When the doctor is wrong

When the doctor is wrong

I sat on this for a few days and I debated on whether I would write about this. The reality is, I couldn’t justify not speaking up about this. I have worked in the medical field, and I have been on both ends of the world of medicine. I have been the person people turn too, and I have been the one turning to people. As those with chronic illness are acutely aware of, it is very easy to get lost in the system. It is a time consuming and painstakingly slow process to find a diagnosis. It took me over 2.5 years to get diagnosed with Postural Orthostatic Tachycardia syndrome. That was 10 plus years ago. I went from being an athlete, working a dream job, living it up……to barely being able to walk my dog without having to sit down and rest. My heart would race every single time I stood up. At the time, this condition wasn’t quite as recognized as it is today, so I didn’t blame the doctors who threw their hands up in the air with me. However, it was frustrating at the time because I was told that I was fine, that it was all in my head. Why? Because I was young, and healthy. I was told it was probably anxiety. Nope. I didn’t have anxiety. What I was anxious about, was why my heart rate was going wild. I knew something wasn’t right. No one knew me better than myself, and I didn’t quit until I had a name for it, and a treatment for it. I knew I would get an answer, and to be honest, I understand the health care system and that to have the health care in this country that we do( for which I am grateful), sometimes it is going to take a while. I am ok with that.

However, what I am not ok with, is waiting months and months to see a doctor that you hope might change your life, and having them treat you poorly. Having a doctor not listen, or brush you aside. Specialist need to realize that patients wait months and months with debilitating symptoms or illness, and so much hope lies on that one date that they have marked on their calendar. Hope is what keeps people alive.

Photo by Yelena Odintsova on Pexels.com

I had recently had my hope dimmed, and was treated poorly by a doctor who’s appt was etched in my calendar for months. An appt that I had hoped would bring clarity, and with that answers. As some people may or not may not know, for this past year I have had some medical issues popping up on top of my POTS diagnosis. It has been a very difficult year for my physically as a result, and I have been referred to a multitude of doctors, and I have visited the ER a few times. While most of the doctors have been great, and have listened and are genuinely concerned, I just met one this week that I just can’t ignore. This doctor, from the time I walked into his office, had me pegged. He didn’t care what I had to say.

Some background before I tell you about this doctor, I was put on a certain medication for my adrenaline rush issue that comes with PoTS. I wasn’t put on it for anxiety, but for my adrenaline. I used to get really bad rushes in the middle of the night, and this seemed to calm it. However, after 2.5 years of being on this medication(which is a short term drug usually), I had many different specialist recently tell me that I shouldn’t still be on it. Some wondering if it is causing some of my issues. As a result, I have begun the process of weening myself off of this. This type of medication is not a drug that you can just quit cold turkey without complications. It is a slow process.

This particular doctor didn’t care what I said, didn’t listen, didn’t ask, instead he just told me instead to double my dose of said medication, when I was having a flare, and to deal with it. I then informed him that I was weening off it and that I wasn’t interested in taking extra, and then I informed him that I am also extremely sensitive to that medication. I had once tried taking an extra dose, and it made me incoherent. His response to me was ” well, you’ll either be loopy or you’ll sleep it off. Either way you won’t remember your symptoms”. So just take an extra dose and deal with it.

I was slack jawed. I turned around and left his office. The fact that a doctor would tell me to take an extra dose of a medication that I was trying to ween myself off of, and to take a medication that caused me to become incoherent when taken in excess (I have 2 kids btw), was absolutely ludicrous. I have been in a personal hell for a year, with my symptoms. To be told to take a drug to make myself sleep or become incoherent, every time I have a flare (which is sometimes daily), is disgusting. Especially when I don’t have an answer for what is going on. I don’t want to knock myself out for the rest of my life to deal with this! I want an answer! I want a fix! I want to feel better! I don’t want to be doped up so I don’t feel anything! How this guy can call himself a doctor is absolutely gross.

Photo by Brett Sayles on Pexels.com

When I became a paramedic, I tried every single day to help my patients the best way I could. Doctors take oaths. When did oaths become less about fixing someone? I am someone who literally walks into an office and begs them to fix me. Whatever it takes, fix me. Don’t give me a pill as a bandaid. Doping someone up, is not fixing them. Tell me why this is happening, and tell me how I can fix it.

This process isn’t fun for me. Being in agony isn’t fun. Being scared isn’t fun. Not being able to do things with my children isn’t fun. Dealing with symptoms and waiting months and months isn’t fun but I will do it for as long as it takes if it means an answer. My hope lies in doctors. Every time I am told that there isn’t an answer, my hope dims. Every time that I have a flare, my hope dims. I will not have this one doctor dim me. I will fight. I will prove him wrong. Just as a did before with my pots. I know me.

I am thankful for a great family doctor who always takes the time to listen to me, and is constantly trying to find an answer for me. Cheers to all those doctors out there who have been great to me.

It just takes one doctor. One doctor who will listen, and think, and figure it out. One doctor. Thats all it took for my Pots Diagnosis, and that is all it will take now.

Why it is time to stop neglecting yourself

Why it is time to stop neglecting yourself

Does diagnosis matter?

I chatted last night with a fellow chronic illness warrior. We covered everything from how we were diagnosed, to how long it took to finally have an answer, and how we felt when the doctor eventually whispered its name to us. But, I had one thought that kept re-generating in my head after we chatted, so simple, yet so complex. What are we doing now that the illness has a name and now that name looms in our bodies all day and all night? That thought festered into, were we relieved? Did having a diagnosis make it easier? What has it really changed? POTS. LUPUS. MS. Did it matter in the end?

It took 2.5 years to get a Pots diagnosis for myself. I am now in limbo with yet another possible autoimmune condition, which has thrown me into a tailspin for the last few years. I am in the middle of the medical web of referrals right now, where I am the lead detective, hunting down whatever leads I get, trying to attach a name to the perp that has alluded me and stolen valuable health hours away from my life. If you were to come over to my house, it would be akin to seeing those forensic cops connecting the yarn from suspect to clue, to yet another alternate suspect. All the yarn connecting to one invisible mug shot. Who are you that has evaded me; I have often whispered. Show yourself! The one thing that I have learned since my initial diagnosis over 10 years ago, is that you have to advocate for your own self. No one else can do that for you. I have always felt that I was doing just that, advocating for myself. But, after my chat last night, I realized I wasn’t. Not even close.

I wasn’t advocating for myself

In the conversation with my fellow warrior last night, we shared a laugh when we discussed the luggage that we both drag around to other places if we go out. I know I touched on this in the blog ” 5 things to know about pots”, but we chatted about how backpacks and heating pads and other essential items had now become a part of our daily wardrobe. My backpack was my lifeline. It held everything I needed to sustain myself throughout my day. Except, it wasn’t true. After our chat, I realized that a majority of these items I end up stuffing into that bag, was needed because I would ultimately end up failing to take care of myself. I was failing to listen to my body. Failing to do what was right for me. I wasn’t packing the right stuff into my bag, because I wasn’t packing the right bag.

Photo by Luis Quintero on Pexels.com

Self-advocating doesn’t mean your not self-neglecting

In the traditional sense, I was advocating in front of all my varied doctors and therapists, and who knows how many other professionals I had been to over the years. But outside of that medical diagnostic game, my aim was to give myself a life. Give my girls and husband a great mom and partner. Be a great friend. Be a great daughter. To live to the fullest. To explore. To dine. To wine. To have the clean house. To provide an income. To keep the kids active. To host the best party. To be the one who always says yes to going out. To making others believe that I didn’t have an illness. If they can’t see it, I could hide it. To ultimately paying for it later. Truth. Out of fear of having to make my husband leave a party or evening early I would suffer. Out of fear of my kids not getting enough fresh air, I would stand out in the cold longer and suffer. Out of fear of say no, I would walk longer or farther than I should. Out of fear of being a nuisance, I would sit on the high stool at a restaurant, knowing that my legs dangling down for two hours would hurt me later. Out of fear of looking dumb, I wouldn’t lay down at a friends gathering, when I clearly needed to. I would stand in the sun, knowing my body was overheating with an inability to regulate itself, just so I wouldn’t feel rude leaving a BBQ. It goes on and on. The ending was always the same. I would then, unzip my pack and use it all to try and recover, or I would head to the hospital.

Nobody is asking for you to do all these things

The worst part is, not one person ever put these expectations on me, except myself. I failed myself. For my own egotistical gain, I ignored the fact that I had a condition. I didn’t want it to exist, so I carried on and had the attitude that I would just deal with it later. No one would know, and I would keep up the illusion of someone with her shit together. For what purpose? Would these people really care if they knew how I really felt? The ones I align myself with, all know of my condition, and would be understanding, but I didn’t give anyone the chance. So I chatted with my husband last night, and started owning up to all the times I should of said no. All the times I should have left the party early. All the times, I should have stayed inside, or moved to the shade, or just not cared what other’s thought. I started compiling a list of things that I need to start doing for myself.

How I am planning to change? (A few items off of my list)

  • Take 2 cars to events, so I have the option of leaving early without feeling bad about taking that time away from my husband or friend that I am out with. (They would come back with me, but I don’t believe they should always miss out on my account either)
  • Don’t go to events in the middle of the day, during the worst heat of the summer. Sounds simple, but I say yes to these events all the time, and I pay for it. Instead, say yes to the events early in the day or later in the evening when the temperature is more manageable.
  • Ask for a table with chairs instead of stools.
  • Lay down at a cocktail party, and stop giving a shit who has to step over me.
  • Stop hosting, and allow myself to be hosted once in a while. (this one is hard for me)
Photo by Spencer Gurley on Pexels.com (Your true friends will carry you)

So does diagnosis matter?

So to answer the question, does a diagnosis matter? Yes, it does. It gives you answers. There is relief, but that also comes with fear. Fear at knowing you have to find a way to live with this in your life now. Does it change anything? It can help you manage your symptoms easier, but in the end it is YOU that manages everything. You manage the outlook on your illness. You manage your daily outcome. You manage your thoughts. You manage the life you want to present to the world, and the life you want presented back to you. So stop neglecting yourself. Put yourself first. Trust in your friends and family. The ones that are meant to be in your life will not resent your shortcomings, but embrace them and help you live your life as much as you can. They will allow last minute restaurant changes, or let you sit in the shade while they sweat it out in the sun instead. They will sit with you while you rest your legs, and they will take you home early if you just can’t handle the pain anymore. They don’t need a front. They take you as your are, and that is enough. So I consider this blog, the start of my journey in learning how to not neglect the very thing I demand my doctors find. Me. Do I still need that backpack? Yes, but maybe now it can be a little bit lighter to carry around. Packed properly to sustain me, and not to rescue me.

How Michael J. Fox solved my chronic mom guilt

How Michael J. Fox solved my chronic mom guilt

So truth be told, I am married to a Back to the Future movie fan. We have a gigantic movie poster in our basement with Marty McFly, time machines in various corners of the house, pictures of us in front of replicas of time machines and yes, we have even been to the location of the back to the future house in L.A, and the Twin Pines Mall (fans will understand). Super exciting stuff. The reality is, I actually became a fan of Michael J. Fox when I watched the movie “Secret of my success” a million times when I was a kid. I know it sounds like a super random movie to grow up watching, but I was always rooting for the underdog I guess. So yah, he has been a part of my life for a while now, and it also doesn’t hurt that he is a fellow Canadian. So you may be asking, how in the world did Michael J. Fox, the one and only, manage to put my mom guilt into any sort of perspective for me, let alone create an Oprah moment in my brain. It all came down to two quotes.

You see, I picked up his newest book “No time like the future”, because I read that in the book, that he started to question his never-ending optimism. For years, he has been a huge role model for many in his battle against Parkinson’s disease, raising money and awareness to help those living with the battle. His ability to uphold his crazy amount of optimism, always made me shake my head in wonder. Who was this man, and how was he able to do this?

My inspiration, and solver of dealing with my Chronic Issues. Mr Michael J.Fox. Picture from his Instagram account.

I picked up his book on the day that my own health struggles started to get worse, and I could feel my own optimistic foundation starting to crumble. I guess I needed to hear some encouraging words that what I was feeling was a normal course of progression, as I filtered through this life with my illness. Now, I don’t live with Parkinson’s disease, but I can tell you that the way he described his daily feelings, pains, carefully planned medication dosing to prevent attacks, and even the way he had to skillfully plan every move he made with his body, sounded a lot like how my daily battle with POTS goes. I picked up his book, because I wanted to gain more of an understanding into how time will affect my own health physically and mentally. Instead, I walked away with wisdom that is helping cure my mom guilt. Something I wasn’t anticipating.

One thing that I have struggled with since having kids , is the feeling that I can’t keep up with them, and that I won’t be able to do things that they ask of me. This condition doesn’t allow me to run with them, or tackle the steepest toboggan hills with them. Many activities I manage better while sitting, which is not an easy thing to ask of a 3 and 5 year olds with Tasmanian level energy. My mind doesn’t want to sit though. My whole life was sports oriented. I was an athlete, and still am an athlete mentally, just not physically anymore. In my mind, I just want to go for long bike rides with them, take them to see the many waterfalls on the hiking trails close to where we live, play tag, and chase them around the house and hear them squeal with delight. I wan’t to take lots of vacations requiring stamina. I want to be who I was before they were born. But I can’t. As a result, I fear them thinking I am lazy, or not interested. Often, I end up overcompensating and staying too long on my feet, or standing outside longer than I should in the cold. Both of which, I end up paying for afterwards.

It is as simple as this. What my mind wants to do, and what my body can do, haven’t caught up with each other. I am having a hard time accepting what I have, and it has been over ten years. There is no cure. It isn’t going away. I didn’t ask for this condition, and I was angry. I didn’t know how to fix it, and then I saw it. The first quote. It simply said:

“The truth is, I don’t want to live like this, but I have found a way to accept the fact that I do”.

Michael J.Fox – No time like the future

I hovered on this line in the book. It was so simple. I didn’t want to live like this. Michael didn’t want to live like that. Who would ever want to live like this or that! But he had found a way to accept the fact that this was his life. So, I had to find a way to accept that this was part of my life now. Like it or not. That was the struggle though, because I didn’t know how to accept it with kids. The guilt I felt at them having a mom who had this chronic issue, was overwhelming on days. I worried about everything I couldn’t do for them, or with them. I worried about them having to care for me one day, or the stress I would put on them if they had to worry about me. Every time I could only walk a short distance, or needed to lay down, or I couldn’t play with them on the jungle gym, I worried about what they would think of me as a mom. I was fearing the look of disappointment on their faces that I one day imagined would happen. Hearing them whisper to their friend that their mom isn’t able to do stuff and how much it really sucks, while thinking I was out of ear shot. This is what I feared. But, then I saw the quote that changed me:

“The mistake I make at times is to assume that my kids are looking at what I can’t do, and not at what I can do. They see through the disease, and they see their dad”.

Michael J. Fox- No time like the future

I had been making all these assumptions before they had ever materialized. I wasn’t giving my kids credit, that they would see me for all that I am able to do, and all that I will always do for them. Even though I can’t climb those toboggan hills, I am always at the bottom waiting for them to come down and see their smiles. Even if I can’t chase them around the park, I am on the bench beside the slides watching them learn and grow. Even though I can’t stand and bake 400 home made muffins before the bake sale, I will make sure every time that those kids don’t walk in empty handed. Even if I have to lie down and teach them math or piano lessons, I am still right there beside them. Sitting, standing, lying down. Who cares. It’s being there that counts. I am there. Maybe they will have to do the big hiking trails with their dad, while I wait in the car. But, I always will be there, and I have to give my kids enough credit that they will see through my illness and see what I can do, and that I am their mom. That is all that matters. Thank you Mr Fox, for inspiring someone that you don’t know.

I am in no way affiliated with the sale of his book, or with Amazon. I do not know him at all, but I do think that it would be awesome to one day chat with this funny ass man! The reality is, I just want to encourage others to check out his book if you are in need of some inspiration, and especially if you are a parent living with a Disease/Chronic Illness. Sometimes all it takes is knowing that someone else is or has walked a few paces and places in your shoes. You can check out his book at:

https://www.amazon.ca/Time-Like-Future-Considers-Mortality/dp/1250265614/ref=sr_1_1?crid=3K0RJ3KU568WY&dchild=1&keywords=michael+j+fox+no+time+like+the+future&qid=1611541378&sprefix=michael+J+fox%2Caps%2C341&sr=8-1

Gratitude for 2020

Gratitude for 2020

“We are all in the gutter, but some of us are looking at the stars” ~Oscar Wilde

What does this quote mean to you. I recently heard this in one of my meditations and I paused it, whipped out my phone, and wrote it down. It resonated. This mediation was on gratitude. Specifically gratitude for 2020. My reflection when I heard this , was that we are all struggling in one form or another. With the year we have all just been dealt, we are all feeling like we couldn’t get any lower in our struggles. But for some, the golden select few out there, they are somehow able to remain positive throughout it all and focus on the present and look towards a brighter future.

During the mediation, my guide asked us to start thinking about all the things we are grateful for that occurred during 2020. In my head I scoffed at the idea of this. I thought, are you kidding me right now? This year was crap! The guide, as if reading my thoughts, gently prodded us to really dig down deep and reflect. I’ll admit, my first thoughts were filled with angry feelings. Not working, my health getting considerably worse, my uncle drowning, my husband’s step-dad dying, not being able to see friends and family properly, cancelling our away wedding, fearing the virus, and on and on. But a funny thing happened, I softened. When I really tried to throw all the negative thoughts out of my brain, new positive ones came flooding in. I started thinking about what I gained this year. It snowballed to the point where the guide rang his bell to signal the end of the reflection, and I wasn’t finished.

Work against instinct, and fill your past with positivity.

What I realized was that I have been caught up in this never ending cycle of negativity. I had been remembering the bad and I constantly recycle those thoughts when someone stops to ask how I am doing. Those thoughts become my belief. ” Wow this year was really crappy because….”, instead of thinking and saying, well the good thing is that… ” I got to hang out with my kids more, and see them grow up”. The problem is that we have all been feeling like we have been thrown in the gutter. So the negativity grows when it is surrounded by more gutter thoughts. It is hard to escape. It is hard to become the one that is looking at the stars.

Chronic illness and Ptsd can constantly make you feel like you are in the gutter where all those around you are glowing except you. I recently had an emotional breakdown, due to my illness spiralling out of control for the past month. I was hit with one thing after another. I have spent a majority of it lying on the floor looking at the ceiling trying to calm my pain or slow my heart rate, or on my knees trying to breathe. Without knowing the cause of the breathing issues, it has been a great source of anguish and I have started to lose my once positive glow. You see, I was one of the golden ones. I had an ability to stay positive, smile and look towards hope and a better future. For every bad day, I just tried to enjoy the good days. But, that positivity started to feel like an illusion, a painstaking process of trying to prove to others that I was ok. The pain gradually starting to unravel my light. The fear dimming out any remaining hopes. The lack of answers extinguishing my flames of positivity, to just a lingering hint of smoke. I was in the gutter. I just didn’t realize it.

However, I knew that there was still positivity lingering in the smoke. The desire to be golden still existed, and I dared not be the one lying in the gutter all year. You see, you can’t extinguish the golden ones hope. No one can. A quote from Robert Holden that has helped me is

“Holding on to grievances is a choice to suffer”

Think about that. By choosing to be angry with someone, or something, or how things have played out, or what you can’t have or used to have, you are making a conscious choice to suffer. YOU are making the choice. No one else is making YOU suffer. You can choose to get out of that gutter. You can chose to change your thought process to one that brings more positivity. You can choose to align yourself with the golden ones. You and only you can do this. So why not try? I don’t know about you, but I am tired of letting 2020 and all the other crap along the way bring me down any more. I need a change.

Making a choice not to suffer, sounds like a good way to begin 2021. Who’s with me!

Learning to find my balance again

Learning to find my balance again

I spent 5 years complaining that I didn’t have enough time for myself. By the time the day ended, and the kids were in bed, I would sit down exhausted and zapped of all my energy that was required to do any form of self-care. My nails would sit with chipped polish for a month at a time, too tired to remove the polish and re-do. My legs, meh i’ll shave them tomorrow. My face looked dry, but man the cream is all the way downstairs, that can wait till tomorrow too. Working out…nope. Meditation, yeah right it would put me to sleep.

Yet, all the while I was stressed. I felt like I was being pulled in every direction except my own. I wasn’t taking care of myself the way I was taking care of my families needs. I would feed the kids healthy food, and myself essentially crappy scraps. I couldn’t see that in order for me to be a better mom, which meant being less stressed, being less short tempered, more giving of time with them, and not so worried about everything else…I had to slow it down. I had to say nope, you know what it’s ok that they go on their IPADS today so that I can go do Yoga and Meditate. (funny the word meditate just auto corrected to MEDICATE…made me laugh….I am sure that is also applicable some days!! lol)

My point is, I was so focused on being the super star mom with a clean house, healthy meals, lots of exercise and activities for them, while making sure they had less tv time, that I was exhausting myself. I wasn’t able to keep up the pace because the same level of care wasn’t being given back to myself. Between working, school and being a super star mom (or so I thought) I had nothing left. .

So I started

So I decided one day to start. I just started, and here’s how I did it. I am sure some would shake their finger at me …but I don’t care! I gave them iPads and headphones and said ….have at it. What I finally cultivated was an hour of silence….an hour without requests, an hour that I could do what I needed to do …once a day…for myself….ME TIME. It felt great. So I did it again….and again…and again. It still feels great. I do yoga, or meditate, read, whatever it means that day. Whatever I need the most that day.

By the time my hour is up, I am refreshed. I feel like a rejuvenated person, and I am no longer short or tired for my kids. I am able to go play with them, or give them undivided attention. I am not too tired or exhausted to do so. My mind is not also wandering away from them, thinking about the things I need to do. I just do them now. Somewhere along the line, it became ok for parents to revolve their life around their kids 24/7. It shouldn’t be that way, and to do that to a child, only sets them up for disappointment and failure when they are older and they don’t get that same attention from society.

Teach a child to be bored! Teach a child to amuse themselves without their parents. Teach a child that it is important to give their parents their own time too. My oldest daughter actually says to me now, hey mom how bout we go play in the play room so that you can have some time to yourself. She’s 5 year old. She sees how good it is for me. She respects my need for that, and best of all, she is ok with it.

And we all need to be ok with giving ourselves more time, and not feeling bad about it. Be a better you first, so you can be a better you for your children and spouses.