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!

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One tiny step forward, maybe?

Finally, a routine is starting to come together. It’s not a strict regimen by any means, but it seems to be working. I feel like I’m getting things done that have been sorely neglected. Studying and reading is so much harder than ever, because the words feel like they’re just floating loosely in my head instead of finding something to grab onto to stay there. But it’s happening, a little at a time. I’m mostly sticking with the food restrictions I’ve implemented (mostly – cookies may get in the way occasionally), as well as staying in and listening very closely to my body. If I need to stop, I stop. If I feel like I can get something done, I do it. If something is causing symptoms, I avoid it. I’m trying to avoid napping during the day, but I’m letting myself go to bed when I need to, and wake up when I wake up.  There’s definitely an increase in the amount I’ve been sleeping, but I’m also having better sleep.

Everyday is something new and different, and I think I’m starting to see the trends. Excess sugar seems to make my head go numb and the ringing in my ears gets worse. Possibly yogurt, but that might be the sugar content. Meat seems to generally slow my digestion way down, and if feels like there’s a rock in my system. Chicken doesn’t have nearly the same effect, though. I don’t feel functional until I finish my first bottle of water with mineral supplement, where the brain fog and dizziness seem to get a bit better. If it’s just water the dizziness and brain fog are still extra thick. Some scents cause more dizziness and flushing, especially the Cascade dishwasher samples I got in the mail, and the Hask shampoo I haven’t used in a awhile seemed to trigger it a bit, as well. The sun still causes more dizziness and blacking out almost immediately. So on, so forth. There’s definitely a lot of investigating underway!

I do believe, however, that overall, there’s a tiny, small improvement. I feel a little more functional, and like my head isn’t quite as thick. My stomach isn’t in debilitating pain anymore, as much as “just” constant general heat and discomfort. My energy is about the same, but I’m learning to manage it more efficiently by making lists and creating reminders. My blood pressure seems to be rising back towards the low 90’s more often, instead of low 80’s (I can’t even describe how much salt I eat in a day, plus 5+ litres of different liquids…). I’m working on things around the house, reading books I’ve put off for too long, watching movies, making slow progress on my  clinical aromatherapy and generally learning to function. The people around me are helping me to cope and help fill in the blanks when I lose my words. I’m not out often, but when I do it’s extremely taxing. Keeping the occasional outing short and easy gets me out of the house as much as I need to right now. The sun seems to be the biggest trigger, and even being in the shade outside seems to trigger symptoms. Sadly, I’m missing my favorite part of the year, and missing being outside and foraging for herbs and medicinals to restock my stores. That’s what mail orders are good for, though, even though I love using wildcrafted so much more. Summer will be back next year, and who knows – maybe I can finally have an appreciation for winter that I’ve never been able to have before. Maybe it’s just time for that change.

It’s still too soon to say if these are real improvements, or if I’m just reaching for straws. But I’ll take it anyways.

Healthy habits are starting to come back, with most of my daily self care routine. I’m almost ready to start a light yoga practice again, and some light martial arts basics. I think the mantras are some of the most valuable lessons I took away from my teacher training in this little adventure. If I’m feeling the slightest unsure, unstable or miserable, that is how I’ve found my calm and ground again, and always end up smiling by the time I’m done. I’m sure my neighbours know how they go by now. I’m hoping that even a small regular practice will be enough to keep my body from deteriorating more. I’ve lost quite a bit of muscle mass already from inactivity, which I’m sure hasn’t helped everything, but that can be fixed again. I’ve tried going for short walks, but I find the dizziness and facial flushing to get worse every time. I really don’t know what to think about that. I keep it minimal.

I’m just going to keep up with the new changes, and keep journaling everything until I see the internist I’m being referred to, and hope that appointment comes soon. There’s a lot of conflict on the various treatments for the things that might be going on, and I don’t want to make anything worse by thinking it’s one thing that it’s maybe not. Hello Lupus, good day Mastocytosis, how do you do Lyme – whatever you are, I will find the way to evict your unwelcome presence from my life. Or, at least, set up a barrier to keep you from taking over. Without having a direction, though, it’s hard to know what to do. So, I’m going to do what I do best – and just keep doing! With a smile, to boot.

If I’m gonna feel drunk all of the time, I may as well be a happy drunk instead of a miserable one!

(Did I mention that I started experimenting with my marijuana prescription yesterday? It’s certainly upped the level of interesting in this whole thing. I think yesterday was one of my most productive days! There’s certainly a learning curve going on over here, and I really couldn’t tell you which way it goes…. but as long as there’s something to learn, there’s something to work towards.)

 

Hari Om.

Ready…. set…. waaait for it…..

 

There’s nothing like being ready to start the race and never hear the gun go off.

I had figured that once my yoga teacher training was over, I’d be good to get things done and ready to finish my studio to start teaching in my basement.

It’s definitely a bummer that hasn’t started, and isn’t even a priority at this point.

Instead, I’ve taken another 20 steps backwards. I’m not going to teach until I catch up those final hours I missed and get insurance in place. And I’m not going to catch those up until I feel like my brain isn’t going to melt. Unfortunately, my brain is still melting, so moving forward with those plans isn’t in my stars right at this very moment.

I seem to have some kind of illness or disorder or something malicious and not very nice, which has transformed in a medical perspective from central sensitization disorder to fibromyalgia to Lupus to carcinoid syndrome back to Lupus again. I personally think there is a big possibility of mastocytosis or Lyme disease. But it all boils down to one simple fact:

We don’t know know what’s happening.

I wasn’t going to make this whole affair public, but after reading other journals that have helped me describe and define certain aspects of what I’m feeling, I changed my mind. I decided that if someone comes across these pages who experience something similar, maybe there’s some clue that might help them, once this is all said and done. Or, at the very least, let them know that they’re not alone. In looking for clues and hints as to what’s going on, it was warming to know that what I’m going through has been a journey taken by many others. Warming, but also frustrating – no one should have to feel like this and be told that there’s nothing wrong with them, ever. Thankfully, I haven’t had that said straight out by any of the medical professionals I’ve seen. I seem to have finally found a family doctor who is willing to help build a good team, without pushing unnecessary medications on me. Currently, he’s referring me to an internist. Other specialists he could send me to will typically only focus on the system they specialize in, and disregard the other symptoms that are likely connected. This is how misdiagnoses happen so often, and he seems keen on actually pointing me in the right direction. No medications have been prescribed beyond the pills for vertigo (which didn’t work) – but how can anything be offered, when we don’t know what’s happening and there’s no lab work that indicates a problem? My blood pressure shows normal in the office, but I brought in the monitor we have at home to show him that what’s seen in the office is far from what is seen at home. A BP reading of 94/66 may seem ideal to some people, which is what it came up at the office today, but 78/57 is not, which is what it dropped to now (this is the second time it’s dropped below 80….)

We thought about trying to transfer Dave’s high BP to me, but we figured that might turn into a new episode of Dexter. Some shows should remain finished, so we thought better of that idea.

Anyways, I’m sure it’ll have an end point, at some point. I may as well share my journey while I’m on it, so others can find some solace knowing that they’re not as crazy as others may have them feel. It’s been a few months already since my symptoms began to flare up, and they’ve slowly getting worse since then. Lab results, however, show nothing is wrong.

tumblr_n4zmb9ah9Y1ts8vs8o1_640My energy levels are tanked, as are my activity levels. My digestive processes are completely fubared. My ears are constantly ringing. My face flushes red and hot “randomly” – this is actually triggered by certain things, which we’re just starting to figure out, I think. My blood pressure – which has always bordered on low – is slowly dipping lower every day. I’m dizzy all of the time, in a way that makes me feel like I’m going to pass out. Standing up is not my friend. Being outside with a cool breeze, not even in the sun but under a roof with light simply around me, results in the feeling that I’ve been running a marathon in direct heat all day. Direct sunlight for any amount of time makes me instantly dizzy, overheated and flushed, and I have to remove myself from the sun right away. My brain becomes word soup, in that there’s a word in there that I know but am just not able to fish up, which results in stammering for words, or using the wrong words. And I know it, but can’t think of the right one. I hurt all of the time in the regular sore joints I’ve had for years, but now it’s starting to get worse again because my activity levels are so low. Trying to boost those activity levels results in a demand for a 3 hour nap now – and there’s no fighting it. Sometimes I need a nap anyways, regardless if I just woke up or not. I get hit by exhaustion so bad that I fall asleep talking to people or while busy working on something. When I’m not exhausted, I’m fatigued no matter how much sleep I’ve had. Sleep is sporadic – sometimes 4 hours, sometimes 10. I am forgetting simple tasks, have gotten lost in familiar places a couple of times now, and short term memory is like that of a fish. It’s like wading waste deep in jello shots and being drunk ALL of the time, without the fun.

I might laugh at this more, one day. I do laugh at myself now, too, mind you, but it’s also very frustrating. This isn’t me. Having to ask Dave to drive me to my appointments or to remember things for me is definitely a change of pace and routine. He’s been so good, and so supportive, and I couldn’t ask for a better partner to help me through this. And yes – I’m taking the help where it’s offered, for once. Because I know that I can’t carry myself entirely right now. (I’m happy when I have the energy and coordination to shower, lately, and remember to feed the animals….. nevermind everything else! Those little wins are big enough goals.)

And this, dear reader, is why all the things are on hold right now. Business, schooling, life – I’m learning how to function with dysfunction until I can get back to normal again. Anything business related is on hold, and any outings are pretty much non-existent, because it’s just not worth it to go out. It’s exhausting. And it’s ok – because I’m taking care of myself and figuring things out, little step at a time.

In the mean time….

Everything scented in the house has been boxed up and moved to a friend’s. Soap, essential oils, cleaners, shampoos, you name it. Instead, everything here has been replaced with unscented and hypoallergenic. I’ve also dropped down to a very basic meal plan. Same food, all of the time. Not that I’m allergic to it all – I just don’t know if I am or not, and I’m desperate to find a way to feel better again. We’re pulling out all the possibilities until I can find a baseline again, and then work my way up from there. Everything is focusing on simplifying everything, reducing stress, minimizing work, lowering expectations and just figuring out things day at a time.

The referral for the internist is underway. I have a second opinion underway via Best Doctors. I have a routine I’m still struggling to find from my Ayurvedic practitioner. Perhaps something/someone will come back with a new lead or results. And if not? I’ll try a naturopath, maybe. Or a witch doctor. Voodoo priest? Someone must know how to help. The truth is out there.

 

*Cue Unsolved mysteries theme.*

 

 

One path, all paths or no path?

cornwallsImagine Robert Frost’s poem “The Road Less Travelled”. There’s a path in front of you – nice and clear and safe, and headed exactly to where you are wanting to go. Along it, there are branches off that seem to go in the same direction – some are shortcuts, some are dead ends, some extend the original path but eventually reconnect, some will take you back to the start of the path and others yet will take you to a new destination, or another road with other branches. There’s also a river that runs alongside the path heading in the same direction.

There’s no way to know which branches go where, or how, or if there are obstacles or waterfalls or rocks or wolves.

What do you do?

There are some people who go through high school without a real idea of what they want do next. They have a career path because they have to. That’s what high school is all about, after all – preparing us to be adults. I’m sure it’s every parent’s dream to see their kids grow into successful, strong, independent and upstanding members of society.

I clearly remember the frustration of being that kid who made a goal…. but my heart wasn’t actually in it. I wasn’t ready to make a path or choose a direction at that time. How could I? There is SO much to know and do and experience, and I was just starting to see outside of the world I had grown up in. How can a person reasonably decide what they want to do with such a huge variety to choose from? I wanted to do it all!

Instead, I floundered from job to job trying to figure out what I wanted to do. When I went through my Unit Clerk course something felt right. Something, but not quite everything. I was heading in the right direction at least, but I knew I still wasn’t there. I had taken the course to get into the medical field to decide if nursing was for me. After working at the hospital for a number of years, however, I decided it wasn’t. The environment isn’t mentally healthy and stable, the pressures are high and while patients were getting cared for, no one actually seemed to care about them. The staff seemed to forget that patients are people, and I was constantly being reminded not to care for the people by my superiors.

But I thought that’s what patient care was all about? Wasn’t it?

It apparently wasn’t (and still isn’t). Diseases and conditions are what are being treated at the hospital, and not necessarily prevention. And definitely not the overall well being of a person. If patients had someone that cared and who listened to them and their problems, many of the treatments they received might be able to be reduced by preventing the conditions in the first place. There is an over abundance of information available and it’s so hard to know where to start. No one has time for that, whether they mean to be helping others, or helping themselves. Sometimes some gentle guidance is all that’s needed to take control of one’s life, but finding the right guidance can sometimes lead a person the wrong way.

What I experienced while working at the hospital was heartbreaking. The nurses were overworked, underpaid, often connected with patients better than attending physicians and many lost their compassionate side and any kind of sympathy or empathy. Patients were judged and received care based on those judgements, and yet other nurses were only there for the paycheque and had no compassion to begin with, or resented the position they had or the choices they had made. And those nurses were the ones who excelled – they did their job and moved on. The nurses who didn’t were the ones who cared and wanted to give people more. They were run ragged, hearts were worn and tired and they were in a constant state of frustration at having to fight for those under their care.

And so that idea of nursing was dropped hard. I’m a person who likes to help people in all ways, not just minimal effort to get the job done.

Fast forward to today. I have entered a rabbit hole of health information and have been studying texts and research papers on many topics, and constantly asking “why”. Why does the western world consider itself to have superior medical care but some of the highest rates of illness? Why is nutritional data lacking some of the important information needed for properly informed decisions? The western way of living has become self destructive, and it seems to be a leader in trends. Sure, we have top access and resources for health care and disease treatment – but what about prevention? Where are the resources for that? The fad diets, the “healthy” food trends and advertising campaigns are actually doing us more harm than any of them are doing good – but that’s hard to see unless you take the plunge and ask why. The answers are there – but they’re not answers I’ve been happy at finding.

Why is the recommended daily sugar intake not listed on food packaging?
Why are more and more children being diagnosed with diabetes every day?
Why has the maximum allowed sodium and sugar intake more than doubled over the years?
Why are natural health treatments frowned on by many doctors?
Why can we not get better advice on weight loss from our physicians?

These are all questions I’ve asked, and more. I’ve been more frustrated with our health system lately than never before.

I’ve been finding more and more answers to my questions in the past little while, and I’m not thrilled with the answers I’m finding. This year has been exceptionally enlightening for me, because I’m READY now. I’m ready to know, ready to learn and ready to finally make my move. My path of aromatherapy was one more step into a direction I didn’t know I was heading, and I’m absolutely in love with what I do. I’ve been helping people succeed in their goals and healthy habit forming, and it feels so great to see people happy with their success. This, too me, makes me the most successful person I’ve ever been. And I want more!

I’ve been trying to decide on what to do next. Nutrition and herbalism are two subjects that have been strongly calling to me, as well as yoga, reflexology and acupressure. How to choose?

In several of my courses I’ve taken there have been fragments of Ayurevedic principles and treatments, and they not only fascinated me, but have drawn me in. The concepts of Ayurvedic doshas are amazing – there is a simple mathematical and scientific equation that outlines a person’s health and balance, and while I don’t fully understand how it works yet, I’ve been seeing through my case studies that it DOES work. In doing some self-studies on Ayurvedic principles I finally came across it…..

My direction.elements

My goal.

My life purpose.

Ayurvedic medicine.

Five years ago, this isn’t something I would have considered. I wasn’t ready. It wasn’t the book knowledge, but my mental and emotional state. I needed to grow those, stabilise them, and do some healing of my own. This year has been one of extreme progress. I’m ready now. I know it, and the universe has gently led me in the direction I needed to go in order to prepare myself to dedicate myself to others. (Admittedly, there have been a few cliffs that I was thrown off along the way because of my headstrong persistence to always go the hard way….. I guess it wasn’t always so gentle.)

I’ve found an institution in California that offers online and distant Ayurvedic studies and is highly recommended by past and current students. It is also recognised as the leading Western Ayurvedic training institute by the top Eastern institution. I have to further my current aromatherapy studies before I can consider starting this path, but I’m elated. It feels right, and perfect. And I’m so excited.

I’ll still be continuing doing what I’m doing. My course work will be done via live class, which will allow me the flexibility to continue working from home and seeing clients as needed. There is so much more I will be able to offer, and I hope too combat the need for treatments to begin with. Let’s get to the root of the problem so it doesn’t recur!

Bohemian Alchemist is still carrying on. You’ll find updates online, and will be able to shop at the Painted Door on Main in Beaumont. I can’t wait to share what I learn along this latest journey! Wish me luck!

 

Always in kindness,

Krystal

The information provided is for educational purposes only. It is not intended to test, treat or diagnose health problems or diseases. This information is not meant to be a substitute for the advice provided by your own physician or other medical professional.