Gratitude feels like this

There was rocks and rain being thrown inside the truck yesterday. I couldn’t stop feeling wet and getting lumps stuck in my throat.

I’ve had some rough days. I’ve had friends tell me that they don’t believe my symptoms are real. I’ve had many change the subject immediately after asking how I’m doing. I’ve had some people straight up ignore me when I’ve asked them directly for something small (simply sharing a post – nothing more). I’ve had people talk condescendingly me towards me for not wanting to try a remedy without discussing it with my physician first, telling me I was giving up or not willing to get better by trying different things. It wasn’t that I wasn’t willing, but I wanted to ensure there was no (or limited) risk that my doctor might have known about before trying it. If he felt there was no harm in trying, then I’m all for it. I’ve had people mute me on social media because they’ve said they just don’t care.

Some of those things  I can chalk up to not being about me. Some of those things are limiting factors on the other person’s end, or awkwardness towards the situation, or just not knowing what to do or say. Those are things I understand, and I have no problems with.

But some of the other comments, actions and inactions hurt, and they were difficult not to take personally. I managed it, eventually, but that initial reaction felt like an icy cold slap to the face, and it stung when it came from a small handful of people I have known for a long time and I thought cared. That they didn’t is actually ok – they have things of their own to worry about, and they have their own agendas. Me expecting them to look out for me is my problem, not their’s, and I don’t typically expect things from others. I was (and still am) feeling extra vulnerable, and was grasping onto things that weren’t mine to hold onto. (I’ve let those things go. I was feisty, nervous, sad and didn’t fully have awareness of my overabundant emotions at the time. I’m human.)

But then, everything changed. And those small handful of people who I had allowed to drive me deeper into a downward spiral are suddenly muted by the huge outpouring of love and support from so many others, and from some people I don’t even know.

Seriously, universe, you have some amazing people in you. And as much as I often question the direction of humanity, this lesson has taught me that there is more kindness than there isn’t. There’s been tears and feels, but they’ve been good (if not complicated) ones.

It’s been weird for both my husband and I. Admitting to needing help is hard enough. Especially publicly. Taking help is a whole other matter. As mentioned previously, I’m one to give things away. I love it. So when people have been buying product, I’ve been wanting to give them gifts with their order, as I always do. Jess, the superhero who has taken over selling my products, has slapped my wrist numerous times for that. I gave her complete control over all of the inventory, selling, discounts and everything associated. And she’s been rocking it, without the discounts. She’s selling things better than I ever did.

We’ve both shared that we’re better at selling other people’s products than our own. At markets, I’d sell my neighbours products easier than mine. It was fun, and they were appreciative. They’d be quiet about their product, and strike up conversation a little, but wouldn’t want to be pushy with sales and allow the customer to browse. I’d pop my head over, grab my favorite product from the table (which would change with different customers) and start asking them questions about it, and commenting on the things I loved most about it. I was also sincere about it, which I truly believe made the difference.

Most of the time the customer would buy one of whatever I was oohing and aahing over.

I excel at retail sales when I have fun with them. At the sports store I used to work at, I’d focus on the customers in front of me, and not focusing on making specific sales. I worked the quietest shifts, but always had the highest sales, because they were my focus, no matter what they were looking at. My specialties were the people on a budget – because I could relate the best with them. It was amazing how much some of the other associates took advantage of people, and it never impressed me. We got commission at the time. I’m glad that practice has been ended since I worked there. The managers loved those associates for selling the high ticket items, but then they didn’t have the highest average sales.

“They are so cute, and anything has to be more comfortable than these. Where did you get them?”

I remember one elderly gentleman had come in to pick up his shoes he had on hold, and I couldn’t help but pry. He was there to purchase the newest, greatest Nike Shox, which retailed for the great deal of $299 at the time. The associate that had helped him previously convinced this man that these shoes would help his knees stop hurting while he was in the garden. The man was on disability and in pain, and he was desperate for relief.

They were basketball shoes, meant for a basketball court, with crevices in the soles where dirt could pack into and compound, rendering the “shox” useless once dirt got embedded in there. He obviously had crippling arthritis in his hands, and the work to clean the shoes in order to keep the dirt out from those areas would add to the list of things he shouldn’t have had to do.

I downsold him to a reliable, comfortable, supportive pair of $60 New Balance shoes, and gave the associate the sale for those.

Oh dear, did I ever cause a kerfuffle. The other associate complained to management, who had to reprimand me for stealing a sale even though I didn’t take it myself. The associate was also reprimanded for the unethical sale. 

I didn’t make friends there. Apparently ethics doesn’t belong in retail sales, and I’ve always tried to live up to a strong code of ethics for the benefit of others. I could not in good conscious let that man pay for those shoes without feeling guilt, and to this day I do not regret my decision to downsell him those shoes. He came back to see me personally and thank me, as the shoes actually did help reduce his pain while in the garden. This was the kind of thing I worked for. 

I had the lowest amount per sale, however the highest total monthly sales for my department, because there were customers that refused to see other people due to my honesty. They simply wouldn’t deal with the other associates in my department, and would ask for me specifically. The managers had to deal with fires often from disagreements on fairness. No one could control who the customers wanted to buy from, however, and there was nothing that could be done about it. I was always on time, I didn’t steal sales from other associates, I found associates to pass customers to in other departments and I treated everyone fairly. I was isolated from the others, but it wasn’t a big deal to me. I was there to work, not to make friends, which wasn’t the same attitude that many others had. I didn’t mind.

When it came to my own products, however, I was no different than those other quiet handmade vendors. I’d converse, talk and answer questions, but didn’t want to come across as over zealous, so didn’t push sales. And I’ve never done so poorly selling products as I did my own.

That’s not to say I did poorly, mind you – but I didn’t have the same exuberance about it as I did selling other people’s products.

It was never for lack of confidence in my products – while sure, I’ve made a few mistakes and bumbles (seriously, what company doesn’t), I’ve always loved the things that I’ve made and have been proud of what I’ve  done. I think the issue lies more in the self, in asking people to pay me for the things I do. As much as I’d try to talk myself up that I’m worth what I ask for, I think deep down, I didn’t believe it myself and it came across that way. Or, not that I wasn’t worth it so much as just wanting to enjoy what I was doing without worrying about the monetary aspect behind it.

Which makes for TERRIBLE business practice.

I was quiet yesterday, and my husband noticed. My feelings were strong – and confused. I was elated by the outpour of support from so many people, while dreading taking their generosity, while grateful for it, while sad that those I thought would be more supportive disappeared, while humbled and embarassed, but proud of reaching out instead of falling into further trouble. I was also glad to have the thought of business off my mind, while sad to be letting it go.

Emotions are complicated and hard, man. But I’m ok. I’m more than ok. I am so, so blessed to have such amazing people in my life.

But gratitude and love win. Every time. And that’s how I’m feeling right now.

Plus exhausted beyond reasonable comparison. The last few weeks have taken alot out of me, and I don’t feel like I’ve given myself the proper chance to rest and catch up. And the more tired I am, the less I sleep, and the worse it gets. And today I’m definitely in a huge energy deficit, and I’m just staying in bed. I’ll take a break from that to do a small yoga practice and move some blood and tissue at least a little, but I don’t think I’ve got much else. And that’s ok. I don’t have anything I need to get done today, and nothing pending, and anything that’s on my to-do list can be put aside for another day.

This is where my boundaries and self care kick in. I’ve pushed myself here and there, mostly to see how my body would respond. It’s little experiments to know how far I can go and what activities I can do. Sadly, it’s not nearly what I’d have hoped for, but I’ll take what I can.

My MRI is on Saturday, which is faster than anyone expected. If the MRI comes back with issues, I’m being sent to a neurologist. If it comes back clean, then a rheumatologist. 

We’re narrowing things down, finally, and I’m looking forward to finding a better normal than I’ve had recently. It’ll still be awhile, but it’ll come. I have faith.

But in the meantime, I feel so grateful for everyone who has helped us, and I’m excited for the day that I can pay it forward again.


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.

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!

Not OK today.

I got up this morning to use the little girl’s room. Nearly fell over. No reason – just lost my balance. This is “normal” for me, these days. Took my meds. Grabbed a hard boiled egg from the kitchen and poured the salt on it. Filled up my water bottle and dropped the fizzy tablet of electrolytes into it. Warmed up my heat packs and went back to lay down with everything in tow. This is my morning, every morning. A heat pack for my belly to help get my guts active, another for my eyes to fight the chalazion on my eyelid (it’s unrelated to everything else going on. Just one more thing to deal with.) The meds to keep my pain levels in check and to reduce heartburn. The egg to get a protein boost to help fight off the brain fog a little. The and electrolytes to help retain body fluid, which helps reduce the dizzy spells a little. They all have to be finished before I get up again. If I don’t finish these things, I notice it.

Breathe in.

Breathe out.

I’m not feeling strong today. But it’s the same as yesterday, and it’ll be the same tomorrow. This is my thought. Normally, I go through the motions with no problems. Not today. I’m especially frustrated today, and I muffle a sob from under my eye pillow so I don’t wake up my husband and cry quietly to myself. It feels good to release.

He worries about me. I know he does. I feel so bad asking him to stop certain things he’s always done. He does this strange head bobbing dance which is just goofy, especially when he needs a haircut and his hair bounces all over the place – but he sometimes gets in my face with it, like he did last night (or, was that the night before? I’m honestly not even sure) and it’s overwhelming in so many ways. Too much motion, my eyes can’t focus, which causes them to hurt, which causes me to flare, which causes my body to heat up, and my face tingles, my head hurts, I get light headed and dizzy and he hasn’t stopped because he thinks I’m playing around but he gets it quick when I snap at him to stop while my vision gets darker and my legs get weak.

Instant regret. He was playing and having fun, and I was the fun-killer. The look on his face is mixed with the sting of getting snapped at and concern.

That happens alot, lately. Or it seems to. He says I’ve been really good about it. But I can’t help but feel horrible to have to resort to snapping in order for the over-stimulating things to come to a stop, because I’m just not able to make the words come out gently. I just need things to stop, sometimes, so that I can find my balance, brain, and and sight again. It’s not that I’m angry or annoyed at the actions themselves – I just can’t tolerate them for some reason. One thing gets set off and creates a domino effect in my body, and I have absolutely no control over it.

Breathe in. Promise to do better next time. 

Breathe out. Let it go. No point dwelling on it.

Wipe my tears. Find some pants. Brush my teeth. Take the dog out. Brush her fur – my arms are tired really quickly, and it’s a short brush out. I’ve vowed to do at least a bit of grooming every day to try to cut down on the hairballs in the house. She finds her toy and wants to play, so we do! By the fourth or fifth toss, though, my arms feel like they’re going to rip off with each throw. It’s a good thing she’s old and tires out quick, too.

Come inside, wipe here paws, perform her pre-meal games with her, grab a yogurt, fill my water bottle again and go sit down with my feet up to build up some more energy again.

This recharge will give me the most energy I’ll have in the day. After two bottles of water and a couple of small protein snacks, I am normally ready to get some things done. Some days are easier than others… but today isn’t one of them.

I wander in a few circles in the kitchen, trying to remember what I went in there for. Dave asks if I’d want some pancakes if he made them. Yeah, that sounds great. Thanks, baby. Hey, what did I come in here for? He looks at what’s in my hand. Heat bag? Oh, right. I need to do my eye mask again. Thanks, baby. He asks if I’ve been getting my steps in every day. Yes, except for yesterday. I’m not always getting outside for my walk, but I’m getting my steps with cleaning and housework and general pacing when I can’t remember what I’m doing. He suggests going to By the Lake Park after pancakes. I know it’ll be exhausting, but it sounds lovely. I miss being outside.

I heat it up and go sit on the couch again, the weight of the eye bag spreading a comforting warmth through my eye sockets. I sigh. I remember to check my pelvic floor – yep. Tense. As always. I relax my legs. Relax my pelvis, my abdomen, my arms. Relax my face. Let myself sink into the couch, remembering one of the mantras I learned in yoga teacher training. But my mind drifts badly today, and I can’t keep focused on the mantra.

I want to do things. I want to read these books I have piled up (but reading seriously hurts, and takes away from the story I’m trying to read.) I want to walk around By the Lake Park (but I’m SO bloody tired, even though I just woke up, and even two blocks is exhausting and my legs feel heavy by the end.) I want to watch my husband do dumb, harmless, fun shit (but it’s entirely overwhelming for my senses, sometimes.) I want to go on vacation (but we’re broke from meds that aren’t covered by benefits, eye tests, appointments that can’t be direct billed or aren’t covered, hotel stays for Dave while I’m in procedures, the new hot water tank we had to install…. it all adds up.) I want to be healthy (but, well, I don’t seem to have any control of that no matter what I do.) I want a treatment plan (but there are still tests to be done to rule out diagnoses and the treatments may not work without knowing what it is we’re treating.) I want to scream (but my head hurts.) I want to visit people (but even the ride out to them is exhausting, and I’m done before I even get there.) I want to be happy (but, sometimes, I’m just not, and I can’t help that, but it drives me crazy anyways.)

Dave comes and sits next to me and holds my hand.

“Hi baby! What’s up?” I ask. He doesn’t need to know how bummed I feel today.

“Nothin’. I just wanted to cheer you up.”

Damn. He knows. I sob again. “Why’s that?” I say with the best grin I can manage, which I’m sure is more like a grimace, my voice cracking, my eyes tearing up. “I’m just fine.” Heh. I’d like to nominate this Grammy award to…. anyone except me. I’m not good at acting through my personal Swamp of Sadness, even with the heat mask hiding my wet eyes.

He knows and feels my frustration. We do everything together. We used to wrestle all the time. I’d get hurt everytime. Usually because of something dumb I’d do. It was fun. But we can’t do that anymore. He can’t dance silly around me anymore. We can’t listen to loud music anymore, have bright lights, do many activities we used to do. He’s picked up alot of the tasks that I used to do, because I haven’t been able to keep up. We don’t go out to eat nearly as much, because I have to be so, so careful with what I eat. We don’t eat together at all anymore either, because I have to graze. I can’t handle meals anymore, and I can’t handle most of the things he eats at all. I’m in bed by 8 or 9 most days feeling ready to crash, even though I struggle to actually fall asleep until 11 or 12.

Everything is different, and neither of us really like it.

Neither of us is at all upset at the other for it. It’s something we can’t control. But that doesn’t help. I still feel guilty. I feel insecure. I feel inadequate. I’m not able to keep up my end of things. I’m watching TV while he’s at work. I mess up the budget. I waste ingredients making bread that doesn’t turn out because of something I missed. I forget to do things while I’m on the way to do them. I tell him I’m going to do something and then forget. I forget to finish tasks because I forget what I’m doing while in the middle of it. I’m so tired by the time he’s on his way home, and it takes everything in me to create a passable meal for him for when he gets home. He doesn’t except me to do it, but I want to. And all of the old insecurities about working (or, rather, not working) and not getting along with people come rushing up at me again, and I suddenly wonder if I had just agreed to wash the staff dishes at the PCN maybe they would have liked me better and if I’d still be working there.

What. The. Actual. Fuck. Where did THAT come from? The people that hired me there seven or eight years ago were narcissists and played a gross little mind game with me, in hopes that I’d quit, because my supervisor admitted that she told me too much and she didn’t want me to accidentally let anything slip. That, and they wanted to hire part time help in order to save the cost of providing benefits, and I wasn’t impressed with what they were proposing. They asked, and I gave them an honest, fair answer.

I was devastated when they fired me from that job for no real reason, and the reasons they did fire me for were unjustified and undocumented. Not to mention outright lies. It was a huge blow to me at the time. So why was this coming up now? Why do I care about something that happened so long ago?

Insecurities and anxiety are the assholes that work together to bring you lower than your current low. If I’m going to be down, and no one else is around to kick me, I need to do it myself. Old habits that you think are hard to kill sometimes don’t actually die at all and just go into remission now and again. So is the case here. Old stuff that has no place in my life anymore. Especially now.

Dave kisses me on the forehead and goes back to pancakes. I love when he does that. Some say lavender can cure all things, but clearly, they’ve never had forehead kisses. They are the concentrated version of anti-depressants in quick-release form.

I destroy my pancake with peanut butter. Did you know that “natural non-separating” peanut butter only doesn’t separate because it needs to be refrigerated? Keeping it cool also keeps the oils from going rancid, of course, but that’s the trick to making it “non separating”. Which means that it’s stiff when it’s cold. Which also makes it “unspreadable”. We got a giggle of my mashed pancakes, but they were tasty nonetheless.

It’s chilly out today, but nice enough for a walk. I bundle up – I know I get cold easily. Always have. I figured I’d have little problem at -2C, but I feel the bite of the tiny breeze and wish I would have worn a scarf. Oh well. I draw my hoodie around my face more, and be grateful to be outside. The breeze bites a little, but it’s fresh and relieving. We chatted about those kinds of things we chat about – a new puppy which is guaranteed to enter our lives at some point, our old dog we can’t take out in public, the graffiti on the gondola half way around the path, the new updates to the park since I’ve been to it (which has been awhile), what I can see clearly (and not – like the deer he tried to convince me were in the distance. I saw slow moving snowballs.) I tried to explain what I saw… and got frustrated again, because I don’t know how to explain how my vision is wrong. It just is. The colors are wrong. The depth is wrong. The hues are wrong. The outlines are wrong. Everything just looks wrong, and I don’t know how to explain it.

I felt more alert than I have for a long time, but my legs grew quickly numb and my feet started to drag. My legs were so heavy by the time we got around the circuit. It’s not a long walk. But – I got around it. Personal victory! We had a couple of stops to make on the way home to hot chocolate and my fuzzy blanket. 

And now I’m exhausted. I want to go to bed. I struggle getting to sleep at night, however, and I worry that having a nap will result in poor sleep overnight. Not that it much matters, mind you – I’m exhausted no matter what, anyways. With limited energy, though, I also don’t truly want to nap and miss out on more the day than I already miss out on. There are things I want to do. A cat to snuggle. Crafts to make. Plants to care for. It’s not even that anything HAS TO get done – they are things I enjoy doing, and I just want to do them. And it’s frustrating that I can only do a sliver of a fraction of what I used to do, and have no idea how to get that life back.

Or if I can.

And this is the way that thoughts spiral out of control, and this is what leads to despair and depression. And that’s a dark, scary place that I don’t want to be in again. That hole keeps getting bigger, and darker, and deeper, and the edge keeps coming closer faster than I can run away from it. Today I’m on the edge. Tomorrow, hopefully, I can get ahead of it again.

But not so much today. Today is a bad day. Today is dark, forlorn, lonely and resentful. It’s easy for someone to say “Hey, Krys, snap out of it! You’ll be fine!”

But I’m not fine. Not today.

One of the things I’ve really started to do this year and last is focusing on “now”. Living in the moment, in the present, instead of dwelling on the past or focusing too much into the future. And I’m tired of the moment. Right now, things suck. Right now, I feel like shit. Right now, I would be willing to do almost anything to get a restful night’s sleep, or to have my mind back, or to be able to have normal vision again, or to have a relieving shit without having to coax it out even with stool softeners and “detox” teas. I don’t like the current moment. Not in this body, anyways. And this adds to my frustration, because I feel so ungrateful for everything around me, because I want more and feel like I’m not happy with what I have. The rest of my life outside of my body is amazing. I want to enjoy it. I’m enjoying it most days in the ways I’m able…. but today, I’m struggling with that enjoyment. Today, I want to yell at whoever is responsible…. 

But really, that person is ultimately me. If I had taken care of myself better before, maybe things would be different.

But I didn’t. And they’re not. And yelling at myself won’t do any good.

So today is a down day. And tomorrow I’ll be ok again, until the next day that I’m not.

This isn’t the kind of day I share often. And probably won’t much. But they happen. And if you happen along my blog because you find yourself in a similar situation or place, know that it’s ok. You’re not alone. And you’ve got this. It’s ok to be on edge, it’s ok to be sad, or angry, or resentful. It’s ok to need to step back or do what you need to to stay sane. Keep yourself together in whatever way you’re able.

For me, those things that ground me most are chilly walks outside, hot cocoa and forehead kisses.

Little changes can be bigger than they seem

My days are plugging by, with me plodding along an old, worn path I’ve never been down and I’m taking in the scenery as I go. I have no idea where I’m going. I’m just going, and wherever I end up…. there I’ll be.

It’s really not such a bad thing, most days.

Other days, I’m struggling. I get frustrated, sometimes, especially when the brain fog is thick and my eyes are tired. Have I mention I wake up exhausted? Sleep doesn’t help, and getting through simple tasks takes all of the energy I don’t have. I’ve been a person with goals for so long, even if they weren’t incredibly clear, I had them. They were fluid, often transparent, occasionally tangible, and seldom met to completion. And it worked for me. At least, I thought it did.

Changing that way of being out of necessity has it’s ups and downs, and there are no words that can really portray what it’s like. Most days, I’m content to just do my thing, which is maintaining the house, writing, crafting a little and taking care of the plants of animals. Very simple, very easy, but still exhausting. Other days, I’m frustrated, mournful of the life I had and want back, and resentful that the more I tried and still try to be healthy, the more my health deteriorates and there seems to be no way to win.

(Don’t worry. Those phases pass. But they happen, and it’s ok that they do. I’m human. I’m expected to have bad days, too, and I have to allow for that.)

Life is life. It’s not a game. There is no winning or losing – there’s living. And either you’re living or you’re not.

And oh, the things people say without really knowing how much they hurt. I’ve been learning this lesson, and learning to control my knee-jerk reaction.

“Keep your chin up! At least you don’t have cancer, right? At least you’re still walking. At least you are functioning. Don’t worry. Everything’s going to be alright. I’ll buy you a drink when you’re better. Oh, you look so healthy! You look so great! Are you sure you’re not too focused on your symptoms? Have you tried supplements/vitamins/magic smoothies/dart frog poison/essential oils/acupuncture/stabbing yourself in the eye with a fork?”

The list grows. There’s always some new miracle cure, some amazing diet, some medication or happy thought that will make everything better.

It’s hard to cure something when you don’t know what it is, nevermind if it’s curable or not.

And the thing is, as frustrated as I get, I have to remember that not oh-so-long ago, I didn’t understand either. I didn’t understand the crippling exhaustion, or the heavy brain fog, or the heavy weight of the limbs, or the affects of gastrointestinal distress. I didn’t understand that sometimes eating healthy isn’t as easy as it seems. I didn’t understand the fear, the insecurity, the disbelief from others. And I definitely didn’t understand how unhelpful I was being while trying to be helpful. I really wanted to help. I really thought I could. And this experience has taught me that, sometimes, it’s just not as easy as it seems.

It’s a good lesson to learn. One that I’d like to graduate from and move on, now. The lesson is imprinted deeply. It’s a humbling experience, to be sure. I honestly felt like I was healthy and would live a long time that way, and I really thought I could help others feel better, too. 

But that certainly changed. I have no idea how long I’ll live. Maybe a long time. Maybe a week. That’s the thing, though – we have no control or insight over that, do we?

I wanted to help people feel the same I did, because I felt SO GOOD. I was on the healthy bandwagon, because I really believed it was the thing to do. And lately, it’s been really hard to know what to do, what to believe and how to move forward. If I can’t help myself, how can I possibly help others? This has been a huge blow to my own confidence, and I find myself questioning everything I’ve learned and everything I thought I knew.

And where I stand is where I am. I’ve let go of so much. I’ve let go of the things I thought I knew. The things I still know. The things I didn’t know. The things I have yet to know. I’ll know what I know as I get to know them. But sometimes, things change, and so does the knowing that comes with those changes. 

Letting go is hard to do. But it’s getting easier, and the more I let go the easier it is to move forward into the big, scary unknown.

Multiple Sclerosis. Lyme Disease. Lupus. Postural Orthostatic Tachycardia syndrome. Neuralgia. Mast Cell Disorder. Myasthenia gravis. Fibromyalgia.

We don’t know what’s up. The big ones on the table right now are MS and Lupus. It’s a waiting game that I’m just trying to survive with the best quality of life I’m able to have… which involves warm blankets, heating pads, furbabies, hugs, forehead kisses, hot chocolate, and a whole lot of forgiveness for myself. This might not be enough for many people who want to know answers right now – but it has to be good enough, because it’s all I’ve got at the moment. So I’ll take my comfort where I can, and be grateful.

Hari om.

Little Things

Sometimes having the most simple thing can make everything seem just that little bit better.

Right now, that thing is fresh ginger and tumeric tea. Nothing fancy. Just that tiny bite of the tongue from ginger and the rooty, grounding flavor of both of them, with a hint of honey. It’s simple, tasty and warm.

I have 2 journal entries I’m trying to write, and it’s getting harder to do that. Writing itself isn’t so bad – I can type with my eyes closed. But the words are getting harder to find, and proofreading is harder to do, and making things coherent isn’t as easy as it used to be.

I’ve always been wordy, but lately… my words are faltering.

And I’m struggling with it. My left eye has gone completely blurry, and it’s become hard to focus on anything for any amount of time.

But I’m finding ways to makes things work. Minimizing the work that needs to be done, asking for help when I need to, paying attention, being as patient as I can…

Today I expanded my yoga practice. I had been performing very limited poses now and again, but today I did a full 20 minute practice, without standing poses. And you know what I found out?

My body isn’t my own. Well, it is, but it sure doesn’t feel like it.

My joints feel similar to before I started to lose weight. I can’t kneel again, my hips have stiffened up, my neck and shoulders are angry rock corrals. I’ve been slouching for so long to accommodate for the cyst at first, and then after surgery to keep off the painful perineum sutures, that my hips and tailbone feel like they were sun baked and dried out. My muscles have deteriorated and I’m not able to hold poses for any amount of time without shaking.

And you know…. it’s ok. I’m grateful for my body, even as broken as it is. It’s only treating me as well as I’ve treated it for way too long, so the patience is needed. It’s time to be gentle, kind and nourishing.

I’ll get my book written.


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?



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!