I’m Still Here

By Lukasz Szmigiel
It’s been a long time, hasn’t it? I never thought that I’d end up needing, or choosing, to step away from this blog for so long. I had come to rely on it so heavily to help me cope with the various aspects of living with a chronic illness, and it’s been so incredible to be able to vent on a platform that gives me access to so many wonderful, supportive and understanding people. I really have missed that, and all of you so very much.

I never intended for my hiatus to be so long, but the longer I stayed away the harder I found it to come back. So many difficult things have happened since I last wrote and I haven’t known where to start. While some of those difficult things have been to do with my illness, most of it involved my personal life. I’m so used to being able to honestly and openly talk about all of the difficult, painful things that my illness results in on this blog. But, when the hardest things that I was facing became within my personal life – where there’s the need to protect and respect the privacy of everyone else involved – I found it hard to work up the desire to post. That was what I wanted and needed to vent about the most, so instead of having to pretend that those things weren’t happening I ended up just preferring to stay silent entirely.

I do apologize and regret not letting everyone know where I’d been for so long and that I was alright – not that I’d expect people to be sitting there consumed by it, of course. But nonetheless, I think I owed it to you to have explained my absence after all of your continued support over the years. To those of you who sent me emails and messages asking if everything was alright, thank you so much. You never picture your absent having any impact or even being noticed, so, receiving these messages was really touching and appreciated.

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It will take me a few posts to explain a bit of what’s happened (medically) in the past 6 months, but I do intend to catch you all up very soon. But, first off, I was asked by the American Recall Center to participate in their November Awareness “Talk About Your Medicines” campaign, by writing a bit about my personal experiences with various medications. I’m really honored that they asked me to be involved and this is a really good thing for me to write about having been tried on so many different things since being diagnosed with my illness. That post will be published tomorrow. I invite any of you who’d like to participate to either leave a comment about your experiences – good or bad – or, if you’d like to guest post: email me at tissue.tales@hotmail.com.

I can hardly believe so much time has passed; the last 6 months seemed to have somehow gone by almost in the blink of an eye. Maybe it’s because so much has been going on. I’m really looking forward to picking up where I left off 6 months ago and I sincerely thank you all for sticking with me during the hiatus. You are, without fail, what makes this blog such a joy to keep.

'Til the Cows Come Home By Kenneth Thewissen

Much love to you all.

– Katie

There are days.

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There are days in life that have the potential to permanently alter the course of your future for the better; days that could make some of the things that you live with easier from that point onward; days with the ability to get the ball rolling towards some positive, long overdue change. Yes, there are days like that.

But sometimes those days instead end only with missed opportunity; another lengthy appointment with disappointment, and another added mark on your overflowing wall of let downs and discouragements. Those days that, instead of giving you a piece of your life back – no matter how small – end with you being left to go back and suffer endlessly, in the same painful reality, once again feeling defeated and abandoned by the only people with the power to truly make a difference in your life.

The 8 long months leading up to that day passed me by in slow succession: cloaked in a bleak and melancholy air that hung heavy over and all around me. The weeks were almost entirely marked only by the increasingly debilitating and all-consuming pain in my lower spine that brought about the need for that day in the first place. Things were consistently deteriorating right before my eyes, and I was frighteningly often struggling desperately just to pull myself out of bed each day.

While time passed and I waited, I forced my mind not to linger too long or too often on the possibilities of that coming day, which sadly – experience has taught me, over and over – would most likely end in the exact disappointment, frustration and – should I allow it – devastation, that it did. Or, worse than letting my mind focus on the fear of things ending badly, I couldn’t let the hope in. If you have hope it only hurts so much worse when that hope is shattered. I couldn’t take the crippling pain of getting your hopes up and then having them destroyed, on top of everything else.

But, I did get my hopes up a bit – I couldn’t help it, it’s all that I had to prop me up. And so, as hard as I tried not to let it, some hope did manage to find it’s way in. But, I think that was what had carried me these last months through all of the pain: that little bit of hope that maybe someone was about to help find a way to lessen it for the first time, and that maybe this person would finally be the one. My fears about hope ended up being perfectly reasonable in the end – despite not having all that much of it to begin with, it was still a devastating thing to have and then lose.

I’m back at home now, back to my reality, and that day has gone and passed. The pain continues on in the same ever-worsening way that it has for the past 10 years – exactly one half – of my life, while my body continues to fall apart in a constant string of new and unexpected ways. And that day is ever further behind me, without having given me anything to help carry me forward. And now? Sometimes, I don’t know how I’m going to be able to. But yet, somehow I always do.

Sorry it’s been so long again, things have been tough.
Lots of love to you all. ♥

-Katie

Struggling & Taking Notes From an Oak

Note: this is a bit of an old post/journal entry, re-worked to explain how I’ve been feeling lately. I know I’ve been absent and as the title suggests; it’s because I’m struggling. With pain, with sleep, with figuring out my purpose in life.
That being said, I do miss you all dearly and hope to be back regularly soon. Don’t give up on me yet.

Much love to you all. ♥
-Katie

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Resilience is an intriguing thing. It can be exceedingly difficult to come by while simultaneously appearing in places – or people – you’d least expend to find it. The way I see it, there are two basic avenues to take when handling tragedy and hardship (though, many facets here and there and in between); you shut down, break down and never truly recover; or, you grieve, accept and move on. I’d like to say that I have always chosen the latter, but in all honesty, I often find myself stuck between the two; fighting to find a balance without falling into nothingness. This often leaves me suspended, neither shutting down or moving on. Sort of just drudging my way through life.

I find myself oddly nostalgic now-a-days, and I say oddly because I always pictured nostalgia and reminiscence to be had many years later in life, when so many things have happened and so much life has been lived. Yet, when so many of my peers are living the brightest days of their lives and finding their places in the world, I instead remain vastly lost and stunted, wrestling with myself daily for the will to keep fighting for a life that has taken me places I never, ever wanted to go. I have no plans in regards to my future, no idea which roads to turn down or even how to get to them. One thing I don’t plan on is feeling this way forever. I hope – in fact it may be the very thing keeping me sane – that eventually the bitterness I feel, the sadness and the hopelessness, will depart and leave me more able to live this life. The physical pain is debilitating in many ways and that’s not going to ever truly go away, but my emotional pain is just as, if not more so, crippling in nature.

It’s odd to be writing about myself in this way. Through my words I could come to recognize myself as some angry, bitter, miserable thing to be around but in truth that’s not what I’m like on the outside and not hardly entirely how I feel on the inside. I love, I laugh, I feel the joy when it’s there to feel – at least most of the time. And my internalization of my feelings – if you can even call it that once it’s been written and made public – is what allows me to do so. I can keep the bad to myself for the most part, while still being me to the best extent that I can manage.

You’d think that keeping so much to yourself would cause you to burst, and there may yet come a time that I can no longer keep these things in my head. And every once in a while the flood gates do begin to part and I’m no longer able to carry on as if nothing’s wrong. These are the rare occasions that I lose it. It being my reserve, and have a bit of a nervous breakdown. It always seems to happen the same way; a negative event will trigger it and once the tears begin flowing there’s no going back. I turn into this shattered, weak, shell of myself. Broken beyond what I feel is even remotely repairable. There’s no going back are the whispers of the thoughts that manage their way in through the grief, I can’t do this anymore. But, such is the intrigue of coping; once I’m able to pull myself at least adequately back together, things seem to hour-by-hour or day-by-day transform back to the way they have been, and I carry on.

“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun.”
– Napoleon Hill

Happy New Year!

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As per usual my post-holiday update came a little later than I’d intended. But here it is, better late than never! :)

Christmas was really good this year, if not a bit hectic – not in a bad way though. My brother and his girlfriend came from Alberta to stay with us for the holidays  and it was nice to have them here for Christmas. It had been quite a while since the last time I saw either of them. I guess I can officially announce that I’m going to be an auntie this April! I’m really excited, but I wish that they lived closer. As it is now with my health issues and my brother’s job we only get to see each other a few times a year.

Never one for good timing; I spent the entire holiday season in the midst of a major chronic illness flare. I don’t know why it happens but it seems to be a fairly common thing with people who have tissue disorders; I go through these bouts where my pain and dislocations dramatically increase for a while before eventually calming down again. I also spent the week of Christmas in the midst of one of my insomniac phases and sleep was not a friend of mine. Now I’m the exact opposite; no matter how long or often I sleep I’m still so tired that I can barely keep my eyes open. Today I feel like maybe it’s lifting and I’m hoping that it was just a bit of the flu and I’m starting to get over it now. I’d like a happy medium, in between the two sleep extremes.

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I ended up with another painful rib dislocation on Christmas evening. My ribs had been really loose and sore all day but playing with (actually, more like being jumped on by) my little cousin seemed to seal the deal. Next time I think I’ll have to be a little more stern when it comes to not letting her be so rough with me. I hate being a killjoy and usually end up trying to ignore my limits instead, which I honestly prefer. That time I paid for it though.

I was really sad and bummed out about the whole thing and the amount of pain that it caused. Of all the days that it could have happened it just had to be on Christmas. And as always with dislocations, I was afraid of how long it would last this time. Thankfully my pain medication helped quite a bit and the major depression that I felt about going through another round of rib dislocation lifted. Luckily for me it went back into place while I was sleeping after only a few days instead of taking a few weeks like it has in the past. Yay!

I didn’t get any family photos this year like I had wanted to do but there’s always next year. I can’t believe it’s 2014 already! It feels like time is just flying by without me sometimes. I spent New Year’s eve enjoying some mellow time at the house listening to music, cooking some pizza and un-decorating the tree. Aside from my sky-high pain levels I quite enjoyed myself. I think my flare-up is finally passing and my body seems to have calmed down quite a bit.

There was more that I wanted to say but I think I’ll have to save it for next time because I feel a huge wave of sleepiness coming over me and my thinking was scrambled already. I’ll post again soon, for now I really just wanted to get this published and say happy 2014!

Love you all and as always; thanks for everything! ♥

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

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

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.

Giving thanks.

Fall Leaves Wallpaper by photonate.com

Hi everyone, happy Thanksgiving! My posts have been kind of melancholy lately so I wanted to take this opportunity to talk about some of the things that I’m thankful for this Thanksgiving day. It’s so easy to get hung up on our hardships and forget about all of the blessings in our lives.

First of all, I’m so thankful to have such a wonderful mom by my side, I’ve said it before and I’ll say it again; she’s my angel. And, I’m so grateful for those amazing people in my family who are so loving and supportive, as well as my best friend JB, who’s stood by me for many years now, through thick and thin. I’m also thankful for my cat who has been an enormous comfort (and cuddle-er) to me for most of my life.

I’m eternally grateful to live in a country where I don’t have to dread the cost of surgeries, hospital stays and doctor appointments. I’ve never had to bear the burden of the cost of those things and how it would impact my parents and my future. And more than that; I’m thankful to live somewhere that grants me access to those things in the first place.

I’m thankful to have food, shelter, running water, electricity and heat. It’s easy to take these things for granted so I try to always remind myself how lucky I am to have them. I’m thankful that I live in a country with admirable human rights, where I don’t have to fear each day for my life and freedom.

I’m so, so thankful that I still have my vision. It may not be what I had hoped but I truly treasure having it at all. The things I’ve gone through with my eyes have really taught me not to take sight for granted. I’m thankful for art, music and writing, they all give so much meaning and joy to my existence. I can’t even begin to imagine a world without them.

Last but certainly not least, I’m super thankful for this blog and my amazing online family (you guys!). You enrich my life and help get me through some pretty heavy stuff. I’m so lucky to have such incredible people in my life and I thank you all from the bottom of my heart!

Much love to you all. Have a happy Thanksgiving. ♥ xx

10/8/2013

Bangkok Ice Age by Mike Behnken

Bangkok Ice Age by Mike Behnken

Hey everyone! Nothing exciting to report today. I haven’t been getting much sleep lately so my brain’s not too on point. Hopefully today I’ll get some more drawing done than I have been. I’m making some progress with this one, slow but sure. I’ve been trying out some new techniques, one of which is using some old unloved paintbrushes for the blending, in combination with the shading stumps and q-tips. It seems to work really well!

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I hope you’re all having a good day. The sun is finally shining here, it looks beautiful on top of the golden leaves. It makes me wish I knew how to paint!

http://www.youtube.com/watch?v=rzniLUP37bg

08/08/13

I’ve been out of commission (blog-wise) for the past week or so; mom and I were up staying at my grandparent’s house while they were out of town.  Which gave me the perfect opportunity to indulge in picture taking – my grandparent’s built their house on some really beautiful property.

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