Heart Stethoscope

How to Work Effectively with Doctors/Specialists

This is such a necessary part of spoonie life, but it definitely can be one of the worst parts. I am still learning the fine art of doctor-patient relationships but I will share with you what I know so far.

How to Work Effectively with Doctors as a Patient

  1. Understand that doctors are people, too.
    Doctors are not miracle workers, usually. They are human, so remind them about your case if they forget and remember that they are (probably) doing their best.
  2. Don’t expect too much.
    All doctors want their patients to have positive outcomes. It looks good for them if they’re helping their patients so they have a real motivation to give you the best care that they can. That being said, there is very rarely a magic potion to cure your ailments. They feel frustrated and disappointed when your treatment doesn’t work also. If you go in with lowish expectations you will have a better chance of being happily surprised, as harsh as that may sound.
  3. Don’t quote things you read on the internet, unless it is a proper peer-reviewed article.
    This is a definite doctor pet peeve. It is good to research your symptoms and illnesses, but be wary of your sources. Scientific journals can be hard to understand but it is important that you find valid information before bringing it up to your doctor.
  4. Be honest about everything.
    The good, the bad, the ugly. Some of our symptoms and side effects are pretty gross. Whether they be bowel issues or other unflattering situations, it is imperative that you share these and other concerns with your physician. They can’t help problems that they don’t know exist. Even things that you don’t think are important, tell them anyway. The more information the doctor has, the better the potential outcome.
  5. Keep records of symptoms.
    Doctors enjoy this. They need to know when the symptoms started, how severe they were, how long they lasted and what seemed to help them. These records help the doctor identify if they are side effects to medications or if they are a brand new symptom or a new condition altogether. Keep track of these things!
  6. Be a patient patient.
    This is something I’m still working on, as patience is a virtue I may have not inherited. I feel like I’m constantly waiting and always phoning and leaving messages for doctors. It becomes infuriating to say the least. That being said, try to not take your frustration out on the receptionist, nurse, or physician. It may not be their fault, and they will all appreciate your patience.
  7. Kill them with kindness.
    Going along with the patience, even when it may kill you, kill them with kindness. They will likely be much easier to deal with if you are pleasant with them. Remember that you have the power to change not only your day, but theirs as well. Change it for the good. You’ll never lose by being nice.
  8. Thank them in writing.
    Writing a thank you card is always a good idea. If they helped you in a substantial way, it’s always nice to let them know you appreciated their treatment. It’s a classy move that may pay off in the future!

That’s what I have for today! Any other hints you think I should add?
Have a great day! :)

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Fibromyalgia Awareness Day!

Hello Friends, Family, Acquaintances, Awesome Readers,

Before I get into it, please check out the Song of the Week page for an awesome, fighting tune!

I am sitting here with throbbing shoulders, swollen fingers, and an aching head because what I’m about to write needs to be written.

I have fibromyalgia. It is not my only diagnosis but it is the most debated of my illnesses. I’m very lucky that I have an amazing team of doctors that believe in my pain and chronic illnesses enough to diagnose and attempt to treat said conditions. That being said, I know so many friends around the world who are not so lucky.

I have rheumatoid arthritis and because of that I already had a rheumatologist to diagnose my fibromyalgia. If I did not already have a specialist I wonder how long I would have been waiting for that diagnosis. My guess is I’d still be waiting, in agony, for someone to believe in my pain and help me. For a fibromyalgia warrior, or really any person in the world, living in chronic, debilitating pain with no answers and no treatment is not only maddening, it’s downright unbearable.

What makes it worse, is people telling you your pain isn’t real, it’s all in your head, or if you just exercise more or take this magic potion everything will be better. It is real. And there is so much evidence now to back it up that your argument is not only unwarranted, it is wrong and doing far more harm than good.

I remember the day I was diagnosed with fibromyalgia like it was yesterday. I remember what I was wearing (purple shorts and a white and purple t-shirt), I remember the doctors office and the tender point test (ouch), and where I went after and spending the rest of the day in a dumbfounded haze. What did this mean? What really is fibromyalgia?

These questions I’ve had to answer myself through experience, trial and error, and several unsuccessful treatment protocols. But I am muddling my way through it, like so many other fighters out there. And we are all in this together.

One of the things I’ve learned about fibromyalgia is how it can take one good moment and turn it into days of unrelenting pain. It can take one dedicated, hardworking person and turn them into a shadow of their former self. Everything you thought to be true completely flips upside down and you feel like you’re drowning, except nobody around you can tell. It’s absolutely isolating. But thankfully, I know I am no longer alone.

On this day, May 12th, we come together to celebrate our victories over fibromyalgia (however small they may seem to the typical person, we know they are monumental for us) and fight towards awareness, acceptance, research, and treatment. Our battle is not yet over, but united we will continue to push forward!

 

Not my photo! But So True!
Not my photo! But So True!
Not my photo! But heck yes! Fight until the end!
Not my photo! But heck yes! Fight until the end!

 

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Tally-Marks

I’ve Lost Track.

Good Morning!

I’m sorry I’m over a week late for this, but I have updated the Song of the Week page (finally!) and it’s a pretty good one, if I do say so myself!

These illnesses have taken so much from me, limiting me to the point where I feel like a prisoner in my apartment, bedroom, and body.

I have lost track of the things these illnesses have taken from me.
I’ve lost track of the number of times I’ve cursed these conditions, this body, and God.

I’ve lost track of the number of times I’ve said “I can’t do this anymore” and thought that I meant it.
I’ve lost track of the number of times I’ve wanted to quit my life, and thought I would.

I’ve lost track of the number of times I’ve prayed for the pain to end.
I’ve lost track of the number of times I’ve prayed for my life to end.

I’ve lost track of the number of days I’ve been unable to work a job I loved.
I’ve lost track of the number of friends I’ve lost because nobody wants to deal with this.

I’ve lost track of the number of tears I’ve cried and profanities I’ve spewed.
I’ve lost track of medications I’ve taken and the side effects I’ve endured.

I’ve lost track of the plan for the life I thought I would have.
I’ve gained an appreciation for the life I have now.

I’ve lost the need to plan, because I lost the life that could be planned.
I’ve gained friends along the way who have opened my eyes.

And I’m thankful for the journey.

Love,

Courtney

 

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Chronically Vlogging!

Oh hello there, friends!

I know it has been a while and I appreciate your patience!

As you know, the life of a chronically ill person is unpredictable and often inconvenient. Plans made around us are in faint pencil and subject to change at any second.

In exciting news, however, I have begun my journey into vlogging!

It has been a terrifying ordeal but the support I have received has been amazing and overwhelming, so thank those of you who have checked them out.

For those of you who have not and this is brand new information, here are my videos!
Please feel free to comment, like, subscribe, and/or share!

I will be adding a brand new video to this lineup today (hopefully, if the stars align! haha) so stay tuned for that!

Thank you again for your ongoing support!

Love,

Courtney

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A Letter to People who Don’t Think my Pain is Real

Good Afternoon!

As (mostly) usual, check out the Song of the Week page for an awesome recommendation from a lovely spoonie friend!

Dear Friend, Acquaintance, Family Member, Random Person Staring at me with my Walker, or any other person who judges me without knowing anything about me and/or my condition/s and therefore should have no opinion on my medical situation,

This letter is for you.

I usually try to steer clear of you, as negativity is not permitted in my bubble of self care, but alas, you continually attempt to pop my beautiful pink bubble.

I used to think it was easy to avoid you and others like you, but as my medical conditions make it more challenging to survive without the need of mobility or accessibility aids in public and my life revolves around the illnesses more than anything else, we seem to be at an impasse.

I have several chronic, autoimmue, life-altering illnesses, whether you believe they’re real or not. And they are, just to be clear, as years of research and medical documentation support their existence (and I’m not on all of these medications for nothing).  These conditions, illnesses, horrible-things-that-have-happened-to-me are in no way fake, misleading, or caused by anything I have done. I do not choose to be ill and miss out on work, bearing children, or vacations with my husband. I do not want to use a cane or walker around the house or in public (even if they are pretty cute), because in reality, it’s all a huge inconvenience. I do not want to spend hours on the phone arguing with insurance companies, employee benefits, or disability services. I don’t want to be in agony over the sound of birds chirping, motorcycles starting, or my husband trying to hug me. This is not a fun life. But it is my life.

This is my life, and it is not yours. And just because it does not make sense to you does not make it any less legitimate. These are illnesses I didn’t even know existed until they happened to me. But now that I know they do, I am a champion for these causes and for the people’s lives they’ve affected. I do not write this letter for your benefit or mine, I write it for theirs. I write this for my friends around the globe who encounter naysayers and hurtful doubters who make their already difficult lives that much harder. Nobody chooses to live in pain, but you are actively choosing to be ignorant to it.

I’ve heard you say things like “just push through it,” or “why are you in bed still?” or “if you just keep moving,” or one of my all time favourites “if you just take this one supplement your life will be completely different” which shows me just how little you know about our illnesses. And if you know that little about them, you are in no position to comment on how we survive them. If you think that one lap around the dog park is not enough to wear us out for days, you have no idea what we’re dealing with.

I’m sorry if this is coming off harsher than I had intended, but enough is enough. If you cannot stick by us, support us, encourage us, and just generally try to understand what we’re going through, then we’re going to have to cut ties here.
Speaking for myself, I cannot push through these exchanges anymore. I am begging for compassion, and if you are unable to provide that, there is nothing left to say.

Thank you, our friends and family who have shown us unending support and love. It means more to us than we can say.

Love,

Courtney

Oh just another Monday. Last week.
Oh just another Monday. Last week.
Couldn't survive without these two.
Couldn’t survive without these two.

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relationship

How to Have a Relationship in Chronic Pain

Good Afternoon, Warriors!

As usual with a new post, here is the new Song of the Week to empower you and give you strength!

I have to be honest here, when writing these “how to’s” I feel a bit like a fraud! Who am I to tell other people how to do anything? I am no expert in any sense of the word. I am just a girl living with these illnesses, trying to help people whenever and wherever I can. I do have a pretty successful marriage that I believe is in large part due to my amazing husband. That being said, here is how we make it work!

  1. Honesty is key. Both partners need to be straight up with one another at all times. If you’re having a bad (or good) day, they need to know what to expect. If you aren’t up to outings, let them know! Pushing yourself will only hurt you both. Keep it honest about the realities of your conditions. And try to always let each other know what you need. Don’t hold things in until you burst.
  2. Education is Important for Support and Understanding. Chronic pain workshop and education classes can be outstandingly helpful for both parties. Workshops together and separately are vital for understanding. When both of you understand the illnesses and treatment plans you can better work towards a sustainable and healthy future.
  3. Support Groups are Supportive. Not just for the chronic pain warrior, but for the caregivers as well. Caregivers hold a lot on their plate. They feel like they always need to be strong and able to help, but they need help too! It is not easy for them to watch their loved one in so much pain and feel utterly helpless about it. It is important for them to attend Caregiver Groups so they feel supported as well.
  4. Keep the Intimacy Alive! Spouses can feel like nurses if their time is spent arranging pillows, giving medications, and turning on heating pads. It is important to still do “couple things” when you’re up for it! Dress up and go on a date, have a picnic outside, have sexy time! These things are absolutely vital. Orgasms are good for pain relief! That’s an actual fact! Sex and Arthritis Sex and Chronic Pain give some helpful hints when discussing sex in the realm of chronic pain. I know it’s a personal topic and varies from situation to situation.
  5. Keep up with the Inside Jokes and Netflix Binges! My husband and I have really gotten closer throughout these illnesses. I think it’s hard not to, when it’s usually just us here dealing with the day-to-day of the symptoms and realities. Because of this, we have many inside jokes and our own little language basically. It brings us closer as a couple and strengthens our bond. We have a couple things on Netflix we’ve rewatched about a million times (Bo Burnham- What) and enjoy finding new shows to binge on!
  6.  Remember to Appreciate One Another. This is probably the most important. Just be appreciative of what each of you brings to the table. If your spouse takes great care of you, thank him/her. If you book the appointments and are there for morale boost, that’s an important job too! You’re a team. A damn good one, too. Please and Thank You’s are still the magic words.
  7. Find things to do That Aren’t Illness Related. You can never really take a break from these illnesses. They’re chronic. And we all know what chronic means (thumbs down). But if you like to play computer or video games to take your mind off of the pain, or can beat each other at Words With Friends, those are cute options that keep you connected in a non-illness way!

    I hope this was even a little bit helpful! If you have any questions please email me at chronicallycourtney@gmail.com.

    Love,
    Courtney

    *Disclaimer- Bo might not be for everyone. He is a comedian and can be offensive depending on your preferences and tastes*

 

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thanks

A Love Letter To My Illnesses

This may sound weird, shocking, even wrong. Who thanks an illness that, from the outside (and sometimes inside), appears to have ruined their life? I do.

These illnesses have changed my life but I don’t believe they’ve ruined it. And here’s why.

Dear Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease, and Others,

I am writing this letter to thank you for how you’ve changed my life.

Before you I was a selfish person. I went through my life with a sort of self obsessed confidence. I was carefree and eagerly focused on my career and my shopping habits. Gossiping and drama were the center of my days while I should have been aware of the real world instead of my narcissistic universe. I would get enveloped in everything that did not actually matter.

When I began feeling pain everywhere I was angry. I know this sounds like a natural response to a body that is failing an otherwise healthy 25 year old woman, but I was filled with bitterness that was unbecoming of my prior bubbly self. I pushed through, because that’s what I did back then, not knowing that I was further wrecking my already damaged spine. My broken body fueled the drama that was my work (and home) life.

After my first spine surgery I began my Tumblr blog and found my place among the Spooniverse. I had no idea this was even a thing. I had no idea that there were so many illnesses and people like me, suffering with  bodies failing young women and men around the world. It shook my egocentric self to the very core. This was so much larger than myself! Through this I realized there were people in far worse shape than I was! There were warriors fighting courageous battles with smiling faces and I was moved by their spirits.

It gave me faith that I could do that, too. I could smile through my challenges and brighten people’s lives, and open their minds and hearts. I could look outside of my own problems and dedicate my life to helping others get through their days, weeks, and months. I could support and mentor new spoonies like I was (and still am!) supported and mentored by powerful, inspirational warriors!

It was around this time when I took stock of my life. I looked around and fell even more in love with my friends and family. They stood by me through my ups and downs, my good times and bad, my selfishness and my thoughtfulness. It was their love and support that propelled me to where I am now. It was their hours spent arranging pillows and filling pill cases and attending chronic pain workshops. And if it wasn’t for them I wouldn’t be the person I am today.

Throughout this whole experience I have been changed. I never knew how strong I was before you took over my body and made it your own. You have affected every aspect of my life and altered my reality and future. I no longer know what tomorrow will bring, let alone the next month or year, but I know I will get through it. You may be trying to break me, but you won’t. I am loved and supported and cared for by people who I never would have met if it weren’t for you. You thought you were ruining my life but you have enriched it in ways I never could have imagined.

So, dear illnesses. You have changed me. And for that, I am entirely grateful.

Thank you,

Courtney

Also, check out the Song of the Week page for an upbeat jam!

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friends

How to be a Friend to Someone in Chronic Pain

Good Evening!

Branching out from my regular style of upbeat musings on my life, I would like to take this time to provide some helpful hints to readers who are unsure how to be a friend to someone who lives with chronic pain.

I’d like to start by saying that my friends are amazing, and while the majority of them do not have chronic pain themselves they are all wonderfully supportive of my needs.
That being said, I know many people who struggle with making friends who fully grasp the gravity of their illnesses so I am hoping this can be a guide to promote understanding and happiness.

How to be a Friend to Someone in Chronic Pain

  1. We want understanding, not pity.
    When we complain about our illnesses or pain we are not looking for pity. The truth is, we are in pain all the time and the fact that we are not mentioning it all day, every day, means that when we do bring it up it’s worse than normal. We may be bringing it to your attention because we feel bad that we are not able to follow through on plans or so you are aware in case we are out of touch for a little while. We are looking for your understanding and support, not pity.
  2. We may not be able to make plans in advance and that has to be okay.
    Our health is so unpredictable. We never know how we are going to feel from day to day, let alone week to week. We can, quite literally, “pencil you in” for dinner sometime next week with the understanding that if our health is not cooperating we may have to reschedule. We call this a “pain check” instead of a “rain check”. We understand how terribly inconvenient this is and appreciate your understanding more than we could say.
  3. We may not be as available as we would like to be.
    Sometimes we are unable to talk on the phone or text as much as we would love to for a number of reasons. One reason is that talking on the phone can be overwhelming or even painful for some chronic pain fighters. Texting non stop can cause our chronic fatigue to flare and hurt our hands and joints. We would love to chat, however short the conversation may be! We appreciate you checking in on us!
  4.  We’re the same people we always have been, but we’re different, too.
    This may sound contradictory and confusing, and it is for us also. Pain changes people. We’re not the same people we were when we started this journey and our priorities may have shifted a bit, but we’re still the friends you fell in love with. We can rock a Netflix marathon or gossiping session like nobody’s business and chronic pain warriors have the best blankets, pillows, and snacks you’ve ever seen.
  5.  Our bodies may not let us do some of the activities you’re interested in.
    We don’t want to be left out, but we can’t partake in extreme activities anymore. These activities may include concerts, sky diving, marathon running, or day trips to Cedar Point. This breaks our hearts. It kills us to say no, but we’re not being a “downer” or a “kill joy,” we’re just not healthy anymore. Please have fun and we will live vicariously through you! Let us know when you want to chill and colour. We’re down for that.
  6. If you have any questions about our illnesses, ask us!
    It’s not a secret you need to tiptoe around. We’d love for you to ask questions! The more questions you ask, the more we explain, the more you understand and the happier we will all be! We know you may feel awkward asking about the ins and outs of our illnesses, but we are totally ready and willing to answer whatever you want to know.
  7. You may see us arrange pillows and pop medications like it’s our day job. It is.
    Taking care of ourselves is our job. We definitely have a method to our madness, and trust us, all of these things keep us alive and functioning. Yes, we may have more medications than a pharmacy and more pillows than Bed, Bath & Beyond, but each medication and pillow serves a purpose. Bonus points are awarded to friends and family who give us pillows or help us arrange them. It can be exhausting work!
  8. Any offer of help is appreciated.
    We adore helpful friends! Even if it is something small like hanging out with us for an hour, bringing us coffee, or grabbing something on a low shelf, we appreciate it! Larger offers like helping with dinner, helping with household tasks, or errand running is above and beyond! We are so thankful for your support and can’t imagine life without you!
  9. You are the best friends in the world.
    And we love you!

Thank you!

 

Your friendly neighbourhood Spoonie,

Courtney

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Beginning and Letting Go

Good Afternoon!

As usual on Mondays (or Tuesdays, or whenever I get inspired!) please check out the Song of the Week page for a new addition to your feel good soundtrack!

Today, as I was emptying the dishwasher (because we have one now! Way too excited about that) and heading back to bed, I felt the horribleness of self-pity. I was trying to remember my last true “good day” and wondered when things would turn around for the better. I tried to remember every time I had that thought before. How many times do we plan for our next good day rather than make the best of what we have?

Here is where I begin. Here is where I change my way of thinking. Here is where I let go of the self pity, anger, frustration, and negativity. Here is where I alter my perception of my life and future.

This is not to say that I will never experience those feelings again. I’m only human after all. What I am working on is acknowledging those feelings and moving past them. Refusing to wallow in despair about my situation may be hard, damn near impossible some days, but I am a work in progress. Aren’t we all?

So this is my challenge. Today and every day. Make the most of the days I have, because some people aren’t so lucky. Smile every chance I get, not just for myself but for others. Love the family and friends I have, because they are the good in my life. And do what I can with what I have.

Even if I feel absolutely terrible, I want to feel the sun on my face every day. I want to experience my life as fully as I am able.

Our lives may not be what we had imagined, but they are the lives we were given. And we should fight to live them!

To new beginnings!

Love you all so much,

Courtney

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Smiling through the hospital visit. Yay for antibiotics and horrible UTI's.
Smiling through the hospital visit. Yay for antibiotics and horrible UTI’s.

 

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Breaking Up with my Make Up

I feel like I’ve been in a little writing rut as of late. So many things have been happening and I didn’t know if I should share them, or even how to go about stating the mile-a-minute thoughts in an eloquent way.
Nevertheless, I have things to say so I’m going to go ahead and just say them.

Firstly, check out the Song of the Week section for a pick-me-up chosen by my husband! If you like it, go ahead and comment or send me an email at chronicallycourtney@gmail.com!

In effort to speed through the changes that have been happening lately, I will bullet point what I can!

  • I got kicked off of my Long Term Disability Benefits but am fighting it! I have heard from a bunch of other Spoonie folks who unfortunately have been in this situation and I thank you for your words of support!
  • We are MOVING! And by moving, I mean we get the keys tomorrow! We are moving from this three floor townhouse into a beautiful apartment building where we are on the FIRST floor with easy access to the doors, laundry, and lounge room. There is also an indoor saltwater pool on the premises! So excited! But as you fellow spoonies know, this is an exhausting and extremely taxing process on our bodies. All for the best, though!
  • My toe surgery is over but now I feel like there has been a complication. I revisit the surgeon next week so I’ll keep you posted on that.

Now on to the real post….

We have been packing for a while now, clearing out the house of all the things we no longer need or will have room for in the new place, and it’s been a process to say the least. It’s always hard to pack when you’re still living in the place you’re packing! Some things are easy, like I could pack two out of my three drawers of panties (I know, it’s out of hand), but some things were harder to box up. The hardest being my gigantic makeup bag.

If you’ve been following my journey for a while I’m sure you’re no stranger to my relentless selfie taking and posting. As obnoxious as it may seem to my family (I’m looking at you, Michael), it is how I/we chronicle our days/hospital visits/weird reactions or symptoms/new makeup techniques/let the world see how gorgeous we are.  My husband can point to the exact selfie spot before and after I bought my contour kit.

These illnesses take so much from us; more than anyone could ever understand who isn’t in this position themselves. Dying my hair, piercing my ears/nose, getting new tattoos, buying cute leggings/pajamas, and doing our makeup all fancy is how we control our bodies when all other control has been taken away. I can not control when my stomach decides it didn’t like what I ate. I can not control the weight gain from meds when my back makes exercise near impossible. I can’t control when the misophonia will hate a particular sound. I can’t control what textures are tolerable. I can’t control what part of my body will hurt when or how to make it stop. Our lives seem to have been ripped apart before we even knew what was happening.

It makes sense that I’d hide behind these things. And I do. I completely admit it. Before my body got torn apart I was tattoo free with limited piercings and natural blonde hair. I currently am sporting 7 tattoos (2 more happening next month!), 11 piercings and purple hair. I also have more makeup than one person could think necessary. I hide my up-and-coming double chin with clever contour tricks and hide the pain behind killer smokey eyes. It’s the mask I show to the world. But it’s packed in a box now. Purposefully.

I feel the hairs on the back of my neck stand straight up as I think about leaving the house tomorrow with my makeup packed in a box I can’t identify. I feel the anxiety mounting higher and millions of butterflies in my stomach (not the lovey ones). I feel panicked. But I will brave the world tomorrow, fresh faced and ready. Not hiding, but open and prepared to show my true self as I go from one appointment straight to pick up the keys from our new place!

Who knows, this may just be the best thing for me. A little break up from my makeup. Even if it is anxiety inducing, it is good to let my skin breathe every once in a while, right? But don’t fret, my pets, I am in no way breaking up with my makeup for anywhere close to good. As soon as that box is unpacked  I’ll be back to my selfie taking self in no time!

Do you have any things like this? What is your mask?

Love,

Courtney

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New rook piercing in my ear and full on smokey eye

 

Makeup free
Makeup free

 

 

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