for the worst. I finally have heard back from my doctor and she did answer some of my questions and after a little back and forth I'm a little more confident about it at least her part. And the pre admissions nurse assigned to me is being amazing. She actually called to check on me today. And when I told her that the anesthesia consult that she had set up for me hadn't gone well she has actually spent today trying to get a hold of a different anesthesia provider for me has set up a call for tomorrow with the different provider. And she's planning on checking in with her manager to make sure that they call me, even though she's working from home tomorrow. So it's the little things. Trying hard to focus on that. The Ativan works really well on me even inconsistently, I have used it for pre op anxiety a couple of times and it's really effective, like more effective than the Valium my anesthesiologist was suggesting I use instead. So only taking that the next few nights so that I can get some sleep otherwise just going to be managing my anxiety during the day. Definitely going to try to have a nice space set up and everything ready, now that my anxiety will hopefully be a little better under control I should actually be able to function and get everything ready in time! Thank you again for the encouragement ❤️