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.

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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!

Hints and Clues

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.

10-Things-TO-SAY-Invisible-Illness-revised-400-72dpio-web

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.

things-not-to-say

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.79fec95aff23e22ca6379a6ad4bc602a

 

Blessed be.

The End of Good Things

The end of the year is nearly here, and it’s now that I normally take reflections on the past year to know what I want to do going forward.

But not this time. This time, it’s already been a year of reflecting, and I already know the direction I’m heading in 2018. The goals are solid, achievable and already laid out. It has been an amazing year that I’m happy to bid farewell to, and look forward next year with excitement.

But not without one last, final achievement that I never excepted.

I know I’ve mentioned my knee before – but for those who don’t know the story…. here’s a run down.

(And for those who do know it and just want the big news, scroll down)

In 2009 I badly broke my left knee, requiring surgery and more hardware than a toaster oven and 6 weeks of non-weight bearing before I was able to rest my toe on the ground. I was on crutches for three or four months and wasn’t able to drive. Something wasn’t right with it, though, and there has been constant, debilitating pain ever since. I had the hardware removed in 2010 which helped a little, but there was still something that felt “stuck”. It collapsed randomly, seized daily, hurt always and has been a constant reminder of the active life I used to lead. The pain extended not only physically, but mentally as well, and I’ve experienced many physical and emotional highs and lows.

My doctors would tell me that I was fine and just to lose weight, which was a struggle when any kind of exercise caused more pain, and pain medications weren’t helping. I was stuck, I was frustrated and entirely discouraged. I was waking up every morning crying in agony and not wanting to move – but not moving made everything hurt even more. Because I was favoring one knee, the other knee suffered for it. As well as my hips, my back, my shoulders, and eventually my neck, which led to chronic headaches and occasional migraines. Everything is connected, and everything was trying to tell me that something was wrong.

I couldn’t help but hear my body screaming in pain, but I didn’t know what else to do about it. My family doctors at the time failed me hugely in that regard. I had specifically asked for a referral to an orthopedic specialist but was denied by three separate physicians because in their opinion, I was “fine”. “All” I had to do was lose weight. I tried, but the pain always won. They had no other suggestions or help to offer. No nutritional counselling, no pain reductions recommendations, no referrals to other specialists.

There was no denying that I had gained a lot of weight. The physical and mental burden of that didn’t help, either.

Massage, acupuncture and chiropractic care helped, but the pain has always persisted through everything.

I finally had enough last year. The pain had reached new levels that I just couldn’t tolerate anymore, and it was when I realized that I was taking handfuls of OTC pain meds several times a day that I knew this wasn’t right. No one should bee taking that much pain relieving medication of any kind just to be able to get out of bed in the morning. I was angry at my physicians for have absolutely no suggestions to help me move forward and decided to prove them wrong. It was the determination I needed to make a change.

I started eating better. I started practicing yoga much more. It wasn’t enough, but it was a start. I set my mind on finding a solution. Late last year I visited Natural Health Services and they offered me a prescription. Yes, I have been a daily weed user since then. I’m not ashamed of this – and why would I be? I’m not high everyday, despite what the common belief is. There are options that don’t give any high, and this is what I use most of all. It is because of medical marijuana that I was able to move past the pain and start a regular exercise regime. My spirits lifted, my determination doubled and I started working on the weight I had piled on for the past seven years. There was a learning curve to be sure, but it was the only thing that helped reduce that relentless pain enough for me to move more. I delved into courses regarding nutrition and fitness in order to help me help myself, since no one else seemed willing to point me in the right direction. I bought a Fitbit. I started logging meals, exercise, weight and body measurements. Sure enough, I started losing weight. It was a lot of work to get into new habits and routines, but these habits and routines are simply part of my daily life now.

The pain was still there, though. Reduced, but always present. I ignored it the best I could, accepted it as part of who I was and didn’t allow it be an excuse anymore.

Early in 2017 I had reached out to a new clinic in Leduc, whose post card came to me in the mail. Despite my deep-seated fear that I would be told the same thing (“I was fine, just lose weight”) I went anyways. I knew I needed a GP, but my anxiety towards visiting them had grown ridiculously high. I wasn’t in the appointment for more than five minutes before I was crying from that anxiety. It was embarrassing, but the physician was the kindest I had ever met and understood that I was struggling and was legitimately looking for help. She gave me the referral I was wanting to the Glen Sather Clinic at the University of Alberta.

It took much less time to see a specialist than I had anticipated, and she had looked over my history and x-rays and agreed with the general physicians that everything “looked” fine, but she knew that there’s always more to the story than what can be seen on x-rays. After the assessment, she agreed with me that everything was “not” fine. There was scar tissue and muscle weakness, and she suspected that this was part of what was causing my problems and sent me to the physiotherapy clinic to strengthen and balance those muscles out.

It was relieving to finally get that validation of the problems I had been faced with for so long. There’s not much more discouraging than doctors trying to peg you as a narcotic user and abusing the health care system when you’re trying to reach out for help. The health care system failed me in so many ways. I hoped this was the break I had been looking so hard for, though. (I wasn’t disappointed.)

My life has changed significantly over the last year. I’ve lost 50 pounds (and am still losing), my muscle toning has increased, I eat healthy as a habit instead of going on diets, I still log my daily food and activities. I practice yoga asanas daily and start yoga teacher-training in a few weeks. I am at the gym every weekday for cardio and twice a week for strength training, plus physio every day. My husband and I have taken up martial arts training once a week, which we try to practice at least a few minutes every day. I use CBD oil daily as a preventative, but I find my need for THC for pain relief has greatly reduced. My energy levels are higher than they have ever been. I’m retaining knowledge from my studies better than ever, my productivity and self-esteem have skyrocketed, as well as my confidence in all areas of my life.  I sleep amazingly well, my mood has improved and I can legitimately say that I have never been happier.

And then something happened last week, that has changed my entire world around again.

The Latest Update

After I walk for awhile, or sit or stand for an extended period of time, I normally have to stretch and bend that knee to relax a specific muscle that always feels like needles are digging deeply behind my knee all the way down my calf. That’s been my normal life for the past 8 years. Last week I decided I was going to start some light jogging again. Nothing huge – just a minute a day, and increase by a minute every week. The rest of my cardio was just walking at different speeds and angle increments. After my cardio I’d need to stretch and go on the bike for a few minutes in order to get my knee to bend properly again, since it would seize up.

During one of my yoga poses on Wednesday, something in my knee slid. I can’t describe it any other way. I have done this pose many times, but it was always modified because I have been unable to do the textbook version due to knee limitations. But this time was different. Something gave, and my knee just slid into place where it was supposed to be.

I thought it odd and decided to keep an eye on it without much further thought.

After my cardio at the gym I was doing my normal stretches… except I didn’t need to. The pain wasn’t there. It was just gone. And I cried, and cried some more, because that relief was the most amazing thing that I ever could have felt.

On Friday I wanted to really test this new feeling out. Smart? Maybe not, but I can’t possibly convey how hard it was to not just go running. It felt so good and that’s all I wanted to do. On Friday I kept bumping the speed up more and more until I didn’t think I could run any faster…. and then bumped it up a little more…

I wasn’t just jogging. I was RUNNING. For the first time since I broke my knee, I was running as fast I my legs could pump. And it felt amazing. No pain, no instability, no grinding joints…..

And I pulled a groin muscle in the process. And it was 100% worth it. That muscle is already fine, and I am elated. I can jump. I can bend in ways I couldn’t before. I can do so many more things I wasn’t able to do before, because either my knee just wouldn’t bend enough or it hurt too much to do.

Even if the rest of the year hadn’t already been so amazing, this development would have made it the best year I’ve ever experienced. As it stands, it HAS been an amazing year, and I feel like I’ve won the lottery with this latest gift. If there is anything I ever could have wanted for myself, it would be this – to be pain free. Of course, I didn’t ask for it, because it’s not something anyone could really give me. Nor is it something I ever thought I’d get.

There is still one muscle that gives me pain, and I’m working on that. It’s the lesser of evils, however, and I don’t know that I will ever feel as full of gratitude as I do right now.

I thought my life was already full of amazement, but I was wrong. Something had to give – and it finally did. I have never been in such amazing health before, and that will only improve.

By doing the research and work needed, I was determined not to let myself make excuses anymore. I found every excuse to be successful instead of allow myself to fail. Finding that mindset was hard, and admitting my to my own setbacks and sabotaging was harder…. but worth facing.

I don’t believe there’s any one thing that encouraged this more than any other, but a combination of everything from complementary therapies, strength training, adjustments, mindsets and so much more. This is my shoutout to all of the caregivers that had a hand in making this happen, and I hope I didn’t miss anything or anyone! I am so, so thankful for all of you!

(And don’t worry – I won’t always run so hard that I hurt myself again. I’ll take it easy. I just really wanted to feel what it was like to really RUN again!!)

Vanessa Groshong (Acupuncture)

Amy Phelps (Massage)

Cure MD (Dr Sam O, Dr Lynzie Hawman, and the entire staff)

Pipestone Creek Pain and Health Center (Dr Dave Hewko and entire staff)

Natural Health Services (Dr Ferrari)

Glen Sather Sport Health Center (Dr. Olesia Markevych, Jessie Gill)

All my love, always. Merry Christmas!

 

Krystal