20160607_105504

The Ugly Flare Thoughts

We all have them.  It’s okay to admit that.

For me it feels like every other week is a flare. I’m not even sure how that is possible, but it is and it’s not fun.

I’ve begun jotting down some of the thoughts that go through my head when I am stuck in bed riddled with pain. Maybe you can relate?

This is it. I’m going to die. This pain has to mean I’m dying.

How is this amount of pain even possible?

This is it.  This is my life now.

How many heating pads can I have on how many body parts at once?

Am I maxed out of meds now? Or can I take more?

My bed and my body pillow have taken me as their own. We are now in a polygamous relationship and I’m okay with it.

I feel like my teddy bear is the only one who gets me.

I can no longer cry. My eyes are swollen and I have no more tears left.

When was the last time I showered?

I’m not going to shower today.

I don’t remember what outside looks like.

There is an outside, right?

Life is pain.

Breathing hurts.

Either I sleep all day or can’t sleep at all. There is no middle.

There is no comfortable position. There is only toss and turn and thrash and cry until you eventually pass out.

Why is my skin so uncomfortable?

When was my last good day? I had one at some point, right?

How long have I been in bed? 10 minutes or 10 days?

Come on, Netflix, I’m f***ing here! I don’t need this shit right now!

There will be another good day. There will.

Read More

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! :)

Read More

IMG_20160408_090951

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.

Read More