Miscellaneous ramblings of NarcKiddo

[dollyvee]

Hey NK,

I'm happy you have found the potential root of your lung issue and sorry that the solutions are less than ideal.

If it's any use, I'm on monteleukast at the moment, a mast cell inhibitor, that also comes with a black box warning. I didn't have any effects for about a year, and then noticed when I came off of it for a few days, I had some severe irritability that was difficult to suppress. So, could be good, bad, or good for a while. I need to go back to the FMP and see what is causing the still elevated mast cell issue and if anything can be done about it.

Sending you support,
dolly

[NarcKiddo]

If it's any use, I'm on monteleukast at the moment, a mast cell inhibitor, that also comes with a black box warning.

That is the drug we are considering. Thanks, Dolly.

[sanmagic7]

NK, while i'mn glad the docs have found the reason for your problems, i'm sick in my heart at what they found, and especially since the effects of the possible meds can be so dire.  i just hope they work for you and you feel better, more yourself.  fingers crossed and prayers flyin'!

i know some people have a note in their medical charts that mentions 'medical trauma', and i don't know that there's any particulars attached to that, but several have noted that it makes a difference.  so, maybe that's an option.

in the meantime, i hope it turns out for the best for you.  love and hugs, my dear

[HannahOne]

NarcKiddo, I was so bummed to read that the medication that could possibly help has mental health effects. That's such a difficult decision, weighing risks and benefits. I'm glad you could have an open conversation with your T about it. The concern about sharing about CPTSD with the medics is valid, and the concern that they need to know is also valid.

FWIW the med I'm on can cause mental health side effects and personally I err on the side of not sharing with doctors, since I am under care of a T who is alert for signs of trouble. Not saying that's the best thing to do, it's just what I have done so far. I do have a note in my chart that says I have medical trauma, so they know at least that some things can go wonky, without sharing my mental health diagnosis. The vast majority of my trauma is not medical at all LOL... but it's a flag for them. Maybe there's another way, like what Hope67 suggested, of alerting them without sharing something you don't feel comfortable to share.
 

You will find your way through this.

[NarcKiddo]

In the end I just put on my 'big girl pants' and emailed the consultant to say I have mental health concerns, to tell him I am prepared to trial the drug but not right now due to upcoming stressors, and to ask for his advice. I got a somewhat unhelpful reply via his secretary simply saying it's OK not to take it. However in my upcoming appointment with the professor I can ask more about the medical pros and cons of this drug and can then make a more informed choice of whether it is worth the risk.

The lung consultant has now written the referral letter to the professor. It has given me the opportunity to write to the professor pointing out my view of how I want to proceed with this. The consultant was mentioning all sorts of possible diagnostics that seem pointless given we cannot do anything about what they might reveal. He has also misunderstood my exercise history and needs (which I suspected and is no surprise as he is not an exercise man and I am unusually rigorous in my approach) so I have had the opportunity to put that right for the professor in advance of our appointment. I very much do not want the professor starting to plan routes I am not keen on before I have spoken to him. That's not to say I would dismiss anything, but if people start off down paths they tend to get quite attached to them. I want the appointment to be productive and for me not to have to spend half of it correcting misunderstandings. Every dealing I have had with this professor thus far has felt positive and I think I can get what I need from him.

The lung consultant is a lovely man and we have a good rapport. I think he is doing his best to help me and having seen his letter to the professor I get the feeling that the consultant is hoping he does not have to be the one to tell me to my face there is nothing much to be done. However, 'nothing much' is not the same as 'nothing'. I am making peace with the likelihood that I will not get particularly good results from any of this, but for me the most important thing is knowing what my boundaries are. My coach and I are quite creative and I am hoping to find something I can do that will feel reasonably satisfying. Right now it all feels more like an obligation and I am only grateful that I have enough exercise history behind me to have an ingrained habit and an understanding of the benefits even if it does not feel good at the time.

[HannahOne]

"the most important thing is knowing where my boundaries are." That resonates for me. Knowing where you stand allows you to more clearly communicate what you're willing and not willing to try.

It sounds like you're finding collaborative ways to work with the medical professionals, aware of the limits of their abilities, and with the best in mind for you. 

[dollyvee]

That is the drug we are considering. Thanks, Dolly.

Hmmm...interesting. For me, I started drinking wine again before this reaction and perhaps the potential increase in histamine affected the drugs functioning because I had lapsed prescriptions for a couple of days in the past with no noticable side effects.

I think Hannah was also onto something with mitochondrial dysfunction and the potential for oxadative stress in the cells. Some people have really helped their MCAS with antioxidant support. Another thing might be hidden anemia, which can happen even if the lab results look normal.

I hope you find a way forward with this.

Sending you support,
dolly

[zen_racer]

NK, I'm glad you're finally getting answers.  I'm sorry that the path forward isn't so easy or clear yet.  I like Hope's suggestion of a way to let the medics be aware without sharing too much.

Sending hugs.   

[NarcKiddo]

Something HannahOne said has made me want to come here because it resonated so much. It has to do with abusers telling us what the truth is and we have to agree even when we know it is wrong. I realised today, even before reading that comment, that I get very triggered by the slightest incorrect statement or assumption - especially if it is to do with me and double especially if it is to do with my health.

The lung consultant's letter to the professor contained inaccuracies and it was very important to me to rush to correct them. So I did. I know the consultant was not doing it deliberately or to deny my reality. But part of the reason I find medical stuff so triggering is because medics have their own view of the world and how things should proceed. What questions they will ask and what tests they will order. There is never enough time at an appointment to discuss all the minutiae. so you just get sent off for this and that and have to trust it is right and sensible. Mostly it is, but sometimes it isn't. When I had pneumonia some medic decided I might have Legionnaire's because I had been using my air conditioning for heating as the boiler was broken. She would not accept it was vanishingly unlikely because the units are serviced every year and in any case run through an outside fan so there is no spread of water vapour inside the house. She insisted on treating me for Legionnaire's while they waited for the test results. Ordinarily this would have been fine but in my case my hepatitis drugs had to be stopped because they did not play nice with the Legionnaire's drugs. Nothing I said would persuade her and I was too weak to argue all that much. The next day a medic on the ward round accepted I could not have Legionnaires and was prepared to put me back on the hepatitis drugs and stop the Legionnaires even though the results had not come back. But he then said I could not go back on the hepatitis drugs anyway because they were waiting for the result of the HIV test they took. I had to point out that everyone who has hepatitis has to be tested for HIV and if he would only look in my records he would see I'd had a clear result less than one month ago. Sigh.

That was a bit of a digression, but all medical stuff feels like someone telling you what is wrong with you. Which of course they are because that is what you want to know! But it triggers that horrible feeling of M telling me what I thought and felt and what was wrong with me and had to be dealt with and there was nothing I could do or say. She was the controller and the gatekeeper, and now the medics are the controllers and the gatekeepers. If I want an exercise test I have to go through the scan and blood tests first.

And then the medic might not have listened fully to what I said, and he might write a letter putting wrong information in black and white, and some of the information (or omissions) might be really small but they matter to me like mad because they are WRONG. They are NOT TRUE. I have done my absolute utmost to convey what is right and true. I am not inarticulate and although I tend to dissociate with medics, a) I do not go so far away that I cannot convey the information I wish to convey and b) I am much better prepared these days to stay present, so I know what I said. And yet he may not have heard all that I said. It's not even his fault, we're all human. All that I said may not even have been hugely important or relevant to the issue at hand.

I don't know. This is just turning into a rant. I've spent the last couple of days preparing documents for the professor so he knows what I think is important.

In other news it was my birthday and I told my S I was going out to a restaurant I like. The next day she asked me if I'd enjoyed my birthday and I replied that it had been lovely. Last night I got a message saying 'Lovely how? What was the menu like? How was the service? How was your medical appointment? What did you do for the rest of the day?' Eh??? Why do I have to give her a report on the service in the restaurant? 

[Bach]

NK, I relate heavily to everything you said about the need for truth/accuracy, and about dealing with doctors. It's such a real thing and so hard to navigate! Thinking of you and sending good energy