Today was Dr Mike the Super-psych day. I took a moment to complain about how hard single mothering is (as you do). Especially when my son is sick, as he’s a terrible patient. He’s got a sore throat and a cold and he’s constantly needing me and wanting hugs and attention and lying with his head in my lap and I’m tired and running a bit low on empathy.
He said ‘How old is your son? 15?’ He looked at me. Dramatic pause…’He’s becoming a man you know.’
And then I realized what he was saying.
My son has Man-flu!!!
And we laughed.
We laughed a lot today. Laughter is good therapy. So is sitting down with someone for an hour who knows you really, really well and just talking about stuff with them. It also helps when they are intelligent AND educated, and being paid to just focus on whatever you want to talk about. Though not just blindly agree with you. I highly recommend it.
The first part of the session was me complaining that I somehow got stuck with the body of an 80 year old, and I’m only 45. He told me I didn’t look a day over 50, and I felt much better.
My big issue right now is why I have so many things wrong with me, an army of doctors, and yet no one seems to be able or willing to help. Reading my labs and scans and learning what they all mean, from a layman’s point of view is helping. Writing it all down is helping too. It’s therapy.
Bottom line, I have multiple diseases. Some are completely unrelated problems. Some interconnect. Many possible, potential reasons for the same signs and symptoms. And we decided it came down to two things.
It’s complicated. Many of my symptoms could be because of one or many causes. For example, my swallowing problems (dysphagia) could be because of my Eosinophilic Esophagitis (EoE). It could be a neurological problem, or it could be rheumatological. Most likely, it’s the sum result of many causes. I may have one, or more likely, several of these problems. Which is why the treatments frequently don’t work. Or only help a little. I may treat one issue successfully, but there’s more than one disease at play causing that same symptom, so the issue isn’t gone. And so nothing ever gets ‘fixed’. Which is why it feels so endless and futile.
To use the dysphagia example again, I have done several months of elimination diet. My endoscopy was clear of eosinophils, so I should be symptom free. But the swallowing problems, and food impaction still occur. Less often, yes. But it’s still there. And it shouldn’t be. So my immunologist and dietitian are stumped. But it likely means I have another disease process going on, that needs treatment.
Which leads on to the next problem. So many different doctors. And they all only think about the little piece of me that’s their specialty. My neurologist immediately thinks MS or Stroke or Parkinson’s. My rheumatologist thinks Lupus or scleroderma. My gastroenterologist things Eosinophilic disorders or reflux or strictures. My immunologist thinks allergies, possibly environmental allergens.
But no one ever talks to each other. Discusses the differentials, or the most likely causes, or the treatment(s) most likely to be effective. They all just chip away at their little bit. Which gets frustrating, cos it just isn’t that simple. They can only see parts of the whole. But they are busy professionals, and they don’t have the time to have a conference on every complicated patient. Their therapy might be completely successful, but it doesn’t feel that way to me, or to them, because I still have the other stuff going on. And we all get frustrated. And disappointed. And feel like failures.
The joys of being a complicated patient. What’s missing in the medical model of chronic illness care, particularly with complicated cases, is someone to oversee the whole mess. To connect the diagnostic and treatment dots.
As it is, it’s up to me, the patient, to do that. But while I can read the articles and the studies and, armed with my medical dictionary, come to some sort of understanding of what’s going on, I don’t have the years of experience and clinical practice that the specialists do. I don’t have the diagnostic skills to pick up signs that might clearly rule out or rule in a possible answer. Nor the education or experience to know how likely or incredibly unlikely a theory is. Or the success rate of a treatment in the real world (results of clinical trials are not always replicated in general practice, and clinical experience is worth more than decades of reading study results). I also don’t have a background in science and statistics to interpret the base data, I just have to trust the conclusions drawn are correct.
In short, I’m not a bloody doctor!
And learning what the words mean, is not the same as becoming fluent in a language. I don’t have context.
Plus, I’m sick. I don’t have a lot of energy for this stuff. And I have a memory like a sieve. Which is another good reason to write everything I learn down, in simple terms. So I can read it back tomorrow when I’ve forgotten what that thing-o doovit was again.
And it’s also VERY important to recognize that I’m learning about pieces of a puzzle, and I don’t have the education to understand it all, and this is A Very Bad Idea if I’m going to get stressed out or anxious about it.
I’m not prone to that. I find research usually makes me feel better. But sometimes I do just scare the crap out of myself for not reason, so its worth noting. Dr Google can be dangerous when you’re untrained like me. And, as always, NOTHING I post is medical advice. It’s mostly personal ramblings and my interpretation of information I have found. ALWAYS talk to your doctor(s) about anything that’s worrying you. Not Dr Google, not a blogger like me, or a friend.
You can talk to bloggers like me and friends for support though!
But back to Dr Mike. So then we switched tracks.
The other more worrying thing that Dr Mike the Super-Psych pointed out, was that he’s noticed changes in the last four years. Not just emotional changes, though my moods are certainly erratic some days. He’s noticed cognitive changes. Slower thought processing. He’s trained to spot these things. Poor memory. I talk slower sometimes. I stutter sometimes. I have great big pauses while I’m trying to reach for a word or a phrase, or remember what the hell I was talking about in the first place. I say the wrong word on a regular basis. A similar sounding, but wrong word, with a completely wrong meaning. He knows what I mean, because its close, but no biscuit. When someone recites a list of numbers it is really hard for me to write them down. I don’t know why. I just have to think so hard about it. And I often transcribe numbers. Taking down someone’s phone number is a living hell for me…lol.
I’ve noticed this. They are little things on their own. But again, put them all together and have them happen all the time and it gets frustrating. Writing is far easier than speaking. Again, I don’t know why. I have much less difficulty stringing words together when I’m writing. But I have some difficulty stringing words together in conversation some days. Maybe I’m just out of practice. Must get out more. Must get a life!
I have real memory problems. I have been shown documents with my signature on it that I have no recollection of signing. (Luckily I didn’t sign the house away). I have transactions on my bank statements that I have no recollection of. And I don’t have a husband to explain them to, so there’s no secondary gain here J. I have things on my ‘to-do’ list that I just never get to, because I keep forgetting. I set reminders on my phone and I just swipe them away.
I know you’ll all say that happens to everyone. This is different though. (Yeah, right. It’s always different when it’s happening to you.)
It’s different because someone else has noticed. I wonder if anyone else has.
So he’s sending me for some memory testing. To give us a baseline. Unfortunately we didn’t do one last year, when I first got my interesting brain MRI. We talked about it then apparently (I don’t remember – sorry, last time, I promise) but we didn’t’ do it. Now with more pathology showing up on my brain scans, it might be helpful to see where I’m at now, so that if things get worse (or better!) we’ll have an objective measure to compare with over time.
And then we talked about our Easter plans.