Another Experience for Campfire Stories

If menstruation gives you the jeeblies, this is your single warning that this post may be TMI for you. There may be details.

pain-scale-chart

Everytime I’m told to rate my pain on a scale of 1-10 I’m torn. I’m told to rate pain with “10 being your worst”. I was curious about this, so I’ve asked around to other people to see what their “10” rated at.

My husband’s was a bad bruise. Which, fair, can definitely hurt! I’ve had some nasty ones. Many others said stubbing their toes, charlie horses, breaking a bone. A few said labour pains.

It’s not a game of “who has it worse” – it’s trying to figure out what’s normal. So when I feel a bad pain, should I rate it according to my worst?

The worst of my worst have been two experiences, until recently. The first was an infected tooth. There was a cavity that opened up to the nerve, and I could feel every breath, bite, drink and temperature change like a hot needle searing my eye. The pain radiated throughout my jaw, into my ears and eyes. The percocet and demerol I was given until I could get into an appointment didn’t touch the pain – but it made me not care about it. If that wasn’t bad enough, the infection meant that the local anaesthetic didn’t work, so I could feel the drill. It was agony, but there were limited options. I survived.

The next was after I broke my leg, but before the repair surgery. The break itself put my body into shock before I could feel the pain. However, after I had my senses about me again I tried to move, and that tiny action sent ripples of heat everywhere and turned my vision white. The bone had shattered, and the pain from those shards rubbing was as bad as the infected tooth. So every time my knee even shifted was a full-body solar eruption. The morphine made me loopy – but it did nothing to relieve the pain. Just take my focus off of it.

Some people’s 10s would be more of a 4 for me, or maybe a 6 at most. So I’ve learned to ignore my 10s when given this scale of reference. My 10s I’ll rate as 20 so that when I go in and they ask, they know it’s not a small deal anymore. Otherwise, my 6 isn’t viewed nearly as bad of a pain as most people would experience.

Funny, how scales change with different experiences.

People think it’s odd when I don’t know my pain, but how could I possibly know what’s “normal” compared to anyone else? I remember when I went in to see my doctor about bad period pain, and I was told it was normal and to take Midol. I never did, because it didn’t help. So I just lived with it since about 2004, because I figured that’s what all women experienced. It has sucked, and I’ve always wondered how more people didn’t complain more about it, yet they’d complain about such other little pains. I never quite understood that.

The internet has really evolved into a thing where you can find out more and more, and it really wasn’t until this year that I found out that the pain I experience every day is NOT normal, nor is my menstruation. Apparently it’s not normal to have to change a heavy night time pad or tampon every 30 minutes or risk spilling over. Who knew?

I didn’t – because those who I did ask all told me it was normal, so I stopped asking, and didn’t really think more of it until this year. I will always remember my first gyne literally rolling his eyes at me when I mentioned I have a high pain tolerance. It makes me wonder what he has felt that’s comparable.

I have asked a few people what labour pains feel like, since it’s not something I’ve experienced. I’ve been told it’s about 5x worse than menstrual pains, but I was actually trying to figure out what “normal” menstruation pains feel like by asking.

Image result for uterus cartoonWhooo boy, when I finally found out I was actually mad. The mild, annoying but ignorable cramp and pull in the gut that was described to me isn’t at all what I feel. What I feel is more burning and tearing, like someone is slicing my uterus with razor blades, which makes me stop what I’m doing in order for me to catch my breath until that wave passes over. I also feel like I have an infected appendix, every single time. I’ve nearly gone in so many times because I was worried my appendix was going to burst, but it would last for a day and then fade again. Oh, and that’s just PMSing (not to mention the hormonal fluxes at this time, as well). It doesn’t stop during menses, so ontop of the ripping and burning, there’s more of an internal scrape which causes a constant trickle and clumpy discharge onto oversized pads, which leaves me exhausted and adequately spent by the end of my moon cycle which takes nearly a week to recover from. But apparently this was normal, so I’ve been putting up with it for what I now know is far too long.

This has been slowly getting worse over the years, and this year it’s the worst it’s ever been. I’ve been dreading every month, knowing what’s coming, and it’s had me curled up on the couch hopped up on pain meds and heat packs that barely help. “Exercise” people say… not realizing that exercise has actually made it so much worse. “Push through it” they say, not realizing that it feels like I’m going to internally combust. It’s an easy thing to say when you see someone up and walking around, but we can’t always know what’s going on inside.

I didn’t. Finding Hurty Gerty the ovarian cyst in July explained so much.

A couple of weeks ago I was in Edmonton for appointments, and when I was done I did my normal routine of hitting up Southgate for a book for me, chocolate for my hunny that houses me during my city visits, and LEGO for the husband. It’s become a fun routine. There was alot more wandering around than my normal day to day, and by the time I got to N’s I was hurting pretty badly. First thing I did was unzip my jeans (we’ve known each other for a LONG time – pants are not necessary around each other). I massaged Gerty, and BOOM – she moved from sticking out of my hip in a fast action-packed acrobatic salutation into a solar-radiant heat charged ball of electromagnetic energy that pulled all the forks in existence into my abdomen. It lasted about 10 seconds of excruciating kill-me-now agony, and then subsided into  a low burning pull as long as I stretched out on the couch. And didn’t move. At all.

The next day it didn’t change, so I decided to head to emerg and get it checked. It was definitely not comfortable. Before I went in, however, I received my phone call that I’d been given a surgery date of October 11th. I was ecstatic! That’s so much better than having to wait for 8 months. But…. there was this thing happening in me that I needed to take care of.

The waiting room chairs are not comfortable, and without being able to stretch out, the pain got worse. And worse. And eventually it turned into pretty much the same feeling as my tooth pain, except radiating from my groin. Every breath hurt. Every movement. And I would have been happy to die right there in order to get away from it. Eventually they got me a bed and morphine, right before I laid my bad on the floor and used it as a pillow, and I ended up staying for a night of morphine and waiting.

Everyone was so good to me, and nice. I think I was in shock when I first got in, as I was freezing and couldn’t stop shaking. It was cold, but not so cold I should have been shaking that hard.

After a long night, more tests and alot of morphine, they discharged me with pain management until my surgery date. I was devastated. This thing needs to come out. I was mad, too…..

But…. I get it. Emergency surgery is for life or death situations. I wasn’t dying. I COULD have been, since my ovary twisted, but not enough to completely block off all blood flow to it. It sucked, and it still does – but I’m far from dying. The ultrasound showed that my dermoid cyst great from 4.7cm to 5.cm – a 3 mm change from July. This may not seem like alot to worry about, however dermoid cysts are typically known to only grow 1.8mm per YEAR – we have some concerns, for sure. Ones that can wait. We’ll find out soon enough, I’m sure.

So I’m now home, resting as much as possible to avoid full ovarian torsion again and high on drugs, more drugs, ontop of even more drugs. For someone who tries to avoid drugs so much, I certainly am not succeeding. But desperation wears a person down, and that is what I am.

I was initially scheduled for a right oophorectomy and endometrial ablation, but after reading up on it, I quickly decided that the ablation was definitely not for me. I expected to have a harder time convincing my gynecologist to give me a full hysterectomy, but after explaining my reasoning he actually quickly agreed. I couldn’t have been more relieved. So in two weeks, hopefully I’ll be waking up a few organs lighter, and never having to dread my monthly shark week ever again. We’re hoping that the POTS and MCAS symptoms will also be alleviated, but chances are that will still be a thing we’ll have to deal with later. It’s a nice thought, at least, but at least there won’t be interference from hormonal imbalances, and it’s possible that my endometriosis is dealt with at the same time if it’s isolated to my uterus. I can hope.

Spirits are high that the end of this part, at the very least, is nearly over.

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Labs, tests, results, and hope

Just like the title says, more things all happened. More blood was taken. More strange looks at my spacey gaze and glazed eyes. Questions about why I was having certain tests done at such a young age. Comments on how good I look so I must feel at least ok. And then more normal lab results.

Ambulatory blood pressure monitoring is a medieval torture method used on those individuals who are bewitched and have no outward signs of illness, in order to exorcise the devil out of them. The cuff inflates so much it cuts off all circulation to the hand and turns the hand a sickly blackish purple color, making the veins bulge like a stressed out neurotic chihuahua’s eyes on a hot day without water. And just when you think your arm is about to fall off from lack of blood, oxygen or general feeling, the cuff releases, sending a surge of blood flowing so strongly that your tingly fingers burn with renewed circulation. It’s like bringing a dying person filled with 23 bullets back to  consciousness – they go from sweet, blissful nothingness to searing pain and agony. This is what the arm is thinking, and it’s cursing you with everything it can. This series of events occurs every 15 minutes for nearly 24 hours, so if you had hoped to sleep that night, the joke’s on you. Even the strongest pot won’t keep you knocked out. (Trust me. I tried.) And then, on little to no sleep, you have to make your way back to the facility that’s an hour away in order to return said torture device so they can tell you that there’s no sign of hypertension.

But you already knew that, because you weren’t being sent for hypertension, but for hypotension, which won’t show up because the activity of the day and the stress from the cuff and lack of sleep increased your stress and blood pressure enough that it landed in the perfectly healthy range and is not at all representative of a normal, uneventful day at home where your blood pressure has dipped to the mid 70’s.

But, thankfully, there was a hint of excess night-time blood pressure dipping, which IS normal for me. Not that it’s normal – but that’s what mine does. It seems minor, but perhaps there’s a hint there.

Otherwise, blood work and echo and ECG all came back normal, just like everything else.

Interesting enough, though, I received my report from BestDoctors.

What’s that, you ask? That’s a good question. I wondered that, too. I couldn’t find much out about them, but I noticed it was something provided by my husband’s benefits plan, so I had decided to check it out. When things started happening in April and after my head CT, I had messaged them just to get more info. Before I knew it, I was going through all of my medical history and issues, which were many and complicated, and the voice on the other end began to turn surly and continuously asked if these symptoms were all related.

Well, of course they are. They’re all happening in my body, and all the systems in the body are connected. There’s very little you can remove or have break down and have absolutely no consequences for that which requires compromises or treatment to accommodate the missing pieces. Try running an engine without the spark plugs, or filter, or anything else. All the pieces are there for a reason, and without one part, something else will breakdown eventually.

I remember he asked me to just focus on one system, so we focused on digestive issues. When I mentioned that I have endometriosis, he responded that that’s not a GI issue. I had to explain to him that endometriosis could grow on different organs, or even just inflame and affect different organs, so I didn’t understand why I would leave it out. He said it was impossible for that to happen because endometriosis was the inside of the uterus that shed each month.

No, dear. That’s the endometrium. There’s a difference. Is there someone else I can talk to?

No?

Pity.

There were red flags right from the start, from difficulty with messages, with misunderstanding what I said, writing different terms down than what I offered which did not apply to my case…. I wasn’t so sure about these guys. But figured it’s provided with the benefits package, it’s free, what harm could there be?

After months of waiting, and not being able to get through to the rep that was dealing with my case, I finally called the main number to inquire into the status of my report. It took another week, but after 5 months of waiting, I finally got it.

And wasn’t impressed.

It seems they decided to agree with the neurologist who read my CT and told me that I was depressed with symptomatic disorder, with a potential for an autonomic disorder, but with high doubts.

Nope. So much nope. My first knee-jerk involved unkindly comments directed towards the physicians who offered the diagnosis, followed by instant self doubt and questions directed at myself. This was the second diagnosis like this – what if they’re right?

And then I remembered how many physicians told me that my knee was fine, or that there was nothing else wrong with me except that I was obese, or the gyne that sent me away with “normal” menstruation pain that was excruciating, and I’ve been living with for so long because I thought that’s what women everywhere were doing.

Gaslighting happens so often in doctor’s offices, and if you look into your regions health care associations you’ll be able to find a physician’s code of ethics they are sworn to uphold. In there is usually a statement regarding patient care and putting bias aside in order to provide the patient with the care needed, and that the patient is to treated according to the symptoms they describe and not what the physician believes.

There are many, many physicians who do not provide care according to the code of ethics they have sworn to, and I strongly feel that the ones providing the service at BestDoctors are some of the same caliber.

I didn’t really know how BestDoctors worked, but after chatting with some people about my results who also have this service, they had very similar results from this company, as well. They were given an easily dismissed diagnosis with no treatment, except perhaps psychiatry, and left the patient to decide who to believe and what path to follow. One lady ended up going into heart failure the following week after she received her BestDoctors report, another suffered anaphylaxis despite her report stating she was not having allergic reactions, and another yet was diagnosed the same as I was when she ended up being diagnosed by her personal team with MS, POTS and a number of other illnesses with comorbidities.

How did this happen? How is their judgement so way out to lunch?

One of the biggest red flags could be a part of it – right at the beginning, when they only wanted to focus on one system. This is a mistake in so many ways, because when one system is struggling the others are working harder to accommodate for that failing system. They’re all affected. So how can you know where the base of the problem is if you only look at one body system?

Another red flag is that this service is paid for by the insurance companies.

What do insurance companies hate the most? They hate actually paying out claims, and want to keep as much for themselves as they can. That’s what the insurance business is all about, so it’s to be expected.

By minimizing a patient’s symptoms, they minimize what a patient needs, including medications and equipment for their treatments. In this way, the insurance company can also minimize payouts to those patients. They patients feel they have been heard, and the insurance company has less to pay out for.

It’s an insurance scam, in my opinion, and I totally fell right into their hands. I felt really dumb for it after, too. But – one bonus is that I can see most of the recent lab and test results myself, which I’ve been able to track down some clues that I’m not sure my physicians have picked up. Not that I blame them for that! They are tiny, tiny clues, but ones that I can acknowledge because it’s what I’m living. Yes, a high RBC count COULD indicate that I’m dehydrated… but what if I’m drinking 3-4 litres of water, plus electrolytes and other fluids, and have a low urea result? Low urea could be a sign of overhydration, among other things.

But, what if I’m NOT dehydrated? Perhaps that’s a sign of something? Like mast cell production? Which ties in with endometriosis, as well? What if that’s the connection that’s being missed because it’s such a small discrepancy that it doesn’t seem worth exploring?

I like puzzles and clues, and this was the reason I went into health care to begin with. I love researching and digging into the physiology of body systems and connectivity. The body is really super neat, and science has come a long way to keep people living longer – but I think every so often people forget to look outside of the textbook and to connect the dots that may waver a little bit from the norm.

The actual, real, face to face care team I have has been working hard to help, and we seem to be narrowing things down. Currently, there’s a “soft” diagnosis of POTS (Postural orthostatic tachycardia syndrome – essentially, the heart rate increases excessively on standing and can cause a multitude of issues).

I joined a POTS group to learn more about it, and everything fit well. There was a question burning in me, because it’s weird and I’ve never really been able to describe it. So I asked:

“Does anyone get dizzy by just looking up?

Or just looking around a white room, like a doctor’s office?”

Most people I’ve told about this have looked at me like I have two heads, so I kept it simple and wanted to see what people said.

My entire chaos had suddenly been met with validation, and I cannot portray how much relief I felt in seeing the responses, some of which were able to describe exactly how I feel. “Dizzy” is a term I use loosely for this, because it’s hard to put some sensations in to words. But some members found them!

  • The horrid lighting at target and Walmart makes me pass out now. Which is a real shame considering my love for Target 😭
  • Yes. Either dizzy or a real detached type feeling
  • Detached! Omg I get the worst looks when I describe this. I’ve said it’s like I’m not in my body and looking at a computer screen.
  • Sometimes. I hate it. Especially if they have the fluorescence lights
  • YES things move in like slow motion and it feels like it’s not real its hard to explain
  • Yeah!! I used to think I was schizophrenic maybe but after joining this group I feel more reassured lmao
  • Yes. Lighting in stores makes me go fast for the exit often. My doctors know to turn off the lights for me. Everything goes white and then dissociation kicks in and then panic. Was diagnosed with POTS but am going to an endocrinologist and neurologist bc my pupils stay small and pulse, yet my eyes are healthy. Trying to solve this mystery for years, I have Ehlers Danlos Syndrome and this set of symptoms has held me back the most.
  • Yes, it almost makes me feel like I’m going to pass out.
  • YES I get dizzy if I change eye positions quickly like if I turn around fast or if I look from one side of the room to another I get really dizzy. I also can’t look at anything all white because the image starts to warp and I see lights and stuff it’s really hard to explain
  • Yes- this sounds like it! It’s not so bad in the house, but mostly in bright/flourescent light and/or all white rooms. And it’s kind of like there’s a thick black veil over your eyes and everything seems darker, or muted? Like you’ve turned the brightness level down on your phone screen, but with your eyes…. It’s so freaking hard to describe. Lol

There are so, so many people who have the same struggle to describe how they feel, and it’s hard to understand what they mean unless you’ve personally experienced those sensations. This makes it (understandably) so hard for physicians to pinpoint causes and to think that patients might be making things up, but what some of them fail to realize is that there are sometimes no good descriptions for what a person is feeling.

I personally look up my symptoms no matter what it is. I don’t tend to visit my care providers unless necessary, because sometimes it’s easy to find out if something is serious or not. I don’t go in for head colds or flus or coughs or anything else – I do what I can to suffer my immune system to do it’s damned job on its own. And it typically works out just fine. I’d never seen another doctor regarding my sun allergy after it was dismissed as contact dermatitis. I’d never gone back for pain in my abdomen after my gyne rolled his eyes at me. I’d never complained about the pain in my hips, because it’s always been a family trait that no one took seriously, so I didn’t either. When these symptoms started appearing, I started trying to find answers and solutions to feel better, and the more symptoms came up, the more I searched. Of course I’m focused on them.

They suck.

The average amount of time to diagnose POTS and similar hidden, chronic illnesses is 5-6 years. Nope. I’m not waiting that long like this. It’s easy for others to say “Oh, just focus on something else” – but unless you’ve been in these shoes, it’s hard to truly understand and appreciate wanting to get better. And sometimes, doctors don’t work fast enough because they truly have no way to know the extent of what a person is living with. I’ve been told that it could potentially take 8 months for surgery for my cyst to be removed, which is growing, painful, and is likely causing the majority of these symptoms to begin with. It’s been five months already, and I’m not really keen on the idea of waiting twice that long to resolve these issues. I don’t understand how these kinds of things aren’t triaged with decent timing.

When real issues aren’t addressed as real issues, they don’t just magically disappear. More and people – especially women – are faced with a similar hesitations to address their medical issues due to being disregarded and not wanting to waste time to be sent away without any answers, like they have been so many times before. Those issues keep building, and the stress with it. This is when self deprecation, depression and anxiety begins to build up as well, because people no longer know what’s normal and what’s not – they aren’t taken seriously, so they stop taking themselves seriously, too. They stop advocating for their own health because they are led to believe that they don’t know any better.

People – it’s your body. YOU know what you’re feeling. YOU know when you don’t feel right. And after falling victim to gaslighting in medical offices for so long, I’m done with that. I’m also done with feeling miserable, and am really looking forward to the day that I can do more without suffering so badly from it. It’s on the way. In the meantime, I’ll just keep on keeping on!

Namaste!

 

Awkward Conversations

“Krys! Oh my god, you look SO GREAT!” she said, gesturing down my body with her hands and eyes. It stung, but she had no idea.

I get it. A couple of years ago, I was over 220 pounds on my little 5’3″ frame. I hid my lumpy shape under hoodies and oversized t-shirts. I lived with the shame my grandparents’ words implanted in me from a young age. “No one wants to see a fat woman. It’s not so bad for guys, because they can get away with it more. But people really want to look at pretty women, so that’s what all women should strive to be no matter how much they have to change to achieve that attraction. Walk with a broom under the arms, walk daintily in heels, spend the extra time to trim the frizzy hair so it doesn’t show, eat less even if you’re hungry, cover your face entirely with makeup because it’s naturally too red. Don’t show your real face to the world, because the world won’t love it the way it is.”

That shit stays with you for a long time, especially when drilled into you when young, and even when other people try to minimize the impact of it – it doesn’t change the fact that my emotional well being wasn’t based on anything healthy growing up. It’s what I knew, and trying to change that takes work. That path had deep treads, and finding a new route doesn’t come with a map. It’s work (but it’s worth it).

It took a long, long time to break away from those limiting beliefs, but I did. Mostly….. there are still smoke tendrils trailing behind me. But I still didn’t feel good about my body or health, and my self esteem was suffering as much as my health. So I started to focus on my health, and that’s a story that’s recently been underway. I worked hard, reduced the pain I was having as well as my pant size and was feeling so great and healthy. My yoga practice progressed a long way and I was feeling fit, confident and energized. Until, one day, not so much. All of the energy I had been enjoying was suddenly in a negative and I’ll never forget that day when I realized that something was very, very wrong, and it has progressed downward from there.

“What’s your secret? Are you doing the keto diet?”

The questions seem to be harmless, but I can’t help but feel like people are not really paying attention to the bigger picture.

I hear how great I look frequently from people I see, and on Instagram and Facebook like it’s something to celebrate and something I should be proud of, but this time I’m not really happy about it. This time, my weight loss is from being too scared to eat anything for fear of razor blades tearing up my belly, or exiting too quickly to be of any benefit. It’s from the loss of muscle mass from watching Netflix and as many golden buzzers from Britain’s Got Talent as I’ve got the happy tears to share in those people’s moments (trust me – they are unending). It’s from eating from a limited selection of food that doesn’t make me feel like having a night out in my bathroom.

I have become anorexic. (Not to be confused with anorexia nervosa, keep in mind. It’s definitely not voluntary. I love food, but it’s not a thing I can enjoy like before without horrible consequences.) It started during my final week of yoga teacher training in June and has progressed to the point that I’m struggling to keep anything in my system long enough to absorb nutrients.

That was a hard lump to swallow and to admit. For someone who loves food, this isn’t easy or fun, and it’s an adjustment that I’m not used to. Hopefully I don’t have to get used to it  for long. I’m looking forward to enjoying meals again.

I’m fitting into smaller clothes. My ribs and hips are starting to make an appearance. My cyst can be visibly seen in my abdomen when it feels like looking out from it’s nest in my hip. My hands have become skeletal. My skin is becoming parched and papery. My hair is becoming dull and is breaking easily, and there are days that I have twice as much hair fall out than usual. Yes, I still have bulk, especially in my lower extremities, but it’s soft and disappearing more quickly than I’d like in a way that I don’t want it to.

My eyes …. the thing I’ve always loved most about my physical appearance… they’re tired. I remember wearing red eyeliner under the thick black raccoon shadows in order to create a bit of a darker, creepy look during my high school goth days, and now I don’t need makeup to recreate that. It’s just part of the look, now.

Hm. Maybe I have a career lined up?

Ha. No. Kidding.

But damn, I’d save alot of money on eyeliner!

What’s my secret?

It lies in hiding the shaking in my legs when I’ve been standing too long. In making it to the closest place to sit down before my vision goes completely black. Or, at the very least, a wall to lean against while my vision returns. The secret is in keeping my hands warm enough that I can grasp a pen without my hand seizing. It’s finding a position where I’m in a little bit less pain (which doesn’t go away) so I can concentrate better on whatever it is I’m doing. Sometimes it’s getting comfortable enough so that I can just do nothing, because moving hurts and motion creates waves of nausea. It’s going downstairs to do something and forgetting – over and over and over again until I actually get it done or forget about it entirely. It’s asking for help when I can’t keep up. It’s in dressing up a little to pull attention away from the rest of me. It’s learning how to breath in a way that doesn’t cause my heart to race and my vision to blur, despite the intense breath work learned during yoga teacher training that I can’t use right now. It’s in keeping things short and sweet. It’s learning to listen really closely past the constant screaming in my ears that spikes frequently and drowns out sound for a moment. It’s in speaking more slowly to give me time to find the vocabulary that slips away like a dream after waking. It’s in pulling my shoulders back long enough to look strong, when the truth is I’m ready to collapse. It’s in learning to say “not right now” to things I really want to do.  It’s in letting my fear over my situation rage on occasion so that it can rest again later. It’s in drawing boundaries and letting people know when I’m overwhelmed. Which is often.

Maybe the secret isn’t much of a secret at all. The “secret” is letting people see what they want , and in letting them say what they do without correcting them. Because does it really matter? I feel terrible, and I believe it’s easy to see… but maybe it’s not? Maybe it’s easy for me to assume that simply because of the way I feel. But that’s not what people want to see, or draw attention to. Is there’s really a harm to them or to me in simply accepting that compliment?

Correct me if I’m wrong, but I really don’t believe there’s any harm in it. Perhaps even more harm to us both if I draw attention to it and make things more awkward than they already are.

Perhaps my physical degradation actually does look good to them. Or maybe they only see that one detail because it’s the most obvious. Or perhaps they do see what’s going on and just want to make me feel better.

It doesn’t make me feel better, really. It kind of brings my attention back to how I feel, which is a constant anyways. But what does matter is that they are there, and they care. And THAT is what makes me feel better. And THAT is what I choose to take out of it after an initial knee-jerk reaction in my head that screams “WHAT?!”

 

I choose love and gratitude. Always.

 

 

New News is Good News!

There’s been no action  from my GP because he admitted that my case was beyond his skill and he wanted someone better trained in internal medicine to look at my case. It’s been a waiting game where everything has been getting worse. But I get it – it’s hard to treat something without knowing what it is, and the side effects of medications may cause even more complications. It feels like a slow progression, but unfortunately it really isn’t.

January I felt amazing. My knee finally improved drastically and I was running again, and I felt like nothing could stop me. The incident with the bird on February landed me on my ass, and I recovered – but not 100%. There has been a steady progression downward since then. About the only thing that has shown any signs of improvement is my digestion, because smaller meals and limited options have made it feel a bit better to process.

The long wait finally ended. I even got all dressed up in a fun little boho outfit, just to go out to see the doctor. I’ve been living in yoga and pyjama pants for so long, sometimes it’s just nice to girl it up. If I’m gonna feel terrible, I may as well look good!

Healthcare-Waiting-Room-Cartoon.jpg

I was worried it would be a repeat of previous physician visits, and I felt nervous going into it. I really didn’t want to hear someone telling me that losing weight would solve all my problems. I’ve lost over 50 lbs with regular exercise and eating well – that should be enough to prove that I’ve been working on being healthy.

I was worried, but I went in with an open mind.

The internist was great. He introduced himself and shook our hands. He was thorough, asked questions, let me talk and offer full answers without interrupting, and went through my medical history in detail with us. He felt the tight abdominal area, located the abdominal pain, thought out loud and did a few different assessments. Most symptoms have been invisible and unseen, which makes it difficult for anyone to take seriously. Even me, sometimes, truth be told. Except since it’s been constant, it’s harder for me not to believe. And now, it’s started to show visible signs. He took my blood pressure. Couldn’t find it. Tried a few times and noted that it was low. Normally in the clinic my blood pressure runs higher than normal, which still isn’t high, but this time it came in true. Thank you, white coat syndrome, for trying to make me seem like a lunatic. I was so grateful for that moment. And as uncomfortable as it was, I was grateful for the next moment when he asked me to stand while he took my blood pressure and it dropped lower. And then again when he had me breath deeply while listening to my heart, which gave him an irregular beat and caused my face to flush and my vision to darken.

But he witnessed it. This simple incident made such a huge world of difference, and seeing the looks on the physician and my husband’s faces as they watched my face flush red and he listened to my heart rate quicken.

So more bloodwork this week, an ambulatory blood pressure monitor and an echocardiogram, and I wait for a holter monitor test in October, unless there’s a cancellation to get in sooner.

Also, the clinic managed to get my gynecologist appointment moved from September 27th to this Monday. Gertrude the dermoid ovarian cyst showed 4.7 cm on ultrasound with calcification, and she likes to snuggle in my hip bone. I’ve asked her to leave, but apparently she’s too comfortable. It’s time to get more physical.

So things are about to happen – hopefully in the right direction. The dizziness and fatigue are considerably worse, and it’s easier to stay in bed most of the time so I can relax. I’ve tried to keep active and productive, but I feel like I’m losing that battle.

All I want to do is sleep, and sometimes I do. I honestly don’t know what’s best for me at this point… so I’m just listening, and doing everything I can to limp through the time between appointments.

Soon. Things are about to change.

No News Isn’t Always Good News

Sometimes, no news is just no news.

In this case, that’s about right. Things have been progressing in a direction I don’t like. I wouldn’t really call this news – it just is.

It is also extraordinarily frustrating. Ontop of the weakness and discomfort I was already feeling, there are now more (most) foods that my body has decided it doesn’t want me to have, and my reactions are getting stronger. More rashing, flushing, dizziness, ear ringing, ear popping, nausea, bowel irregularities. Eating is no longer a comfort. Quite the opposite. Eating is painful and exacerbating. Stress is normally the time of Ben and Jerry’s trials, but now I’d rather just have water. Water doesn’t hurt, and doesn’t cause my entire abdomen to feel like it’s about to violently combust. What used to be safe foods aren’t anymore, and the horrible nutrition I’ve been getting from not being able to eat much is causing even more issues. (Please, no, I don’t want anymore suggestions. If one more person tells me to just eat a clean, vegan diet I will send them the results of that in a Chinese take-out box. It’s been tried.)

In this case, no news is the result of exhaustion so fierce that self care sometimes means having a day in bed. Self care, in a way, sometimes means no care. Just being. Finding space, and filling it with love.

Some days, self care means allowing the anger to rage, the fire to burn and the thoughts to scramble. On those days, self care is allowing what is to be.

I’m not always having good days. I’m not always positive. I’m not always able to smile. “Good days” are not days that I’m feeling better. Good days are simply not being filled with doom and gloom and fear. There is not a day that I have felt physically well since mid-May.

I’ve had all kinds of great advice, but the advice wears thin after awhile. There’s only so much patience anyone has for constant pain, dizziness, ear ringing, nausea, weakness. There’s only so many positive thoughts you can hold before you drop them all and fill with despair. There’s only so many things you can try, only to end up feeling worse and not wanting to do anything without the advice of the specialist you’ve been waiting to see, because all other suggestions have either failed or made things worse.

It’s ok. I’m ok. I’m not despairing, today. Today I feel like I’ve still got fight in me. Today I feel loved and grateful. Today I know that people have my back and I can reach out to them for help, and they’d be happy to step up where I need it. Today is one day closer to getting better – even if that means that I’ll still get worse, first.

Today is ok.

Tomorrow might be. Maybe it won’t. But that’s tomorrow’s problem, and I’ll deal with it then.

Tomorrow I see the Internist I’ve been waiting for. And, maybe, he’ll have some answers. Or maybe not. But at least this part of the waiting is over. Wish me luck.

 

 

Letter to the universe

Dear Universe,

I haven’t exactly asked for anything specific lately, or reached out looking for help. I didn’t think I needed to, and I’ve just taken each moment as they come. But you seemed to know what I needed more than I did, as usual, and you provided that to me. I paid attention this time.

Mostly, I’ve been ok. I’m been taking every day as it is, listening to what my body needs and wants and doing my best to just get through each day with a smile and a little bit of progress. I’ve been paying close attention to what’s happening around me, and living in the moment in every way. Mostly, things have been ok.

But there have been moments during some days that I’m not ok. Moments that I just want to cry and collapse and not get up again. Some moments that I DON’T get up again. There are moments that I am angry, frustrated and impatient. These kinds of moments, I’m really not ok.

And every time I’m not ok, something happens that brings me back to being ok. One day, you brought me rain – much needed relief from the heat that was causing a flare of symptoms. Another day, you gave me cucumbers in my garden. Some of those moments are ones that I am able to remind myself that I’m ok, and am able to pull myself back up. And there have been moments that I’ve just allowed everything to be just as it is, in the messy way it needs to be, with the gentle reminder that it’s ok to not be ok. And some of those moments I just need to not be ok….

Today, you brought me people I didn’t know I sorely needed to talk to.

Someone wise and loving advised me to trust the process.

How could I? I have been let down by people so many times before, and I have found it’s so much better to just do things myself. If I’m in control of my life, then I’m the one responsible for what happens.

But what happens when I don’t have control? What then?

Sometimes there are things we can’t control, situations we would never wish for and answers to questions we never asked. The reality is that no one has control, despite wanting to so badly.

Trusting the process involves letting go. Allowing things to be what they are. It is a vulnerability – one of those things I’ve never been good at. For me, it was the realization that the more control I tried to have of my life, the easier it was to lose control, and the more I try to get it back the more I’d fail.

Trust the process…..

I have an impressive list of complaints that I’m tracking closely for my care teams. These complaints are currently in control. The best thing I’ve learned to do is let those symptoms have control, and to do everything I can to reduce them until treatment starts. It’s the best I can do – and in doing my best for myself, I’m doing everything I need to.

And the more I trust the process, the better the Universe seems to respond.

And I am so grateful, for the people, the events and the lessons that keep coming this way. I feel terrible in body, but light in spirit.

I am vibrant, strong and shiny. I’ll get through this, with new lessons and perspectives I would never be able to know otherwise.

I’m ok right now. Tomorrow might be different – or it may be the same, or even better. That’s something to experience tomorrow, though.

Hari Om.

How to Make Progress

Making sense or progress in the medical industry can be hard.

When I was younger, there was no progress to be made. I was considered too young to have any medical problems, and I just needed to get outside more. (I’m an outside junky, by the way, so hearing that opinion caused emotional whiplash.) My hips have always ached, my back has always been sore, PMS has always been intense and often debilitating. I was diagnosed with endometriosis in 2009 during my tubal ligation, but the gyne wasn’t particularly worried. He said there was nothing to worry about, so I just didn’t. I thought that this was normal and that everyone must experience the same pain on a regular basis, so I did my best to just cope. All of the aches and pains intensified after my knee break – something I blamed my leg for. After knee dropping PMS pain without menstruating for several months, I went back to my gyne to tell him something was wrong. He actually rolled his eyes at me and brushed me off, telling me it was nothing, and prescribing a medication that didn’t actually address the symptoms I came to him with and that was likely to cause depression – something I was just pulling out of. I went to see my GP to explain the same concerns, as well as bring up the concern of my gyne brushing me off, and I was met with the same response. I didn’t fill the prescription.

I also didn’t see another doctor for several years after that, since they couldn’t seem to be able to help me anyways. During this time my pain worsened, I gained alot of weight, and I became desperate. After my previous experience with the last doctors, though, I was scared of being brushed off again. I saw the occasional walk in doctor who prescribed pain medications, but they didn’t work well enough to make a difference.

When the pain became debilitating, and the fistfulls of OTC pain relief medication weren’t working anymore, I just couldn’t do it anymore. That’s when I finally started trying to find a new family doctor and tried Alberta Health Services for a cannabis prescription. (That’s a story you’ll find here.)

The new doctor I found was amazing, and my heart sank when I found out she was leaving so quickly. The clinic assured me they had found an amazing doctor to take her place, but I was skeptic. But I gave him a chance. And I’m glad that I did.

The issues I started seeing him for were minor. They didn’t have much history of mine, so when I went to him one day and told him something was wrong, he was skeptical when I brought up the possibility of Lupus. I couldn’t blame him. He had been seeing me for under a year, I was always healthy, and suddenly I think I have Lupus? Yep. That did sound absurd. I don’t blame him for that. He ran some basic bloodwork to start, and in the time between appointments I sat down and wrong him a letter. Time is limited in the appointments, so I knew I couldn’t get everything that I needed to out. In my letter I detailed my fear and anxiety of physicians, the reasons I didn’t see him about old, common complaints, and the various signs and symptoms I’ve struggled with that were never addressed – most of which I still struggle with, and I made test requests after doing some reading on my own. It was alot. I worried he wouldn’t take it seriously, or that he would be offended at my own requests. I’m not a doctor, afterall – what would I know and maybe I’m just another Google doctor?

And he read it all, while I was there. He asked me questions, and he ordered a buttload more tests. He refers back to it regularly while he deliberates my case and consults with other professionals.

This was my key. This is what I had needed to do, and this was the physician I needed to find. He’s caring, sincere and is working WITH me to try to find out what’s going on. He didn’t roll his eyes, and he’s communicating all steps with me. I wouldn’t have found him if I refused to see a physician for so long. So whatever happened before, it just doesn’t matter. This is where I need to be now.

I used to be angry at the medical system. I felt let down. And now – I’m ok. The medical system is run by people, who make mistakes, which can create more mistakes and loopholes and holes in the system where you can get lost way too easily. It’s a human thing, and it happens. I need to be able to do my part in taking care of myself.

The best thing I ever could have done for myself was to look into things on my own, with an open mind and avenues to look at without convincing myself of something we can’t know yet. There have been days I’ve been scared. Hell, I’m STILL scared. Sometimes unknowns are exciting and adventurous – but some are scary. This is one of those times that the adventure is more scary than exciting.

Progress is being made, though. It does take time, sometimes, and it’s important to remember that. I took control of my own health, and I have learned to FIRE my doctor if I’m not happy with the one I have. There are others – and some will be more well suited to my case than others. Some doctors don’t fit well with me – and that’s ok. It doesn’t mean they won’t do better for someone else.

One of my teachers advised me to trust the system. Maybe not the medical system, per se, but the system overall. Things will happen, and I’ll adjust as I need to. And I’m excited to have more exciting unknowns again!