Miscellaneous ramblings of NarcKiddo

[zen_racer]

NK, I'm sorry you're having a rough time.  It sounds like that AI research was a great thing to do.  It's always good to advocate for yourself when it comes to medical stuff.  I had to do that a lot when my gallbladder failed by going hyperkinetic. 

I appreciate the full honesty when describing your experiences with the inner children.  I especially resonate with having trouble being nurturing towards a younger me.  I think we all just did the best that we could with what we had at the time.

I hope Teenage NK starts to see you as caring and patient as I do soon.

[HannahOne]

I find teenagers to be a challenge too, NK, both inner teens, and outer ones, LOL! Building a relationship with yourself is important, and takes time. I try to remember I don't have to like all parts of me. Or my actual teenagers I live with My inner teenager is like an abused dog. I Can't walk up and pat her on the head. I have to sit quietly in the same space, not  making eye contact, and just wait for her to come to me, if she wants to. Anytime I try to be direct, it goes wrong. Kind of like talking to teens while driving in cars: less confrontational, more parallel. And remembering as you said that the inner teen was just a kid. It's easy to think of teens as little adults but their brains are not fully developed. They're just kids trying to make it.

[sanmagic7]

NK, that lung stuff sounds intense.  well done for learning what's going on with all of it and for knowing what' best for you to do to help your lungs work correctly again.  just a thought:  could you write out what you need to have done, keep it with you in case, as you mentioned, you get a flare-up that needs to be tended to by a doc, but you can't speak? 

i'm just getting into the little me's stuff, but it sounds like you're navigating the waters with your inner children and i agree that teens of any kind can be rough to deal with.  as someone mentioned, your kindness and caring will show thru and eventually all of you will do well together.  i have no doubt.  love and hugs

[NarcKiddo]

Thank you everyone for your kind, understanding and helpful comments, and for being here. San, that's a good idea. I have an online journal I can access on my phone and you can pin entries to the top so that would be a good way of keeping the vital information easily to hand. I've already got the AI information in there so pinning it is an easy job. I actually LOVE this particular online journal. It's called Day One and I'd recommend it to anyone. I pay for it so I can have different journals for different topics but the basic free one journal model is fine, too. It's what I started with.

My inner teenager is like an abused dog. I Can't walk up and pat her on the head. I have to sit quietly in the same space, not  making eye contact, and just wait for her to come to me, if she wants to. Anytime I try to be direct, it goes wrong

Thank you so much for this analogy, HannahOne. It is massively helpful. Particularly because, much as I can summon up bucketloads of compassion for a small child I can also summon up bucketloads of compassion for a dog. Likening the experience of Teenage NK to an abused dog is something I can really get on board with.

[Hope67]

 

[NarcKiddo]

I am so cheesed off with medics. Why is everything so difficult?

I'm doing pretty well with my exercise tolerance. AI has been really helpful in explaining my lung mechanics. My PT (weights coach) is very responsive and wants to learn new things so is really happy to come on this journey with me. My condition makes my responses to exercise somewhat non standard. My lungs have made my shoulder get angry when I deadlift. Really? Yes, really. He does not pooh pooh my theories, he helps me research, he gives invaluable support. I wouldn't be without him. I allowed this man to take me for walks when I was first recovering from pneumonia.

Anyway, I cannot get specialist help with physio on the NHS. I found a private clinic. I think I am doing well but wanted some reassurance from a professional in lung health that I am not missing anything. Explained the issues to the clinic boss, that I have a fitness background but currently can't walk for more than a couple of minutes even at a slow speed without feeling wobbly. I would like to regain that basic life skill. Was I planning to go on a hike? No, I just want to be able to walk down the road, preferably without sticks.

Physio comes to see me. I had met her before, in ICU. She was passing my bed, not assigned to me, but noticed I was breathing incorrectly through my hi flo oxygen tube. Corrected me. I was wildly grateful. Nobody until then had told me what I was supposed to be doing so I'd had to apply my knowledge of fitness and my own body to do what I thought was best.

She's gentle, she seems nice. Said she had been fully briefed by clinic boss. I showed her my lung function results and pointed out a few specifics. She got out a questionnaire and asked me questions. I scored 19. Out of what? I don't know. What did the score mean? No clue. I gleaned from the tenor of the questions that it was some sort of anxiety rating. I knew I would be scoring quite high on that until we got to the bit about my breathing issues making me feel scared. They don't. I treat them like I should treat emotions - gently and let them sort themselves out, which they mostly do. Panic does nothing. Anyway, before I could ask about my result she wanted to observe my breathing. I was keen to get on to the physical help, so let the questionnaire slide.

I was wearing a couple of T shirts. Did she want me to strip down to a vest so she could see better? No. OK.

The instructions were to close my eyes, breathe calmly and not think about my breathing. Ha ha ha. Who can do that with a physio staring at them, watching their every breath? So I did my best and did good, slow, deep, calm breathing.

Ah ha! You breathe through your chest not your diaphragm NK. Yes. I do. My diaphragm is compromised by my lung condition.

And, NK, you take in too much air! Lie back and I will show you what needs to be done. Let me ask you about stress levels. High? Oh, yes, high. I didn't confess to CPTSD exactly but I did tell her I've had stress reactions since early childhood.

Right, NK. You need to be relaxed. We will do a relaxation technique.

If there is anything that does not relax me it is relaxation techniques, by and large, I told her. I have tried many. Oh, this one will be fine. You don't have to clear your mind, you just need to relax muscles, in order. OK, whatever. Of all the techniques that is the one that works best for me.

So I have a guided relaxation. Then get taught how to breathe. My diaphragm works OK when lying at rest and it was instructive to know how little air one needs at rest. I behaved myself well and did what the lady asked. The appointment ended, there was no time for questions and she asked if I wanted to schedule another. No thanks, I said. I have plenty of breathing to be getting on with. I'll be in touch if I encounter problems or when I am ready to move on.

Off she went, no doubt pleased with her work. She'd spotted a breathing pattern disorder and showed her patient how to go about fixing it.

I did my research afterwards. AI reassured me that taking in too much air is not good and if I can sort that out then it will translate across into help with my movement. I have some symptoms that could be laid at the door of the disorder. There are many other doors they could also be laid at. AI also reassured me that I am not making up the effects of my lung mechanics and good quality restful breathing will not cure all ills.

So I've been a good little NK and done my exercises. I've also observed my breathing when at rest. I don't think I do take in too much air. I was doing deep breathing in order to do calm, managed breathing for the physio to observe. My lung mechanics mean that I MUST use my chest muscles to take in air. Diaphragm alone will not let me take a full, deep breath.

I also learned about the Hawthorne effect, where people alter their behaviour when being watched. In effect my breathing looked dysfunction partly (if not mostly) because she was watching. Do I have a breathing pattern disorder? Maybe. But maybe not. Still, her exercises will not harm me.

But her diagnosis sounds like an easy fix. And she did not even begin to address my actual concern - walking.

The clinic boss asked for feedback. I agonised over how best to reply. In the end I crafted a good email. I explained that none of my actual concerns were addressed. That I had expected the whole thing to be a bit more hands on. But she did not listen to my chest. She did not touch any of my muscles to see what condition they are in. She did not observe me when walking to see the effects of that. I said I am fine with the result of the appointment but as and when I want another one she should not expect me to be passive as I was. I know what I want help with and I will be making the specifics very clear.

I was discussing with my T today as to why I did not get more pushy at the appointment. I was conscious it was a first appointment. I did not want to question her clinical judgement or push her around on day 1. It all got away from me. I think my littles feared that if I pointed out I have done my research and I am the expert on me she might react like my M and find some kind of proof of why I am not, in fact, the expert on me and have no idea what I'm talking about. I felt like I did in hospital, where people were observing me according to some sort of algorithm of people with COPD and not actually seeing the patient in front of them.  I also realised, in talking it through with my T, that this physio has a very impressive background. BUT someone who has spent decades helping people in ICU has by definition not been helping people actively engage in fitness pursuits. I was the only person using resistance bands and doing squats at the end of my bed and I can assure you that was not while I was still in ICU! So, maybe she's not the right person for me anyway.

Waiting with interest to see what response I may get from the clinic boss.

Why is it all so difficult? And I had to pay a good whack of money for the pleasure of that physio appointment. It was totally not good value. I could have got 4 sessions with my PT for that. Sigh.

[HannahOne]

NK I read your post. You ARE the expert on you, and it IS difficult to deal with professionals who don't understand our disorder or medical condition. FWIW how you handled it makes total sense to me. Sometimes it's a bit of a no-win, and a process. The first appointment goes how it goes, and then they see the data of how their intervention did not, in fact, work... and they are more open. Sometimes they're also NOT more open and then you have to move on.

And yes, I pay out of pocket for dysautonomia specialists so when they don't listen and diagnose me with COPD and mild heart failure I'm like ok that's what the scans say but that's NOT THE PROBLEM, ARGH!!!

I'm really sorry. Your advocating for yourself and your understanding and research about your condition is invaluable. I hope the clinic boss takes in your feedback and maybe even gives you a refund. You deserve compassionate care from someone who, even if they don't understand your condition, can take in new information and integrate it to actually help you!

[Marcine]

Hi NK,
Objectively, it is difficult to speak freely with professionals in health care environments.
Their institutional hierarchies which they rely on for protocol and handling all the urgencies, are inherently discouraging of calm, egalitarian conversation.

My neighbor a few years ago was an ER doc. It was fascinating and slightly disturbing to me to experience his different demeanors in his front yard and in the hospital bay.

All this to say, I'm sorry it was so weird and missed the mark at your appointment. You deserve better care.

[zen_racer]

 
I'm sorry it's difficult, NK.  I can relate to having issues getting appropriate care from when I had my gallbladder issues.  In fact, I refused to accept not getting to the point that I angrily derided the doctor to his face, and he just flat out refused to help at all after that.  I should have sued for patient abandonment and malpractice, but you know, I had to worry about surviving instead.

I think you handled it appropriately, but I also agree that it shouldn't be that expensive to get dismissed and not really helped.

I also experienced my own version of that with one entire healthcare network with doctors and surgeons all cancelling on me, and somehow I ended up with bills from it which went to collections because I'm not paying a bill for healthcare that didn't happen. 

You do deserve better care.  I might be generalizing based on my own experiences, but I think we all do.  I would be tempted to ask why you're getting billed when you were seeking help with breathing while walking, and no tests were done to monitor heart rate, breath rate, oxygen levels, or body mechanics while walking.  But then again, as evidenced, sometimes I push unqualified doctors into getting emotional with how they respond.

It also sounds like your M is a lot like mine.  That's why her texts last night set me off so much.  I'm sorry for that too.
  Sometimes all we can do is try our best, and it sounds like you did.

[NarcKiddo]

Thanks, everyone. It is so disappointing that the general experience people seem to have is that experiences with medics mostly suck. Not just CPTSD people, either. I hear this from loads of people nowadays. I worked with medics back in the day after leaving school and my entire career has involved working with lawyers, since I am one. I know how and why people can end up following their professional protocols, and I've worked with plenty of self-important know-it-alls, but it is very disheartening when people in a caring profession just don't seem to, well, care. With honourable exceptions, of course. But by definition we see medics when we are not at our best and it is all too easy to go along with them and hope we will be looked after.

I had a very bland reply from the clinic director this morning, being as defensive as possible without giving me anything to fight back on. I expected that. If I do find I need or want further help from that clinic (they are the only game in town so it's them or nobody) I will be setting out the appointment agenda in writing in advance.

Fortunately, I have the will and ability to help myself. I have a fantastic weights coach and we work together well. AI is immensely helpful in areas we don't have knowledge or experience.

ZR, I'm sorry you were forced to get angry with a doctor to his face and that he then washed his hands of you. I had a similar experience in hospital when I locked horns with the respiratory consultant in charge of me. He was very smarmy and pretended to listen to my concerns but just batted them all away. I locked horns with him again in writing when I was referred back to his team for suspected lung cancer (it wasn't). He and my GP clearly loathe each other and I found my patient notes were full of emails between them trying to score points about administrative matters, while ignoring my care. So I complained in writing, and of course received a smarmy brush off in reply, plus a confected and unconvincing clinical reason for denying me the follow up scan I had requested (and which had been recommended by a consultant radiographer) to make sure my areas of lung collapse had resolved. Sigh.

Oh no! I had better not sigh. That proves to the physio that I have a breathing pattern disorder.  You gotta laugh.

[sanmagic7]

yeah, ha ha, NK!  or not.  this medical thing w/ docs and other practitioners is one screw-up after another in my experience, too.  i think i finally have a doc who knows a little something about the brain/body connection - she brought up something about stress and how much it can affect every aspect of our lives, and i told her i don't think i'd ever heard a doc say that before.  then she admitted that it might be due to the fact that she's married to a psychiatrist.  yes, the blending of those 2 genres can certainly make a difference.

but medical practitioners alone either don't have a clue or are afraid to say and/or give credence to such connections for fear of liability.  it totally sucks.  and the type of thinking you're referring to, not giving credence to the patient's self-knowledge - i mean, you've been living w/ yourself longer than anyone else, observing, experiencing, gathering information about what's going on with you for so much more time than 30 min. in a doc's office exam.  and not listening to that wealth of experience and knowledge is just wrong.

i hope you get better results next time.  i do remember times when i was afraid to say something to a doc cuz i didn't know if they'd be vindictive and do something that at best would have no impact on me, or, at worst, something that could have a neg. impact on me.  so, we do have to pick our battles, but something's definitely wrong w/ this entire picture.  love and hugs

[zen_racer]

In my instance, I'd had a HIDA test done, which tracks the movement of bile through the system.  The person that "read the scan" and typed up the report didn't recognize the issue.  Apparently, hyperkinetic gallbladder is a condition that has only started to be recognized for the last 15 years or so.  So the report said normal on it, but also included the Ejection Fraction percentage number.  When I was seeing my doctor after the scan, and I had already seen it and was excited that it proved the issue, the doctor just looked at it and said "Well the scan came back as normal, so it's not your gallbladder."  I pointed out that it WAS my gallbladder, and that any score above 80% proves that."  He said "Well, it says normal on it."  So my response was "If all it takes to be a doctor is to read a single word on a report, then I could do your job.  Aren't you supposed to understand what that number means?"  Boom, instant anger and denial of any healthcare.

I think having a written agenda agreed to for the visit sounds like a good idea.  It's good that you have the good weights coach.

 

 

[Marcine]

Aw geez, NK, the "smarmy brush off"— terrible.

I agree with you, we should be able to expect that people in the medical professions will be caring and professional.

I am glad AI as a tool is supporting your effort to be informed and empowered on your own behalf.