Miscellaneous ramblings of NarcKiddo

[Kizzie]

So glad it's not cancer Narc KIddo as I said at our Zoom group, what a relief for you. 

Re your NM's latest tactics, I have to agree with others that you are likely not one to share about you (being well trained not to take up any attention!), and now you are. So the message is "Well enough about you, now about me ...." and/or "If you keep talking about yourself then I shall take myself away". Hah, that must be so unsettling for your M and your F to some extent.  He has likely been given the command not to indulge you. 

My NM was like your NM to some extent. When we moved across the country some years back, it was at a time when my M had gone very hard of hearing so we could not talk on the phone however occasionally (low contact). I decided I would email her with our news so that she HAD to hear what was going on. Usually on the phone (previously) or in person she would talk right over me until I gave up and then she could take centrestage. I was constantly made to feel invisible and as though I did not matter which I know you and so many of us here feel. 

Anyway, as a "good mother" she would answer each item of news in a robotic way, but she at least had to acknowledge me. I have to say it was awesome finally making myself heard and visible even if I had to more or less force her and I know she did not really care. It was pivotal in my recovery, in learning to say to others "I am here." She's a wiley fox leaving the room on the pretense there is cooking to be done but at some point maybe you can follow her and keep talking about you, sending the message you are not going to be made invisible any longer. Just the fact that you are unsettling her, changing up the script is worth it.     

[sanmagic7]

NK, i hate the idea that you have to keep on your 'toes' re: what this next round of M tactics might be.  it's also very sad to me that you're the one who has to watch their step around her.  unfortunately, i probably have to agree w/ you that one tactic will be just as upsetting as another.  that sucks.

sending love and a hug filled w/ 'eyes everywhere' so that you can see a shot coming and dodge before it gets you.   

[Larry]

 

[NarcKiddo]

  RANT ALERT 

I'm so cheesed off with the inefficiency I encounter everywhere. I've recently had more than the usual dose of people not turning at the time they promise (or at all), not doing what they promise, not paying attention to detail blah blah. It just makes everything so much harder. I know everyone is busy and has stress - but some people manage not to do this (at least not on a regular basis, I know we all make mistakes).

But it's the medics who (yet again) have earned my annoyance. And that matters. Their mistakes could be very costly to me. I'm a lawyer, so I know just how costly mistakes can be. My mistakes could be very costly to me, after all!

Lung man is, by and large, very good and I trust him. I have just had the lung function result tests and his final verdict. Only when I looked at the fine detail of the lung function tests I realised my height had been wrongly entered. They shaved 6cm off.(And they measured it at the appointment - it is important enough to check and not just trust my telling them what my height is). Sigh. So I reported this to lung man. He ran the calculations again and sent them to me with a nice reassuring message that the changes did not make any material difference. I already knew he was likely to say this, because I have been doing a lot of research about lungs, that my results were such that a height change would make already bad results slightly worse but would not tip the good results into bad territory because the good results were generally not borderline.

However - there were a couple of borderline readings and in fact the lung function physiologist had drawn attention to that fact in his report. I am supposing he would not bother to point out borderline readings if they were for minor aspects. Well, the revised figures moved those particular readings from "rather close to the lower limit of normal" to "severely low".

So I had to email lung man's secretary again (poor woman must be sick of me) to point this out and to ask him to explain why a reading that is now severely low does not make a material difference. I am quite prepared to believe that it will not make any difference to the meds he has prescribed. But I want to know everything there is to know about my lungs, because I am the only person who is able to keep tabs on this, make sure I get followed up as necessary etc. The NHS certainly won't. And I am going to have to pay for any future surveillance because insurance does not cover chronic conditions. So I want to know what needs followed up, when and why.

Then I had to see jerk GP today to get the meds and review generally. In the course of the discussion he blithely said "I didn't know you have Hep C". I did not have the energy to tell him that he has already made that comment. Then he prescribed what lung man had asked. He actually asked me to read out what the prescription was since I had the letter in front of me. So I did, paying particular care to give details of the dosage.

Got home from the pharmacy to discover he has done the wrong dosage. It's not an immediate problem because it is puffs of an inhaler. The one I have should last for a month on the correct dosage. Because he has put in the wrong dosage his system now thinks it will last for two months so I will not be able to get the next one in time unless I traipse back to the surgery and sort it out. Which of course I will do. But really.

None of this is insurmountable, of course. But if this had all happened through the NHS I would not have had lung man's letter. It would have gone to the surgery on the internal NHS system. If I were a person who struggles with IT so could not check the letter online, or who trusts the doctor, I'd just be half-dosing my inhaler for ever.

END RANT

In other news, FOO continues as ever. Mother continues to blank my health as much as humanly possible. I've been discussing this quite a lot with my T lately. Part of me would love to force her to see me but most of me does not want to share anything with her. At all. Ever. I am sharing some information because it suits me to do so and then I feel upset and angry when I am blanked because it is just plain rude. Really I need radical acceptance, but just when I think I don't care a part of me pops up and announces they do care.

[rainydiary]

I am here supporting you in being an advocate for yourself within the systems we must navigate. 

[Little2Nothing]

NK, I have developed a healthy distrust of doctors since 2020. I know they see a plethora of patients in a week, but that doesn't excuse bad pratices. 

I'm hoping everything works out for you. 

By the way, I am stealing "cheese off" as if it were my own! 

[NarcKiddo]

Thank you, rainy diary and L2N

By the way, I am stealing "cheese off" as if it were my own!

Feel free. We do have some fun phrases this side of the Pond!

[sanmagic7]

NK, i'm with you all the way w/ that rant against the docs - self-advocacy is important, but downright incompetence - your dosage, specifically - just goes over the line.  ugh!   very sorry you're going thru this one more time.

i wish you could get more satisfaction w/ your M, too.  it sounds never-ending and impossible to fix.  love and hugs

[Chart]

NK, Hope things have smoothed out a bit since. And "cheesed-off" easily gets by the censors! Thanks for that!
 

[NarcKiddo]

Hee, hee. Ha, ha. Ho, ho. "Smoothed out" you say? Pffft. Buckle up! (Thanks, also, for the ongoing support. Much appreciated.  )

After jerk GP's mess up of the inhaler dose it took:
one visit to the asthma nurse,
two online messages to the surgery pharmacy team (plus follow up reviews by me to see if the messages had been received [yes] and actioned [yes] correctly [NO]),
and three telephone calls
to get the next inhaler ordered. So I now have plenty of leeway - but it is still impossible to tell until early December whether they have made the correct changes to the online ordering frequency so I can get the inhalers ongoing at the right rate.

What I did not say in my last post on the subject was that jerk GP was getting exercised by my actual diagnosis (which is fine, because I want to know, too). I have been on both the asthma and COPD registers at that surgery since 2011, although I was never told to my face of either diagnosis. Lung man went with an asthma diagnosis but I could see as well as anyone when I saw the test results that a COPD diagnosis could well be justified. Lung man had told me he could make an argument for asthma or COPD or both but was going with asthma as the treatment in my case is the same anyway. That seemed to be fine. BUT jerk GP said he needed to know if I should be removed from the COPD register so he had written to Lung man to ask. He then remarked that I would be eligible for better levels of vaccine cover if I was on the COPD register. I want as much protection as I can get. My condition is generally stable but infections are devoutly to be avoided.

I had to speak to Lung man anyway about the lung test query so I asked him about the diagnosis before he had time to write back to jerk GP. Lung test query turned out to be a bungle on Lung man's behalf for which he apologised profusely. It makes no practical difference but at least I now know what is what. As for the diagnosis, it turns out I do indeed have COPD as well as asthma. The original 2011 diagnosis was correct and remains correct. I pointed out he had said it was desirable for me not to get ill and that COPD means I will be eligible for more vaccine cover. So why did he not diagnose COPD as well? He said in his experience GPs who see a COPD diagnosis tend to overlook an asthma diagnosis. They then have a habit of tweaking treatment so it only covers COPD and not asthma and that would be a bad idea in my case. "But your GP sounds sensible," he said, "so I will tell him to keep the COPD diagnosis as well as the asthma." I told Lung man we will have to agree to disagree on whether or not jerk GP is sensible but the main point is that I know all the particulars and I can then make sure that jerk GP or any future medic does not go off track. Sigh. I like Lung man but even he seems to think it is fine to pat me on the head and send me on my way unless I refuse to allow that.

In other news, jerk GP was snivelling and sneezing when I saw him on Friday and gave me his cold. Which went straight to my lungs. This has been their first test since the pneumonia and fortunately I am able to down tools and rest as needed if I feel ill. So I have done so and am feeling much better now.

[Armee]

 

Maddening the lot of it!!!

I can't believe he gave you his cold on top of everything else. 

[Little2Nothing]

NK, sorry you are dealing with this. I hate doctors.

[Hope67]

Wow NarcKiddo,  I am relieved to hear you are feeling better again after catching that cold from your doctor.  Sounds like a nightmare in terms of the medical path and stuff you've been negotiating your way through.

[Chart]

If it weren't such a real horror show for you I would laugh my fanny off. It's like a series about inept superheros. GerkGP and LungMan to the rescue!!! Or not...

Nonetheless, I am impressed at your determination and focus. You are definitely fighting the good fight and keeping your relative cool. Man, bigtime bravo for that. I need some good inspiration these days. Thankyou for that. Small consolation maybe... Keep up the good fight. Sending hugs and positive vibes!