I’ve been having a rather embarrassing issue since last year that has got progressively worse. I’m not saying what, because like I said it’s embarrassing. In fact I have a few things that I just don’t like to admit to myself, let alone others. It’s mostly because they’re embarrassing and it feels like admitting to them means I lose a little more of my dignity than I already have.
But along with my worsening mobility, tremors, pins and needles, burning pain etc, it’s become quite concerning for me. So I put my big girl pants on and booked to see a GP. I specifically requested a female GP to ensure I didn’t have to see my assigned one, who’s a bit of an ass.
I haven’t seen this one before, and I’d made the decision that I was only going to talk about this singular issue. She then did something that blew me away, which it really shouldn’t have, but she asked me ‘tell me everything, from the start, and cover all the changes to your mobility’. So I did. I told her it all, from pre vaccine to post, but without mentioning the V, just that my health changed.
She asked whether I could think back and pinpoint anything that happened when these changes started. So I took a deep breath and eventually told her it was the Pfizer vaccine and described what happened in the hours, weeks and months since. She asked what had been done to investigate my reaction, which was a shock in itself, but I explained it hadn’t and that I’ve had a lot of issues when mentioning it. She enquired and so I told her of doctors laughing at me, rolling their eyes and telling me not to be so silly. She was upfront and told me that they’re in limbo as so little is known around the vaccines and the reactions but that she hoped more would come out soon.
I have reprogramming next week so she’s asked me to query with my surgeon whether there could be a connection with my neurological issues, or implant, and this issue I raised. She also wants to hear his suggestions on what investigations and tests he wants to see. She’s also going to get in contact with a relevant specialist to ask their opinion and she’s going to call me a few hours after my reprogramming to discuss and come up with a plan.
She’s since been in touch to ask if I’ve had an MRI since September 2021 and if not that she thinks this should be repeated.But I am fairly certain that the implant I have, in this specific location, is not FDA approved.
Of course I should be elated that she wants to help, and I absolutely am. I came out the appointment and cried because I was finally seen and heard. But not even just that, she was genuinely interested and wanted to know more than what I’d planned to raise.
I’ve posed my questions to my surgeons secretary via email and asked about the MRI, what the risks are and what the alternative could be. I’d rather not have to raise the issue in front of the guys that do my reprogramming! I’ve quite literally spent years trying to get the symptoms that have disabled me, aside from my HC, seen to and investigated. So I’m really grateful someone finally is, but I’m terrified it’s too late for me to have the required scan. The doctor is querying possible demyelination. Which while a scary thought, I’d rather know what we’re dealing with rather than pretending that any medication is working or that I’m not getting worse. But I hate the thought that this is the best I’ll ever be – so I’m trying not to go there! The thing is that I’ve been so convinced that all my issues stem from a problem with my nerves and I just couldn’t get anyone to listen to me. But when I give up, and instead try and handle a singular issue rather than all of it, finally someone wants to listen to me and hear all of it.
So we will see. I don’t know if I’m going to post this, I don’t know that I want to jinx things. But you’ll know if I have obviously because you’ll be reading this, or you’re wondering if I’ve had a severe bought of brain fog and just published it on autopilot. Who knows? But that’s where I’m at and what I’m dealing with, hopefully, finally.
I do want to say a little about what healthcare appointments are like for me and others in my situation. When you get gaslighted, laughed at, made to feel like a silly little girl with her silly little questions and even have doctors roll their eyes at you it’s traumatic. They not only deny my reality and the truth of my experience, but they are willing to belittle me rather than admit they just don’t know. This week I had a doctor who apologised and admitted they just don’t know. And I am SO good with that. I really truly get it because I am, and have been, experiencing this for nearly 3 years and I don’t know either. But I do expect them to want to know or try to. My assigned GP said to me a while back that he can’t help me because he’s never heard of my condition and so doesn’t understand my medication. This doctor reviewed my history in front of me, and when she got to Hemicrania Continua and said she’d never heard of it, I explained that very few had because of how rare it is. She announced ‘that’s fine, it gives me something to read up later’. As easy as that. She gave a fuck and that meant the absolute world to me. To go to an appointment and not experience any of the horrible things I have previously, for my anxiety before and during to have been for nothing, is amazing. The treatment I have received previously causes medical PTSD. I, and many others, get the same knot in my stomach and the same sense of dread before an appointment as I did when dealing with my debts. Healthcare shouldn’t feel like that, not for anyone.
The issue I went in for has been happening since last year, I have mentioned it as part of my last GP appointment and with the rheumatology physio, but it was glossed over. I should have dealt with it sooner or made a bigger point about it before it became a serious issue, but that’s how badly I feel about healthcare appointments. I’d genuinely rather pretend like these concerning changes are perfectly normal than book an appointment. So this week I am extremely grateful for that doctor, and I truly hope she can help me and that the surgery will agree to assign her as my GP instead.
HC & Me 