My energy is lower than ever. I wake up, and all I want to do is go back to bed. Sometimes I do – but when Dave leaves for work I make sure I’m up. It’s my personal sleep limit. I already know that I’d stay in bed all day if I don’t make the effort to get up. It now takes two full litres of fluid before my dizziness reduces to a point where I can walk in a mostly straight line. Until then, my blood pressure stays firmly under 90/60 and I feel like I have the coordination of a toddler. I have a constant inner burn throughout my abdomen, which turns into a pressurised heat in the lower right hip, often radiating through the joint and ass cheek and down to my right knee. From laying down, I have to sit up for a moment, and standing up is done very carefully. Moving too quickly, or looking around while walking, is extremely disorienting. Speaking is another adventure, where I’ll have a thing to say but I can’t seem to make the words I want to come out form properly, if at all. It’s frustrating, sometimes, trying to stammer something out while others try to help me with those words I’m struggling with. A great conversation suddenly turns into a distracting game of charades. I’ll be in a familiar place I know well, but not really know where I am. I stared at my underpants the other day for nearly 5 minutes trying to figure out which way was the front. And when I did, I still put them on the wrong way. (I just no longer do anything until I have my fluids. I’m really useless and dumb until I get that done….). And there are some places, especially in public with background noise, that I actually can’t hear what a person in front of me is saying. I seem to be having a struggle separating conversations, which never used to be a problem, and combined with the ringing in my ears I have a hard time really hearing what someone is trying to say – or I just hear wrong altogether.
A short while ago, what used to be “WHAT the ACTUAL hell am I doing?!” at all my little moments has become just a normal day. And we laugh about it. There are worse things to happen, right? That’s what I keep reminding myself. And so do others.
Which, if you really want to think about it, is actually quite invalidating. I know not to say that to others, because I know those twinges of frustration I feel when they say it to me. But I know they are coming from a place of kindness and concern, and just want to help. I understand that, sometimes, there are just no words that can help and those words which are offered are often awkward ways to say that they just don’t know what to say. I get that, and I’m grateful for them.
Sometimes, they may even feel I’m making it all up. And that’s really ok, too. What they think doesn’t really matter since they can’t really know what’s going on.
I don’t think about it further than letting that thought float away into a thankful smile.
Last weekend I struggled with intense abdominal pain, and I kept saying to myself, “if it doesn’t get better tomorrow, I’m going to emerg.” Finally, when it got worse on Monday, I realized how dumb I was being by waiting and went in.
When there are already so many health issues going on, suffering through intense abdominal pain like I have in the past is not ideal. I’ve really learned to step outside of myself in order to properly make decisions like that. If someone were to come to me with the complaints I have now and ask me what they should do, I’d have suggested going straight to emerg. Well – that’s my answer, then. Why is it so hard for me to do that for myself without arguing?
Funny (not funny) enough, I know the answer to that.
I remember when I was a teenager, and I had what I now believe to be extreme eczema on my fingertips. It hurt so much, and trying to participate in any sports or even holding a pen was painful and would cause my fingers to bleed. I remember begging my dad to bring me to the doctor, because it wasn’t going away. We tried everything – lotions, antibacterial creams, antifungal ointments – anything over the counter. It wasn’t going away. He finally did, but he came into the appointment with me and insisted to the doctor that it was sandpaper I was using in shop class, and I was being a “putz” and not using gloves. He made sure the doctor knew that it wasn’t his idea to be “wasting the doctor’s time” but that he was only doing it so I would stop asking. I was so embarrassed. I remember it so clearly, and how much I hurt (both emotionally and physically), and how much I didn’t want to ever ask to see a doctor again, no matter what it was. The doctor gave me a steroid cream and my fingers cleared up after about a month, but I rarely asked for help because of situations just like that which were, in a way, worse than the complaint I had. Comments such as “suck it up” and “it’s not that bad” were common, and I started to simply ignore pain in general so that I would avoid seeming like a “wuss” to my old man. I wanted to live up to his expectations.
When I moved to Edmonton, I had a couple of different doctors that dismissed any complaints I’d mention during yearly physicals, so I didn’t bring them up again. Many of those complaints are now links to a much bigger issue. It makes me wonder if previous physicians had paid attention, if this could have been resolved faster?
But, there’s no point in continuing that thought. There’s no changing it now, just moving forward.
When a person’s complaints are dismissed by others – especially their health care team – it sometimes makes that person push through symptoms that shouldn’t be ignored because they’re not taken seriously enough, and they start to wonder if it’s all in their own head. I’m definitely guilty of that, but this time I can’t ignore it. Nor will I – this idea of minimizing the way a person feels is a nefarious social habit that I would love to never see again. When someone says, “Ow, that hurts” I’d love to never hear the words “Suck it up” again. So what if you have a worse pain that you don’t complain about – pain is subjective, and people feel different things in different ways. That won’t make the pain go away for anyone.
Just because one person is having less struggle than another person does not mean that person isn’t in pain, and the pain that person feels does not deserve to be minimized just because someone else thinks they have it worse.
Seriously, that shit needs to stop. Pain sucks, no matter how much, what kind or who is experiencing it, and no one “deserves” to be in any kind of pain, no matter how stupid the action they take that causes it.
Anyways. Moving on.
While there are definitely some GI issues going on, they also found a cyst or mass on my ovary, as well. I wasn’t entirely surprised, really – I’ve been feeling a lump near my hip anyways, but I guess I had just thought or hoped it was something else. I was diagnosed with minor endometriosis in 2009, my mother had extreme endometriosis before her hysterectomy, there’s a history of ovarian cysts in my family – I guess it’s to be expected that I’d have some troubles with my internal lady bits.
There’s absolutely a reason (or, maybe, many reasons) that my body is rebelling against me. I have ideas and thoughts and suspicions, but there’s no way to know for sure, really, until we get closer to finding out what’s going on. I’m not just sitting idly waiting for a cure to come. I’ve been reading studies and books and publications, and finding out different angles that might be helpful in reducing symptoms. I’ve reduced my eating habits to bare basics to try to find a correlation between the reactions of different foods (and I’m starting to see some patterns, but nothing definitive yet since I am still struggling with my sugar intake… it’s my bane. And the husband doesn’t help with his cookies and danishes he brings home regularly. Curse you, tasty cookies…..)
It’s a lot of experimenting, a lot of patience and a lot of standing my ground in those occasional moments I do feel dismissed. Fortunately, there have been limited dismissals. I feel my family doctor may have not taken me seriously, at first, but he is now after an hour long appointment one day where he realized how far back many of the symptoms go. He has been my attending physician for only a year or so, so we’re playing some catch up. The only other time was the neurologist I saw in ER for a brain CT who tried to tell me I was “more depressed”. I suspect psychology is a little far from the field he specializes in, and I understand that it’s hard to really know how a person is feeling. I understand how he came to that conclusion, but it did not make it less frustrating at the time. Depression is something I feel confident saying I have not experienced for a number of years. It’s in my medical history, to be sure, but is not currently a part of my life. I didn’t argue, however, since I wasn’t there to see him specifically – I was there on my own doctor’s order in order to get a CT scan faster than they could schedule one for.
Some people may think this is backwards progress, or that news isn’t good or that things aren’t happening.
Some people would (and do) look at the situation I’m in as frustrating and hopeless.
But I’m not that kind of some people. I’m that kind of somebody that sees every hint and clue as a direction to take, or a crumb to follow. So many things have been ruled out – and we have an actual direction to work towards, now. I see an internist soon, I am having an abdominal CT soon, and we’ll move on from there to see what comes.
Being a doctor isn’t easy, and diagnosing even less so. Many of the people I’ve spoken with believe there’s an easy test for everything and it shouldn’t take so long to find out what’s wrong – but the reality is that science hasn’t caught up to those needs. We don’t have the funky body scans like they do in Star Trek, yet. The best way to diagnose something is first to diagnose what that thing IS NOT. This takes time, patience, and sometimes allowing things to get worse in order to find those breadcrumbs to follow to figure out where to start fixing the problem. I understand the frustration of doctors running circles around that thing you know is going on – because sometimes they don’t want you to be right. They don’t want to admit that you know more than they do. But you DO know more. You’ve lived with your body. You know it better than they ever will in the way that you know how it feels, and you know when something is not right. You don’t need to know anatomy and physiology in order to tell someone that something isn’t right (although it certainly helps in order to express how you feel, or to understand why there’s an issue, and possibly how to fix that). Physicians are supposed to help you. Doctors are people too, however, and ego often gets in the way of progress. There are good ones out there. They exist. They’re not all equal, and sometimes you have to find one that fits. Don’t sell yourself short, and don’t minimize what you’re feeling.
Take care of YOU.