I reached out … now what?

Asking for help has never been easy. It means I owe a debt, and it’s not always a debt I’m sure I’m able to repay, so it’s only when I’m truly desperate that I do what I feel is grovelling to others to request help. If I’m able to repay the favor, then it’s not hard to ask, but without having that balance I struggle with the request.

Experiences can be humbling, can’t they?

I am at what might be my most humble. I’ve had to ask for help before, but not quite like this.

This year has been a struggle, and we’ve kept many details to ourselves. During yoga teacher training I wasn’t able to keep up well with sales so much, as there was so much going on with trying to finish training as well as my aromatherapy certification. There was also a side project underway where a new company became incorporated, and so much effort had been put into getting this endeavour underway. It was ready to go, and we were just waiting for our financing to come through. It would have been so good for us, but that’s when things started to go wrong. That’s when I could no longer make sense of the things happening. That’s when I couldn’t focus on any of the tasks I was working on without making silly mistakes. And that’s when I had to admit that I couldn’t move forward with the company we incorporated, because it was completely a team effort and we were both needed in order to move forward with it.

We cancelled all plans with the incorporation. We still own it for the time being, but nothing has progressed with it. We wanted to wait to see what would happen.

I am short of my yoga teacher training certification by 10 hours because the worst of my symptoms came up during the retreat, where I found out just how much I was affected by the sun and heat. 

I couldn’t finish my aromatherapy certification because of the brain fog, which has made it nearly impossible to not only read, but to retain new information.

I moved my products out of the house in case they were the source of my issues. This makes them difficult to sell.

All of my plans and income sources had to be put on hold because I couldn’t focus on them. Whenever I tried, I made mistakes, or forgot, and I couldn’t stand the idea of disappointing anyone. So that’s when I made the hard decision to temporarily shut down Bohemian Alchemist, with hopes I could pick it up again soon.

But I couldn’t. My inventory was stored offsite, and trying to sell it was difficult to do when I had a hard time managing the inventory. I couldn’t offer services or products out of fear of making a harmful mistake. I was making mistakes, and it was only a matter of time before I made a mistake I’d regret and hurt someone. Thankfully, they were all minor, but they were enough to make me realize that it was time for me to stop. I did the responsible thing by keeping my clients safe, rather than pushing myself further beyond my limits in order to keep everything operational. I was already beyond my limits, which had changed so, so much from the beginning of the year.

Closing was hard. So much harder than I could ever express. I love my business, and I love the products I’ve made, and I loved the direction I was heading with it. But mostly, I loved the connections I made with people. I worked hard to start and maintain it (not without help – I’ve had so much help from so many people!). I found that hanging off of “maybe”, “possibly”, “one day” and “eventually” wore on me so much, and I couldn’t answer people who wanted to know when I was opening again. The encouragement from others was well meaning, but brought my attention continuously to the responsibilities waiting for me. I felt horrible anytime someone wanted a custom order and I had to refuse. I felt inadequate, disappointing and that I was letting people down – but the one that mattered most was my husband. I have not been able to contribute to our income. He has been ever the encouraging, supportive person he always has been, but this is an insecurity of my own that stems from old, deep hurts and experiences that are difficult to keep controlled when I’m at my most vulnerable.

Everything was shut down. I found ways to keep busy and to keep my flare ups moderately controlled. The more controlled my symptoms are, the more productive I am, which is how I’ve been able to reasonably maintain our home. It hasn’t been ideal, but we’ve made it work.

But our expenses added up. Medications and supplements and specific clothes that helped reduce symptoms, fuel to get to and from appointments, window replacement, so on so forth. I’ve listed some of our expenses previously. They continue to add up.

And then our hot water tank decided to die on us right after my surgery. The nerve of it, I dare say.

What do you MEAN money isn’t everything? We are a bank!

And it’s been a struggle since then. 

I hit a low point a couple of weeks ago, which I also shared part of. But not in entirety. I had cabin fever in a bad way, and I was unsure of everything. We had been thinking about getting a service dog to help with certain things in order to get me the support I needed to function better in the day, but I wondered if maybe this was too extreme. 

And so did a few others. A few people have mentioned that they believe I may be bipolar, or that perhaps I need to find God, or meditate more, or to “just relax”. It has been implied that my symptoms are imagined and that I’m a hypochondriac. Perhaps I am just looking for attention.

These comments come from very few, select people, but they hurt, more than they could ever know. I believe they had good intentions, and truly believe the things they say. There were harmful, hurtful words regardless of intent, however. They made me think that, maybe, they weren’t wrong. They made me feel insecure. They made me feel that I was sharing too much about our situation, and that perhaps I should keep it more to myself. I found engagements with people to get less and less, and I wondered if I was believed at all or not.

To be fair, when people see me they see that I’ve lost weight and am rocking a fairly normal body size for the first time in a decade, see me walking and talking  and my clean house and see my rosy red cheeks, unaware that the redness is part of a flare up. What they see seems healthy.

What they don’t see is everything else I’ve previously mentioned. The crippling fatigue, the numb cheeks,  the thick brain fog and confusion, the double vision. I’m functional, but very carefully. They don’t see that. They don’t see the little leg pump I do before I stand up, nor do they realize why I stand up so slowly. They don’t see my balance as that bad. They don’t see me avoiding bending over to avoid passing out. It’s hard to believe, sometimes, if there’s nothing to see.

It’s there, however, if you pay attention.

For the most part people have been kind, caring and supportive. Several have offered help, and have stepped up to help where we need it most. Right now, what we need most is financial. Bad timing, I know. Our bills are paid, the animals are fed, but we’ve been maxed out in all accounts since early fall and we have been just barely getting by. The prospect of catching up hasn’t been promising – which also means no possibility of a service dog. I will not commit to getting an animal that I am not able to afford to care for.

So I  reached out.  I asked for help, as so many people have encouraged if I needed it. And I need it. I presented my case. I made a post on my Facebook page. People asked me, “What can I do to help?”

“Share my page post,” I responded. I don’t expect anyone to buy things they don’t want or need, but sharing my post would help get the word out, and perhaps reach and audience that could help. It costs nothing and is easy to do. But then, I always seemed to follow it up with, “If you can’t, then I understand.”

I don’t understand. I don’t know why I  ever said that. To be nice? To give them permission to ignore it? To make them think that we weren’t in as tight of a situation that we are? Or maybe I’m just an idiot. I really don’t know why I said it that way, but that’s what I do.

When I went to see my psychologist and he asked me how I was, I said, “I’m great! Thanks! How are you?” – which I then had to admit that I lied. When he asked why I said that if I didn’t mean it, I admitted that it’s a trained response after growing up in a place that didn’t admit to weakness. I believe working retail also encouraged said response. Customers don’t want to hear how great you’re not. They’re there to spend money, and that’s all. It’s just what we are trained to respond with in order to maintain courtesy, and I’m trying to retrain that response. It’s not an easy thing to stop doing, especially when my defence mechanisms are locked and loaded at the moment.

Anyways, Some people shared my post.

And some people never responded, and never shared it. I see so many people share things supporting other events and complete strangers, but have not supported me where I need it most. Sometimes with excuses explaining the reason of their lack of support – which I appreciate, since at least I know where they stand. Most often the response was silence, however, and it’s the silence that hurts most of all.

And that hurt contributed to my downward spiral, which also caused worsening symptoms and an emotional meltdown, which made my spiral even worse. I spoke with my internist. I was so tired. Frustrated. I was falling apart. He assured me that he believed there was something happening and that we needed to push through just a little longer to try to find some answers. He brainstormed some ideas, agreeing that I needed a break. He prescribed something to help me sleep – something I do not get nearly enough of – and agreed that a service dog would be beneficial to my case. 

This helped alot. The reassurance from both him and my psychologist made me realize that I was spiralling down the hole of other people’s perceptions and expectations again. They told me that I’ve been holding myself together so much better than many other people might in my situation. I don’t know how true that is or not, but I hung onto it. It’s been a source of strength for me to keep pushing forward.

During one of my appointments, I was asked what I would do if I had all of the power in the world. 

I answered that I’d give it away to someone who would use it well.

Then I was asked what I would do if I had all the agency in the world.

I had to think on it, but eventually I answered that I’d use it to become a better person.

Thinking on this…. I HAVE all the agency in the world. That’s not something anyone can control, change or take away from me – only I have the power to do that.

Which gives me all the power on the world to do what I said I’d do. And that’s not a power I’ll hand over to someone else, regardless of their intentions.

I need to stop giving away my power. It’s the only thing I can truly control when I keep it as my own.

I needed that challenge. And I was able to use that to find my calm once again. And my power to become that thing I want to be.

I let things be. Kept my post up, and just gave it over to the universe. A friend of mine told me, “The universe gives you only that which you can handle.” I responded that the universe has more faith in me than I do, but there was an important point in that, and one that I do agree with, even if I struggled with in that moment.

And then the most amazing thing happened. Or, rather, person, and things seem to be progressing in a way I never though I’d see.

I had asked for help, and held unrealistic expectations of others. It was never about them, however. Those expectations were based on my own disappointment in myself and my situation. Once I let go of that disappointment, as well as the expectations of others, things have changed quickly. People have taken my call out seriously and I have found myself surrounded by more support than I had hoped for. There are still those in my corner that hold silence, which is disappointing, but I hold no grudge towards anyone. No one can possibly know how the situation truly feels, and I hope they are never in a position to fully understand – which would mean being in my situation. There are those that do understand it, because they’ve been through a similar experience already. And I have never held more compassion, empathy and understanding for them than I do now.

It’s hard to accept help. Harder than asking for it, especially after the disapproval of some people. But people find themselves in situations, sometimes, and need a leg up. This time, it’s us. Now that help has been incoming, I find myself wanting to offer things to pay them back – knowing full well that we’re not able to. It’s been difficult to say “yes” to the help offered – but I have been. I’m breaking out of old habits and routines, and finding a new way to be.

And once I’m able, I’ll find way to pay it forward again.

The universe knows my gratitude, my fear, my uncertainty and my feelings of personal failure. And I’m learning to trust it to catch me with grace as I’m falling, so that I can later catch others with that same grace and help them back up.

It feels similar to performing the “Angel Walk” at the end of the YTT training during graduation. I may have been short 10 hours from a signed certificate, but I graduated in so many other ways than I ever could have expected.

I reached out for help. And now, I’m learning to accept it with gratitude, and no expectation.

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Costs of Raising a Service Dog

It’s taken alot to admit that I’m struggling, and it’s been even harder to reach out for help. But here it is.

I’m struggling alot lately, and part of that is from my loss of independence. Also my eyes. Everything is in GIANT text so it’s clear enough to read it. This is a huge blow, since so much of my day consists of reading, both online and off.

I’ve put a callout for fundraising for a service dog so I can get some of that back freedom back, and find some normalcy in life again. There are some who don’t understand why I’m doing what I am and why we need to raise funds. So hence this post, to try to clear a few things up.

We’re focusing on fundraising efforts to help me find some independence again. We’re getting a puppy to train as a certified service dog! We will be a team more than he will be a pet. The dog will be trained to help stabilize my balance, to increase blood flow to my upper body, retrieve water, pick items off the floor, alert to flare ups and other tasks appropriate to my needs. In public, he will be trained to go get help if needed, safely cross the street, stability and more.

I have lost so much of my independence from this unknown illness that continues to cause issues – debilitating dizziness, tinnitus, blurred and double vision, cognitive malfunction, facial flushing, presyncope, instability, improper digestion, and more. Having that team member with me will help me get some of that independence back again. A fully trained service dog can cost upwards of $20,000. This is an intimidating out-of-pocket expense on a single income. The breeder we have decided to purchase a german shepherd puppy from is set to pair her breeding adults in the spring. We have taken many costly steps to reduce my flare ups,  so we’re looking for a bit of relief from the costs that have already accrued so we can move forward with this goal.

Even though we have a good health coverage plan, there has still been an accumulation of expenses that have impacted our way of life. This has been covered ok, but they are starting to add up.

Hotel rooms for my husband during my hospital visits, medications (both prescription and over-the-counter, several of which are NOT covered by our plan or Alberta Health Care), compression stockings to help increase blood pressure, moisture-wicking clothing for night sweats, thermal clothing for daytime cold flares, hot packs to help raise body temperature and improve digestion, tests that are not covered by plans or health care, supplements. We also recently replaced our windows to help regulate the temperature in the house, since temperature fluctuations cause flare ups, and the furnace will be replaced soon as well. The fuel to get to appointments and treatments. The hot water tank was an unexpected, unrelated expense as well. It’s been an expensive year. And we’re not finished yet.

Not to mention having to close my business, which took away from the income I brought in. I was making mistakes that shouldn’t have been made, and I’m not willing to risk the health of my clients. This was the right thing do, although a hard decision to make.

So now looking at a service dog, we’re looking at even more expenses, which I’ll outline below to give you a general idea of what we’re looking at.

  • Puppy: $1575
  • Neuter: $375
  • Food per year: $950
  • Check up, vaccines, de-worm: $240
  • Microchip: $55
  • Crate: $0 (already owned)
  • Grooming equipment: $0 (already owned)
  • Necessities (leash, collar, food bowl, etc): $150
  • Miscellaneous (toys/treats etc): $100
  • Puppy basics training: $150
  • Manners and basic obedience: $210
  • Online-provided courses: $180
  • Private coaching: $260

We are looking at $4245 minimum for the first year, and extensive training will take place in subsequent years which will cost even more.

To pay for a fully trained dog would be more than double this cost, but Alberta regulations have changed so that individuals can now train their own service dog. There are standards that must be met in order to achieve certification, but self training allows people to bond with their partner immediately, and develop a strong working relationship together. This also means that the animal can be trained according to individual needs, and this is the method we have chosen to pursue. It will be a full time endeavour, and one that will be entirely worth every moment and penny spent.

I have handmade items for sale, proceeds of which will go entirely to the cost of raising and training the puppy. Links are provided below.

You’ll find my malas and other crafts on Conscious Crafties by clicking here.

You’ll find additional items that cannot be posted on Conscious Crafties on my Facebook page.

If you want to help, but aren’t interested in purchasing anything, we’re taking donations – with giant armfuls of gratitude. While we will be focusing on self training,  there will also be puppy classes and one on one coaching as the puppy develops and we establish our working relationship.

Any funding in excess of what we need for the puppy will be donated to Hope Heels, a charitable organization that provides service dogs in Alberta.

I can’t seem to get the Paypal donation button to work in wordpress, but donations can be made via Paypal on my website by clicking here. Scroll down, where you’ll see the “Donate” button.




THANK YOU, so much!

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!

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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.