Better. Much better.


Hi everyone! Sorry, it took me a little longer to write an update than I had planned. But, I’m ecstatic to say that my bladder is now, after slowly but steadily improving over the past few days, almost completely back to normal. I am so, so happy that it corrected itself eventually and that I didn’t end up in the hospital from it this time. It’s odd how much you take these strange, little day to day things for granted, until something messes it up and reminds you how lucky you are for it. Things like being able to eat, walk and yes, even empty your bladder!

So, that was my early Christmas present! Well, that and I got my Tommie Copper long sleeved compression shirt and gloves in the mail yesterday. The compression provided while wearing them is supposed to help stabilize and support muscles (joints too, I’m hoping) and improve pain for a lot of people, while the copper that the clothing is infused with has also long been thought to have positive medicinal effects. I’ve heard really good things about them from others with connective tissue disorders and chronic pain so I thought I would give them a try.

As with anything I get online, I was worried about them not fitting properly, especially because of the way their size chart is set up; it doesn’t offer any custom options for the clothing as far as body shape and height, it just takes into account your measurements width-wise, so I was pretty sure it would be tailored to someone of average height and way too short for me. But, I was super happy to find that the shirt is super long and easily reaches my lower back where the majority of my back pain is.

Because of the material the clothes are made out of, a single size can work for a really wide array of heights or particular body shapes. Though, that being said I’m not sure what effects – if any – the differences would have on the amount of compression the clothing provides. I will definitely do an update letting everyone know how they work for me in case anyone’s interested in trying them out. If they work well I’ll hopefully be able to get the pants and socks too.

Anyways, thank you all so much for the continued comments and support. Sorry to all of my fellow bloggers for the lack of reading I’ve been getting in lately. Hopefully I’ll be stopping by all of your blogs and catching up soon! I hope you all know how much you mean to me, always.

In case I don’t make it onto my blog anymore before the 25th: Happy holidays to you all!! I hope everyone has a wonderful Christmas!

Christmas by Joe Buckingham

Much love and Merry Christmas. ♥

– Katie

The minutes pass like hours.

Nightshade by Marc

Well my dear readers, today has been one long miserable day to say the least. I woke up at around 5:30 am or so with my signature headache and the overwhelming urge to vomit. I hadn’t hardly had anything to eat so there wasn’t really anything to vomit up but the waves of intense nausea and stomach spasms kept coming. This cycled on about 3 times, at once per hour and every time was worse than the last. Please make it stop; please don’t make me dislocate anything are the thoughts that kept running through my mind.

I never thought I’d miss my old headaches. But, to have a headache that’s so severe in it’s throbbing and overall pain that just turning my neck makes me cry out, then having to run to the bathroom and then traumatize my body with the vomiting that follows, is just about as miserable as it gets for me. And to make it even worse, I can’t keep anything down so any type of pain relieving medication is off of the table.

I was only finally able to take my medication a bit ago and every inch of my body was screaming at me for it. My headaches never used to come with nausea at all and now all of a sudden every severe headache I get the nausea isn’t far behind. I’ve thrown up more in the past 2 years than I ever had in my entire life.

I’m so relieved that it’s eased off now. The nausea has lifted and the headache is more background noise than anything. I always feel so exhausted and kind of hung over after these episodes, so I’ll probably be in bed early tonight.

Thank you for listening and much love.

xx

-Katie

Up and about.

Stunning picture taken by Jim Greer @Flickr

Hi to all of you beautiful people. Sorry that it took so long for me to update, I’ve still been having a pretty rough time pain-wise. That being said, my pain medication was upped last week and since then it’s been getting a bit better. Yesterday I was even able to go buy some (desperately needed) new pairs of pants after my doctor appointment. It feels good to accomplish things – no matter how small – after barely being able to make it out of bed for a week.

I’m hoping that things will continue to improve and I’ll be able to lower my medication back down soon. For now I’m mostly just biding my time until I can see the neurologist and maybe get some treatment options for my spine.

I want to say thank you, again, for all of your wonderful comments and emails of support. You all have such amazing, kind hearts and you really do mean the world to me.

Sadly, I haven’t been able to do too much drawing lately but I have started a new piece that I’m really excited about. I’m trying some new things with it and attempting to use my prismacolor markers. On that note, I got a new OTT-Lite lamp with a magnifying glass and I must say, looking through it is like looking into a whole new world! As most of you know I don’t have very good eyesight but with this new lamp I can actually see what I’m doing on an entirely new level! I didn’t know just how poorly lit my work-space was before now.

It’s really nice to have a hands-free magnifying glass too. Before I would just have a pencil in one hand and the magnifying glass in the other which is a bit of a pain when you need your free hand for other things.

I’m not going to post any pictures of my new drawing until it’s all done. I want it to be a surprise. :)

Much love to all of you.
And thank you for everything. xx

I’m tired…

More Dead Flowers by Bill Gracey

I’m tired of leaving my doctor’s office and coming home to the reality that I’m still going to be in loads of pain all day everyday.

I’m tired of waking up every hour of the night and realizing how much I’m hurting and how hard it will be to fall back asleep like that, only to do it all again in an hour.

I’m tired of finally believing we’ve gotten somewhere with my pain management, only to soon realize that I’m basically where I started.

I’m tired of being given all these fantastic ideas on different types of exercise that can actually help those living in chronic pain, while instead I’m being left in so much pain that I’m not sure how I’m going to make it out of bed at all.

I’m tired of getting up each day and not having the slightest clue how I’m going to make it through the entire day, never mind how I could possibly enjoy doing it.

I’m tired of knowing that someone who doesn’t suffer like I do 24/7 is the one who has the power to make my life more bearable, but doesn’t.

I’m tired of doctors who think that only treating “about 30%” of my pain is enough, when I’m only 20 years old and will have to spend everyday of the rest of my life with it.

And most of all, I’m tired of fighting so hard for so little.

Pain in Canada and the need for a national pain strategy.

First off, I want to thank all of you for your support during this National Pain Awareness week! I’m thrilled to say that Brittany’s story – deservedly –  brought in the most traffic I’ve ever had on this blog! Go Brittany!

Now, back to the reason I’m blogging tonight. I know that I’ve posted some of the following facts from the Canadian Pain Coalition before but here they are again (just as they appear on the website) for my new followers and those of you who haven’t seen them. It gives some startling insight into just how many people are directly impacted by chronic pain in Canada alone.

Pain in Canada Fact Sheet

• Although we have the knowledge and technology, Canadians are left in pain after surgery, even in our top hospitals
• Only 30% of ordered medication is given, 50% of patients are left in moderate to severe pain after surgery and the situation is not improving (Watt-Watson, Stevens et al. 2004; Watt-Watson, Choiniere et al. 2010)
• Growing evidence has identified that many common surgical procedures cause persistent post-operative pain that becomes chronic (Kehlet, Jensen et al. 2006)
• Pain is the most common reason for seeking health care and as a presenting complaint accounts for up to 78% of visits to the emergency department, recent research continues to document high pain intensity and suboptimal pain management in a large multicenter emergency department network in Canada and the United States (Todd, Ducharme et al. 2007).
• Uncontrolled pain compromises immune function, promotes tumor growth and compromises healing with increased morbidity and mortality following surgery (Liebeskind 1991)
• One in five Canadians suffer from chronic pain, children are not spared and the prevalence increases with age (Moulin, Clark et al. 2002; Schopflocher, Jovey et al. 2010)
• Many cancer and HIV survivors have greater quantity of life but unfortunately a poor quality of life due to chronic pain conditions caused by the disease or the treatments that cause irreversible damage to nerves (Levy, Chwistek et al. 2008; Phillips, Cherry et al. 2010)
• Chronic pain is associated with the worst quality of life as compared with other chronic diseases such as chronic lung or heart disease (Schopflocher, Jovey et al. 2010).
• Chronic pain costs more than cancer, heart disease and HIV combined. Estimates place direct health care costs for Canada to be more than $6 billion per year and productivity costs related to job loss and sick days at $37 billion per year (Phillips and Schopflocher 2008; Schopflocher, Jovey et al. 2010)
• People living with pain have double the risk of suicide as compared with people without chronic pain (Tang and Crane 2006)
• A recent review of opioid (narcotic) related deaths in Ontario, identified the tragic fact that pain medication related deaths in Ontario are increasing and that most of the people who died had been seen by a physician within 9-11 days prior to death (emergency room visits and office visits respectively) and the final encounter with the physician involved a mental health or pain related diagnosis. In almost a quarter of the cases the coroner had determined that the manner of death was suicide (Dhalla, Mamdani et al. 2009)
• Veterinarians get 5 times more training in pain than people doctors and 3 times more training than nurses (Watt-Watson, McGillion et al. 2008)
• Pain research is grossly under-funded in Canada (Lynch, Schopflocher et al. 2009)

Here are a few things that you can do to help:
Find your member of parliament and write them about the significant public health issues chronic pain in Canada presents.
• Volunteer with the Canadian Pain Coalition, click here to learn more.
• Spread the word about chronic pain on social media.
• Hang informative posters in your local doctor’s offices and hospital lobbies.
• Ask for permission to operate an information booth at your local hospital.
• Contact your local paper about doing a story on chronic pain in Canada.

Call to action

We haven’t yet been successful in getting the federal government to implement a national pain strategy in Canada – the main reason behind the Canadian Pain Summit. But, with continued effort, hopefully we’ll be able to accomplish this in the near future. The pain strategy aims to improve and target 4 key areas in relation to chronic pain: awareness and education; increased access to best care practices; enhanced pain research capacity; and ongoing monitoring of delivery of care, patient experience, quality of life and level of function. 

Clearly, there are so many things that need to be addressed in order to improve the lives of those with chronic pain. It’s a very complex problem and it’s not going to just disappear with a few simple fixes by a few specific people – it’s so much bigger than that. But, I can say having met some of the members of the Canadian Pain Coalition as well as Sandy Smeenk of the ILC Foundation, that we are extremely lucky to have such dedicated, compassionate and hardworking people out there, fighting so tirelessly to make change. I can’t even begin to thank them for all that they have done and continue to do for not only me but all of us.

I never could have imagined just how much sending in that essay to the faces of pain writing contest would forever change my life. If I hadn’t done so I never would’ve met all of these incredible, life changing people.

Brittany’s Story

I’m really excited today to feature a guest post by Brittany, an incredible young woman (and fellow Canadian!) who has Ehlers-Danlos Syndrome, in honor of National Pain Awareness Week. I was first connected with her through the amazing Sandy Smeenk of the ILC Foundation and have been lucky to have her in my life ever since. She does a lot for other people living with chronic pain and has been a deeply cherished source of support for me.

Brittany

My name is Brittany Crichton and I am 24 years old, living with Ehlers-Danlos Syndrome and the many other complications and side diseases that come along with it.

It’s hard to say how my pain started because I always remember it being there. I remember people always giving reasons for it like maybe it was from gymnastics, it’s just growing pains, etc. As I talk about the topic of pain with my friends I realize that I can’t remember a day that I’ve woken up and not been in pain, or had my pain level lower then an 8 out of 10. I can’t remember what my life use to be like, and it is sad that this has become the norm for me.

From the age of 18 my symptoms got progressively worse, and at the time we had no idea I had EDS. I went from hospital to hospital, doctor to doctor and had thousands of tests done only to be told they had no idea what was wrong. It was so hard trying to explain to doctors what I was feeling, and for them to brush me off or just send me to another doctor because they did not want to deal with it. Finally, at the age of 22 my family and I made our way down to the Mayo Clinic in Rochester Minnesota and was finally diagnosed with Ehlers Danlos Syndrome.

It is hard for people to manage my pain because I do not absorb pills like a normal person, so it takes a higher dose to make a dent and nothing makes an impact or is able to take the pain down. It was very hard work but I have finally learned to cope with my pain being at an 8 everyday thanks to physio and my naturalpath. When my pain does escalate that is when I have to go to the hospital to help get it under control.

My life has dramatically changed since I started getting more symptoms and the diagnosis of EDS. The life that I wanted isn’t the life that I can have. I wanted and had my dream career only to have it taken away. I cannot go out and go to a party with my friends without suffering major consequences for it. There are times when I think is this really my life, why am I still here living in a life like this? But then I stop and think, I am glad it is me and not anyone else in my family, or my friends because I know I can handle it.

At first I was seeing all of the negatives that came from this disease, but then I had to look at it from a different angle; look at the amazing people I’ve met from having this disease, people who have the same disease and can relate. I am making a difference in the next generation of children living with chronic pain and rare diseases, and if I didn’t have Ehlers who knows who would be doing those things for these kids. EDS has changed my life but it’s not all bad. That is why I started my own website to show that; yes, even though I’m living with this painful disease, there are good things that can come from all of the bad if you look at it from a different angle.

Peer support is very important and I am getting in contact with people all over the world and it’s amazing. I am so thankful for that, and thankful because I would have never have been in contact with Katie Robertson otherwise.

So remember on those painful days reach out to others who feel the same way and who are going through the same, because we are all here for each other.

Click here to visit Brittany's website.

You can visit Brittany’s website here and follow her journey through her blog here.

Hello November and Pain Awareness Week!

November snow by Anil Reddy

Hi everyone! Sorry it took me a week to post! Today is the start of “National Pain Awareness Week” here in Canada. I’m hoping to feature some guest posts from other individuals who live with chronic pain in order to raise awareness (anyone who’s interested can email me katie.robertson@live.ca). I’m also going to be re-posting from my Canadian Pain Summit trip and speech and talking a bit about how things have started to changed here following the summit.

I finished the poster I’ve been working on for the ILC Foundation tonight. As far as I know they plan on publishing it to coincide with awareness week. I’ll be putting it up on the blog as soon as I can. I’ve got a few drawings here to finish up and then I’m hoping to blog a drawing challenge that I found. It sounds like loads of fun and I’m really looking forward to it.

As for how life is, this past week was pretty unpleasant. I’ve spent most of it with a horrible headache and the accompanying nausea. Most of the time all I feel like doing is laying down but my back disagrees with that notion. A few days ago one (or more) of my ribs dislocated, much higher up than usual. I could still bend where as when the lower ones are out I can’t. But, this one being so high up made it unbelievable painful to breathe. It almost ended with a trip to the hospital but that usually doesn’t do much good so I just tried my best not to breathe too hard or move the wrong way. It seemed to make something in my shoulder and collarbone go out a bit as well. Or maybe everything was just spasming because of the rib. Lucky for me the dislocation only lasted about 12 hours this time instead of the couple of weeks it took to go back in last time. I’m really grateful for that. 

I had an ultrasound last week on my gallbladder, kidneys, liver, pancreas, appendix, bladder, stomach intestines and aorta. i’m not sure what the majority of it was ordered for apart from to check on my gallbladder polyp but I’m glad my doctor’s checking on things. I haven’t heard back from them so I’m hoping that’s a sign that everything looked good. The ultrasound itself went alright aside from my ribs not taking it too well and the technician telling me that “pain is good because it lets you know you’re alive” when we were discussing my chronic pain. I’m going to venture to guess that whoever first uttered that phrase hadn’t experienced a whole lot of suffering in their life. Oh the things I wish I’d said in response!

Anyways, happy November to you all! Hope your October was enjoyable! xx

Some drawings, some ramblings.

Sunflowers for the friends by Claudio.Ar

It’s been almost a week since I started the morphine and I have to admit, it’s not working as well as I’d hoped. That being said it is an improvement from before, and it’s certainly making my nights a lot more bearable. Perhaps it’s a matter of proper dosing. The fact that I’ve been getting some sleep is a miracle in itself. Spending a day with pain is a lot more bearable if you’ve gotten a decent night’s sleep. I’m tolerating the morphine really well in regards to side effects. The ones I am experiencing are the same as with codeine, only slightly stronger. But, no nausea or vomiting which is what I was the most worried about, so yay! I have another doctor appointment Friday morning to discuss how the new medication is going.

1014031502
I’ve been doing some more drawing lately, which makes me happy. I had started drawing this eye but my experiment with colored pencils went very wrong and I ended up having to throw it away. Note to self: don’t do a lot of the work before you try out something new. Experiment first so that if you screw up you don’t throw away something you spent a long time working on. That should have been a no-brainer but alas, at least I learned my lesson!

IMG_3296
As for this drawing, it’s finally finished! I really like to have something like this to work on when I’m bored or fidgety. I pretty much always have one on the go. There’s not too much pressure not to screw it up because it was always meant as more of a doodle in the first place. Then I don’t have to avoid it when I’m not feeling good or lacking sleep for fear that I’m going to muck it up. Muck away!

I was in the midst of a Doctor Who marathon when I started this, that may explain the robotic eye appearance. You’ll undoubtedly notice the pen smears everywhere, I’m terrible for dragging my hand through the ink before it’s dry. I’ve looked in the mirror to find pen on my face many times this week and it always makes me chuckle.

Much love everyone, hope you’re having a great week! ♥ 

Medication update.

Sun peeking through a perforated leaf by mhx

Well I’m relieved to say that the doctor appointment went really well. She was completely understanding about the amount of pain that I’m in and how difficult it’s been. She also said that as far as pain medication goes codeine is near the bottom of the list in regards to it’s strength and efficiency in managing chronic pain. She had said that she wanted to take me off of it and put me on Dilaudid instead. I do usually have some dilaudid on hand for unbearable pain and it works really well on my back. The bummer of it is that it makes me so sick and gives me such bad rebound headaches that taking it everyday sounds just as unpleasant as not.

So, instead she wants to try me on extended release morphine to see how and if that works. My body can be really difficult when it comes to medication so there is a chance that I won’t be able to tolerate it, but fingers crossed. I have another appointment next week to see how it’s working and talk about alternatives if it isn’t.

I’m a bit sad that I’m at a place in my life where a pain medication like morphine is needed. But I’m also very relieved at the prospect of life being more livable again, and afraid that it’s not going to work. The extended release medication sounds like a huge improvement to me. Not only is this stronger but it lasts longer so that maybe I can function properly during the day and start getting some sleep again at night.

Overall, I’m feeling really hopeful right now. Maybe I can get my life back a bit. :)

Hugs everyone. xx

Doctor appointment day.

gloomy forest by gorchakov.artem

Things change today, one way or another. I’m starting this post before my doctor appointment, I’ll post again afterward so I can blog about how it went.

I’m not as gloomy about the thought of upping my medication as I have been. I guess the pain is just too much now that it makes me feel option-less. Just getting through the day lately has been an enormous challenge and it’s exhausting. I wake up in the morning after another largely sleepless night and feel utterly melancholy at the thought of doing it all over again.

I’ve been spending most of my days this week sitting, hunched over forwards, because it’s the only way I can lessen the pain in my back. Of course it’s uncomfortable in a dozen other places but it’s the best I can do right now. I can’t stand very long at all before the pain is nearing unmanageable. 

Thanks again for all of your support! It really does mean the world to me. I’m hoping things turn around soon, I’m tired of the negative posts. I’d like to have something happy or uplifting to say! Hopefully soon, yeah? :)

Note: I know I just posted this song (with it’s official video) but afterwards I found this amazing animated version by an incredible artist named Ryan Woodward. I love it!!