#52SmallThings

I’ve been following The Mighty for a little while, because the posts ring SO true to home for me and the entries truly resonate with me.

Today I notice a challenge that was posted for 52 Small Things – a year long challenge to get into habits, which is something I’m sorely in need of. I even joined the community in order to take part with people I could likely connect with more.

Nope. Technology strikes again. I wrote the entry, hit “post”, assigned a user name to myself, aaaaand….. blank screen. Just white. Nothing there. No words, no submission, no nothing.

I tried to comment on the post – and same thing. The site kept telling me I was logged out, when I clearly wasn’t judging by my face in the top corner of the page. I gave up. Obviously there’s a glitch in the Matrix somewhere.

I was frustrated, but then realized there’s no reason to be. I have time to rewrite it. That’s all I have, really, is time. Sitting. Because today is a bad brain day, and I’m sitting and watching movies to avoid dizzy brain space from taking over again. Like it did first thing this morning, and nearly landed my ass on the floor.

So here I am, writing it again. But on my own blog, because I think it’s a good thing to take up. Without judgement or expectation, and no beating myself up for not sticking with it. I’m gonna try, and that’s the best I can really do.

They have goals to follow, but there are some that I really need to pick up for myself first. These aren’t New Year’s resolutions – they’re self care goals.

Week 1: EYE MASK
I have a chalazion on my left eye that I’ve been treating with heat packs since my eye appointment in November. I was instructed to do this for 1-1.5 hours a day, and I was doing really well. For awhile. That habit dropped entirely for a couple of weeks, and I’ve been good about doing it daily again. But only twice a day. I need to get this thing dealt with, which means I need to take care of it more often. I makes my vision blurry for at least 15 minutes after each treatment, which takes away quite a bit of time from seeing. But there are many things I can do without proper vision. No more excuses. And who knows – maybe if it gets smaller it’ll help reduce my double vision. My care team doesn’t believe it’s the cause of it, but I’d like to think they might be wrong.

Week 2: DRINK. MORE. WATER.
I’ve been waking up early and not ready to get out of bed. Three a.m. is not conducive to movement. But if I drink water, I need to pee, and I don’t want to have to get out of bed yet, but then I spend too much time laying there after and by the time I do get up I’m struggling with dizzy spells and it starts the day of horribly. It’s time to fix that.

Week 3: YOGA.
I have too many bad excuses why I’m not practising more, and too many reasons that I should be doing it more. I have been practicing, but not as much as I’ve wanted to. I really need to drink more water to combat the dizzy spells before performing asanas, so I can sweep the animal fur up before placing my mat down. But by the time I get enough water in me it’s the afternoon, and I need food, and practicing with a full stomach is uncomfortable, and by the time I’m ready to practice I forget about it. Thankfully, I have a robo-vacuum on the way, which will take care of the sweeping issue, and if I can get my water drinking habit handled then I really have no good excuse to skip it.

Week 4: SELF MASSAGE
It’s good to increase blood flow and and lymph flow, as well as moisturize my poor, dry, malnourished winterized skin. Without the threat of getting the hose if I don’t follow through. It’s a habit I’ve sorely fallen out of, and picking it back up has been a struggle. Once a week shouldn’t be hard to turn into once a day.

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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.

Finally, a goal I can work towards.

Hello, internet. It’s been awhile.

My surgery has come and gone. I am feeling tremendously better without a uterus, ovary and angry dermoid cyst. And changes are underway. I was told there were no complications, only to find out two days later that my perineum tore, and not just a little. I’d say this is a complication worth mentioning….

My direction has changed again, and is one that I know I can work towards but allow myself the breaks I need when I need them most. And it starts here.

The more I talk about my story, the more people I find out also have endometriosis. There are 1 in 10 women that have endometriosis – and those are only the ones that are known. Many people will go through life with their endo and not suffer any symptoms. Others suffer all of them. Each case is unique.

Most of the time, nothing is done about it because women have been told that it’s just their life now.

“Yup. You’re a woman. Pain is now your game. Deal. Haha pain meds? No. You don’t need those. You’re fine. Your pain isn’t THAT bad.”

It’s not ok. More awareness is starting to come up, and more endowarriors are speaking out.

Living in pain is NOT NORMAL. There are options. If your doctor won’t do anything, your CAN ask for another opinion or a referral to a specialist. If they refuse, file a complaint! Unless they have a good reason to deny your request, it is against their code of ethics to deny a requested referral.

Please, don’t let them bully or gaslight you, or convince you that it’s all in your head. YOU know your body, and when you KNOW something isn’t right, speak up. And make sure they listen. It’s not always easy, but stand your ground. Don’t minimize your symptoms or pain. If it hurts, tell them. And keep telling them.

You are responsible for you, and if you won’t stand up for yourself, the fight will only get harder. More women are speaking out with their stories. Is it time for you to reassess your own?

There is so much conflicting information on endometriosis, the etymology of it and the treatment for it. Research it for yourself, because you might be amazed what old school information many physicians and gynecologists live by. I specifically asked my gyne to NOT treat any endo I might have outside of my reproductive organs, because I disagreed with his treatment methods. I was respectful in my request, and he was respectful of my wishes when I showed him my resources.

The best source of information I have come across is Nancy’s Nook Endometriosis Education. Please remember to answer the questions to join the group. It is not a typical discussion forum, but a place to find solid, scientifically backed information on endometriosis and related disorders. It is a research platform to help you advocate for your own health, and it has been invaluable to me.

I left my gynecologist’s surgery table in 2009 believing that he had resolved my endometriosis with the tubal ligation. When he dismissed my severe abdominal pain a few years later, he did me a great disservice, and I’ve been suffering with worsening debilitating pain ever since then, believing that it was normal because I could not get anyone to believe me. So I stopped complaining.

That was not fair for me, and it’s not fair for anyone else. Your doctor doesn’t know what you’re feeling, and if they won’t listen – it’s time for one that will.

Stand up for yourself. Please. No one should ever wake up from surgery feeling immediately better than when they went into it. I did, despite the weakness, shakiness, horrible nausea and groin pain (if you want a REAL picture of what happens and have the stomach and constitution to watch it, look up vaginal hysterectomy with episiotomy on youtube.)

Despite the pain of surgery, I was also acutely aware of the relief from the pain in my right side that’s been there for longer than I could honestly say. I thought it was my hip. Ends up, it was more complicated than that.

I never thought I’d be grateful for organ removal. I have my current complaints from surgery recovery, but it’ll get better. It’s already better than it was before.

Don’t let this story continue for longer than it has to. Be aware of the disease, and the options available.

Sending love.

 

Special shoutout to “Endo and Us” for the beautiful video that shines a light on what endometriosis is, and what it’s like to live with.

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!