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! ♥

Hello 2013

I just realized I haven’t posted anything since before the new year!

I hope you’re all well and that your holiday season was filled with love and joy. I haven’t been writing much at all, partly because I hurt my back and it was getting to the point where I could barely make it out of bed without screaming out in pain. It’s improved enormously in the last two days though, so I’m not complaining! In fact I’m quite happy about it!

Mentally I’m in a reasonably peaceful place right now. I feel hopeful that this year will be better than the last one. I have a list of things that I’d like to accomplish by the end of 2013 that I’ll post as soon as I’m finished. Some of my goals may seem trivial but sometimes even small achievements seem major when just waking up can be a challenge.

On a more somber note: our Marfamily (Marfan-family) as we’ve fondly come to know it, has recently taken a very painful and heartbreaking blow. One of our beautiful, precious Marfan babies; Teddy, has passed away. He was not even a year old yet and he had already endured two heart surgeries. If you have prayers to spare I ask that you direct them toward his family, whose pain I cannot even begin to imagine. If only words and prayers could ease such a pain for them. My heart, love and thoughts are with them at this time. And Teddy, you remind me to be brave and to cherish my moments on this Earth.

Winter Sky by Anna Fischer

Merry Christmas!

Merry Christmas to my beautiful, wonderful online/blogger family. You all bring such joy into my life and I thank you for that. I hope that you all have a wonderful December 25th, and find happiness in whatever it is that the day holds for you.

As for me, I’m hoping tomorrow is as pain-free as possible for not only me but all those that I love too, especially my mom. We’re going to spend Christmas at my maternal grandparents with much of our family, as we do every year – my very favorite thing about the day. 

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Sleepy cat, helping me wrap presents of course.

Love, joy and peace to you all.

-Katie

It’s Thursday already?

Finally, an update! How is it that the days seem to drag on forever yet at the same time they’re going by so ridiculously fast? I had meant to do an update last week!

I’ve been feeling rather introspective, perhaps it’s a day for it because my good friend Benjamin seems to be feeling the same way! Actually, I’m rather moody as of late. I fear that I’m slipping back into one of my major depressive episodes. The holiday season seems to only be making it worse. I think that I’m still harboring sadness and anxiety over how last Christmas turned out. It seems like I have a hard time letting emotional pain go. The more sadness that creeps it’s way in the more I find some painful memories stealing their way into my thoughts along with it. I wish that I could be numb to both the physical and emotional sometimes, that I could forget some things that have happened. Life would be so much easier that way.

Knowing that I might be falling back into a major depression but not being able to stop it is terrifying. And, I wish that it wasn’t happening around Christmas, I don’t want to ruin the joy of it for the people that I love. It’s times like these that I wish I could be medicated for the depression. Even with the awful side effects and conflict over putting toxins into my body, I just want to get better. But, thanks to the urinary retention side effect that’s not even an option anymore.

Painwise, I could be doing better. My hip subluxated about a week ago. It went back into place fairly quickly but it’s been really sore ever since. My tailbone is also dislocated again. I’ve been looking into the tailbone removal surgery, but it sounds like it’s one of those gambling decisions where you might just end up worse off than you already were. And, with my tissue disorder, I think it’s best not to mess around with surgery unless it’s straightforward and 100% necessary. Besides, I’ve been dealing with the tailbone dislocations for as long as I can remember. They’re getting more frequent and they’re painful but I can manage them. 

I found out today that I’ve been approved for an appointment with one of the best orthopedic specialists in our province. It’ll likely be in mid March at the Children’s Hospital. We’re going to line it up so that it coincides with my echo there for the Marfan/Loeys-Dietz clinical study my pediatric cardiologist is doing as well as my appointment with my new “adult” cardiologist. Two echos in a matter of days isn’t ideal, they’re very painful because of my rib problems, not to mention that doing two of the exact same tests seems a little pointless but we have to attend our appointment with my new cardiologist within a year of the referral or the process has to be redone. I’m nervous about meet two new doctors. I’m always afraid that they’re going to be jerks, but I’m hoping because one is a highly recommended specialist and the other works with children for a living that it’ll turn out okay.

Winter by Dieter Thau

I hope that all of you are doing well tonight and that you’re enjoying your holiday season!