Almost a year… now what? The slow progress of getting a diagnosis…

A few days ago, I had my long-awaited appointment to sort out some constant pains in my lower left abdomen / pelvis / side area. I had been waiting for this appointment for almost a full year and I was extremely nervous but grateful to finally get this pain sorted out.

Unfortunately, I was apparently more optimistic than I should have been.

Not only did the specialist seem excessively rushed, but he seemed to think there was absolutely no reason I should have been in there to see him. Now don’t get me wrong – he was certainly pleasant enough. He was all smiles and ‘Hi how are you’ but also made it obvious he wanted to get through this appointment as quick as possible.

He dismissed my concerns about Endometriosis saying that I’ve already been cured since they removed everything already and that he wasn’t sure why I even needed a PAP smear since he removed my cervix already, but he’d do a vault smear to ‘make me feel better’. (Umm.. why have I been getting them done with my GP then? Why do I still get in the ‘it’s time for your pap smear test’ sheets?)

So after a lot of pain, and some bleeding I was left with a sheet for bloodwork (just to ‘make me feel better’) and a lot of disappointment. I was told maybe I should just try Midol or Aleve if I get too sore…

I have no idea how the medical system works in other places – but here in Ontario it seems to be so incredibly difficult to be taken seriously as a woman who is dealing with chronic pain. And now with this year long wait for absolutely no gained ground on getting things figured out – I’m back at the starting line.

Endometriosis was ‘the devil I knew’. Sure, I wasn’t looking forward to dealing with that whole tangled affair again – but I at least knew what it was! I’d had it before, and I have been doing research on it. I felt like I could at least tackle having the painful condition because I knew enough about it. It was a far less ‘scary’ reality to swallow.

Instead, I have a hundred unanswered questions, and more things ruled out then even suggested.

Severe Diverticular Disease and some IBS is a confirmed diagnosis, but it’s apparently involving the right ascending colon – which means that this lower left pain shouldn’t be involved at all. Does it mean that this has still been the problem all along and it’s just really effecting the wrong side for some wonky reason? I mean… heck I’m practically Frankenstein at this point with how my insides are likely all rearranged – is this a real possibility?

Is it something else that I now need to worry about? The pain definitely is showing no signs of going away. Heat pads are still my friend and sometimes the sharp stabbing pains nearly double me over.

Or is this just… life now?

With how our health system is – getting any sort of diagnosis takes multiple months if not years. I can spend a lot of time waiting for these tests and results to come back only to have the same crushing disappointment if nothing comes of it. Or worse… it gets massively bad and does so much damage while waiting for someone to find the answer.

Where do I go from here?

There is a certain defeat that comes from living in the shadow of an illness that you can’t name or can’t treat. Especially if the pain involved isn’t obvious to the naked eye. The term ‘invisible illness’ is very accurate because it’s so hard to quantify it as real to someone who can’t feel your discomfort. If there is no red flag markers or visible sign that something’s wrong… it’s far too easy for people to simply chalk your pain up to delusion or over exaggeration. It’s way too easy for them to wave off as unimportant or not their area to fix.

I plan on waiting for the bloodwork results to come back and then I suppose I’ll have to call my family doctor. I’ll just have to ask her what she suggests I do and how I should go about this consistent pain. And of course, I’ll just keep relying on my heat pads and living with the ache and pinching that keeps happening inside my lower stomach. In all honesty, I’m unfortunately getting used to it. It lives with me like my Chronic Migraines and I’m starting to think that’s quite an unhealthy coping mechanism.

The worst part is I -know- there are plenty of other people dealing with this in Ontario! (And likely in lots of other places) And although I focus more on women dealing with the dismissal of painful symptoms, I know some men deal with that too. I think it’s just often times more accepted practice that when a woman is sore to just sort of… ignore it. Then again perhaps I’m just basing that on a lot of my own personal experiences over the years.

Either way, one has only two options in this case. Give up. Start over.

I’m not about to give up. So I guess it just means I’ll have to start again…

Controversial opinions and the fear of WWIII

To understand this blog post, you are going to need to know a few tidbits of personal history. When I was in public school, I had an irrational fear of being wiped out by a nuclear bomb.

I know, sounds odd, doesn’t it? Well, I guess I was a bit of a strange kid.

I grew up in Southern Ontario in the 80’s / 90’s. It’s not like we had Nuke drills or anything like that. In fact, one could almost say that growing up in that timeframe was ideal. Like most kids my age, we all scrapped our knees, went tobogganing down unsafe hills (and I hit my fair share of trees along the way), and I – like many kids of my generation – still very much remember the unique taste of drinking water straight from the garden hose. It was a time before Selfies and Viral videos, and all that modern noise we have now.

But still, I had this fear. A bone-shaking, night panic, tremor induced fear. It likely wasn’t helped along by a teacher in public school forcing us all to watch a terrifying video about what happens during a nuclear bomb attack. And I do say ‘forced’ since I tried my hardest to get out of watching that damned thing – but my teacher would have none of that. The black and white shots of kids on bikes and playing outside being superimposed by x-ray like effects and horrible music didn’t help that fear along.

But hey – life moves on. After a while those kinds of irrational fears start to take a further and further backseat to other more likely and mundane issues and worries. You start to ignore those little nightmares and only get troubled once in a while from really bad and unlikely dreams.

Until of course we are now sitting in the ‘Decade of Disasters’ where there is now a lot of talk about Russia, Nukes, and the dreaded moniker of WWIII.

All of a sudden those irrational and unlikely fears that I had as a child starts to rear its head around and knock on my door again to remind me that – yes. I am still afraid. And nope, there’s still nothing I can do about that fear. Other than cope with it I mean.

And the worst part of this is the fact that having any sort of opinion about the current situation going on in this incredibly global scale is extremely controversial. Just as everything seems to be lately. You try to share your thoughts and open a discussion about any sort of geopolitical, medical, or personal opinions lately and you are somehow guaranteed to upset one group or another. Which is not what I wish to do at all – but discussions are born from personal opinions and sharing one’s belief. You can’t have an open discussion about any topic when either side refuses to hear another opinion but their own.

So – here in this safe place I’ve carved out in the vast library of WordPress, I’m going to share my opinions, fears, and thoughts about the current geopolitical mess going on in the world. Hold on to your horses. This will be a long one (or… at least longer than it is already.)

I am absolutely no expert in Ukraine, Russia, or the borders between their countries. In fact, before this entire mess went down over there, I must admit that their political issues didn’t factor into my life at all.

Between my health, my family, the whole mess in Ontario and the Pandemic as a whole – I have a lot keeping my focus close to home.

Yet I’m also an avid reader of the news and I try to keep informed on big issues happening elsewhere in the world. It’s how I kept informed about the issues of Covid before hit came knocking on Canada’s shoreline.

So, like watching a train crash in slow motion, I’ve been keeping my eye on news reports coming from the other side of the world and one can barely touch TikTok, Twitter, or Facebook without being swarmed with various accounts, live videos, or personal stories from the front lines. It’s been brutal and hard to ignore. The sheer number of civilian deaths have been hard to understand from here at home. And it seems so… pointless.

But I’m not FROM there. I don’t know the full story. And as I take in all this information – I also have to factor in that what I see and hear may not be the full story. Only a massive amount of parts.

Heartbreaking parts indeed – but not the entire picture.

Do I think Russia should have invaded Ukraine? No. I personally think that Putin desires a huge win, or to recapture some sort of war-won glory and expected Ukraine to roll over and die with minimal effort.

Again, controversial I know, but I state that this is only my personal opinion on things. Maybe he had his reasonings, or maybe it was just very bad intelligence, but let’s be honest – Putin has done some shady stuff in the past and the sheer number of reports involving bombs and missiles hitting civilian targets is just too hard to ignore. Those things don’t just happen over and over again without oversight issues. Either its fully intentional to try and take out non-military targets, or you are just fully incapable of aiming at all.

Do I blame other countries for getting involved, even if this means escalating Russian threats? Well… there’s the thing.

Short answer is… no. No of course I don’t blame them.

Long answer is – nothing is ever like it’s scripted in action movies or books, is it?

What do I mean by that?

We all want to root for the underdogs. I feel it’s human nature to see someone in a David vs. Goliath situation you want to root for David. If someone is being bullied, most likely you are going to go out of your way to stand with the one getting bullied. To say ‘No, this isn’t right! Stop it!’. In the comics, movies, television, books… this is the moment the Avenger assemble, grenades are jumped on, the Doctor shows up to find a solution and end the fighting. “Not because it is easy, but because it is right”.

It always works out so well there. It’s cinematic and quite dramatic and most of the heroes go home at the end. The curtains close and the applause echoes. No one questions that something should have been done because it’s easier to see what’s right vs what’s wrong.

Thats how we want things to go. Good guys win. Bad guys don’t. Generally, at least.

But that is fiction. Reality is a heck of a lot messier, and incredibly difficult to predict.

This generation has access to media that many other generations before us didn’t have. People are livestreaming cruise missile attacks in their backyard and streaming it back to us on our computer screens. There are multiple photos of victims and bodies and destroyed buildings. Even if you try to weed out the images – the stories filter their way in. It’s often times a little too horrible to ignore.

We are living by proxy through a war in real time. It somehow makes it far more tangible than other wars that have gone on unnoticed during our mundane at-home lives. And let’s be honest. There have been other wars. Peace… is not a human state for long it seems.

But certain threats are bigger than others.

Russia has made not-so-veiled threats at using nuclear weapons. There has recently been a statement from a Russian official about a real possibility of WWIII if the Western world gets involved or if Ukraine does indeed join NATO. And who knows… it seems like they are serious about those threats.

This isn’t just a world away anymore. If Nukes fly, this goes from a controversial opinion about geopolitical events half a world away – to childhood nightmares being my adult reality. There is a hollowness in my chest thinking about that. A cold sweat that hits at the back of my neck.

We don’t have Hollywood writers or comic book heroes to pull out a last-minute Hail Mary for us. In reality our fictitious happy endings are certainly not guaranteed (and one could argue ‘not likely’ either). The heroes don’t always win, and most often than not history only remembers the victors, not who was the David or Goliath of the situation. Nor how many bodies that victory was built on.

Do I feel we should just let them deal with their own issues and let Russia be without consequence for the sake of global safety?

No. Unfortunately, no.

Because in the back of my mind I still believe that old hero’s statement. Do good, not because it is easy. But because it is right. And I understand that if you give in to a bully and they get what they want with threats and aggression… it only makes those threats and aggressive acts more useful in the future. It emboldens them to keep using a tactic that provides them with what they want.

But I don’t know what the solution is.

I fear what will come from this and I have no plan or idea on how it all should go down. Again… I’m no expert on any of this stuff. I’m still struggling to get my mind around it.

All I know is that it’s a very turbulent time in history and bringing in the threat of Nukes and a global involved war only escalates that turbulence by a thousand. The world hasn’t recovered from any of the other major issues it’s been dealing with in the ground-shaking 2020’s and it looks like things refuse to start improving.

So that’s it. That’s where I stand on the situation. I watch, and worry, and try to understand this self-destructive part of human nature that seems to rear its ugly head once in a while. My heart breaks for those suffering the worst parts of this war and my head hurts thinking about the global consequences of it. All the while trying to mentally sort out my feelings about the whole mess without stirring up any of my old mental demons about the ‘big one’.

One day I hope we all look back at this time in our lives and are able to just be glad we came through it at all. ❤

Compromising and getting ‘spiked’…

So – I did manage to finally get my booster shot. It was however not without a lot of issues attempting to get it!

Between the multiple times booking the appointment through the various online ‘portals’, only to have the appointments cancelled on the day because of vaccine shortage – I finally just bit the bullet, rebooked and managed to get in the same day.

However, it was not without a certain amount of compromising.

The shot I ended up getting was actually the Moderna Spikevax rather than the Pfizer shot I was hoping for. To be clear, I wanted to stick with Pfizer only because that’s the type I’ve gotten up until now and I knew that the side effects for me were very minor, not because I think that the Moderna is harmful in any way. I guess you just learn to trust what has worked well for you in the past.

I decided to take the risk at getting the Moderna only because it was really the only one available for me until Ontario releases the Pfizer brand Spikevax later in the month and friends I knew had received it with no complications. Plus, I really wanted to get this shot done before the fall wave gets much worse in Ontario. Already they are announcing that our numbers are unfortunately rising again and are expected to continue to climb again. (Even though Ontario health ministers have mentioned they refuse to lock down again – I still have a nagging fear that either our crippled hospitals will collapse, or they’ll have to start trying to force more restrictions once again. Once bitten, twice shy…)

Side effects were worse with this one then with the other shots I’ve received. Flush, a slight fever, Achey and cold feeling. The usual sore swelling in the injection site. I suffer with Chronic Migraine – so can’t tell you if the shot itself gave me headaches but I certainly have been feeling a bit under the weather for the last few days. Considering I’ve avoided getting real sick for a while it’s been annoying but necessary, I guess.

Luckily it is receding now and I’m starting to feel a bit better.

And most of all I am still glad I got it.

I know a lot of people have just given up on COVID precautions and the world has rushed to return to the normalcy that it new pre-2020 madness. I respect that choice and the freedom that gives them. It’s your life – you got to do what you feel is best.

I just know with my own chronic health conditions I need to keep on top of things for my own personal well-being. Even when I still get rolled eyes and snide remarks for wearing a face mask or bothering with the shots still.

One thing this whole situation has taught me is that there are always going to be multiple ways people cope with things. And there are going to be hundreds of ways people look at situations. Some may agree with you, and a whole lot more probably won’t. But that doesn’t mean that you need to abide by their comfort zones.

Social media, the news, the immense amount of noise that comes on our newsfeeds and through our devices daily and even the beliefs of our friends and family – they can all be so very loud sometimes. Trust this, not that. Listen to this, not that. This is a lie, this is the truth, this is a bit of both… It’s a lot sometimes.
Take enough time to filter through that noise and come to decisions that you can live with that feel right for you and your family. Don’t let anyone pressure you into things you aren’t comfortable with or try to bully you into believing what they believe if it just doesn’t feel right.

The world is still quite a messed-up place. All any of us can do is just try our best to keep safe, try to keep our mental health stable, and above all – remember to be kind to those who walk their own paths different from ours, even if you don’t agree with them personally.

For me – Yeah, I’m going to keep up with the masking for a while longer. I’ve still got some major medical appointments coming up this month (Whew! Finally get to see the specialist I’ve been waiting almost a year to see!) and the last thing I want to do is ruin the appointment by getting sick right before… fingers crossed I can avoid anything like that happening for a little while longer!

Happy fall everyone! May this spooky fall season bring you a lot more treats and far less tricks…

Vaccination Frustration…

Trying to book my 4th COVID booster shot has been horrendously difficult. Which considering how many people seem to think that the pandemic is completely over and a thing of the past you would think that getting an appointment for such an ‘unnecessary’ thing would be easy as pie.

Let’s be honest – right now the world is in a weird kinda place.

Most people are carrying on with their lives as if the Pandemic was just a really bad fever dream. That or they believe the whole thing was some government conspiracy hoax that was blown out of proportion in order to contain and control the population. Some people think that we all lost our collective mind over a simply cold virus and couldn’t care less if they catch or spread it.

And there are a lot of people who are just plain old tired of the weight and worry of the whole ordeal and would rather just ignore the situation entirely and pretend the world is completely back on track.

I sort of fall into the category of realization that the COVID virus is never going to just go away. We missed that boat and this pandemic is destined to become an endemic flu-like season that will probably haunt us every year. I’m under no false belief that we can still beat this thing – I think that dream has sailed away.

However that doesn’t mean I intend to throw all caution to the wind and just accept that fate. I still do what I can to avoid catching it or giving it to my family members.

So I’ve tried going through the right channels and booking at a local pharmacy for yet another booster shot, only to have each appointment cancelled the day of the dose because they are out of supplies. Now that would be understandable maybe once, but immediately after getting the text that more vaccine is in stock, booking an appointment for the very next day (Which was the earliest I could book for) and then having the appointments cancelled on me again due to lack of supply is frustrating! I mean it already tends to take a good few minutes to navigate through the confusing as heck portal to book the shots – only to have it cancelled on the day.

When calling around it seems a lot of the walk-in appointments are being held off due to lack of supply as well.

Now this is probably just a timing issue – right? It’s fall, people will probably be rushing to get a top up due to the upcoming flu/fall sickness season. Plus schools being in and all that stuff.

I mean technically that’s why I’m trying to get booked myself. The last dose I had was in January of this year. It’s been a while. So far I’ve avoided getting Covid (or thankfully sick at all really. Even avoiding the the regular common cold so far, which for me is huge considering my crappy immune system. Yay for masks I suppose?) but I’d like to continue to avoid the nasty bug!

The fact is with the virus becoming endemic, and most of the pandemic restrictions and suggestions being dropped – I’m likely to get it at some point. In this day and age I think we will all unfortunately end up with it once or twice.

But that doesn’t mean I can’t try and take every available precaution to avoid it, or at least lessen it’s risk at being serious. I completly understand other people may not feel the same way and rightfully think I’m nuts for still getting the vaccines. Personal choice.

So for now, we wait. And let’s hope my immune system continues to be at least capable enough to avoid this darn thing before I can help it out a bit.

Keep staying safe out there and do what feel right for you and your family. If you feel comfortable to get back to normal life – then do so. Life is full of risks and getting sick is just an unfortunate part of those risks. Your choice is valid there. And if you choose to still take precautions, wear your masks, get your shots – look your choice is still JUST as valid.

We are all still just trying to navigate life in our own way after a few rather hellish years.

Be patient with yourself, and everyone else.

❤