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

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.

IMG_2579

IMG_2603

IMG_2647

IMG_2645

IMG_2649

IMG_2700

IMG_2702

IMG_2724

IMG_2766

IMG_2749

 

Truth

IMG_0903

IMG_08745

IMG_0827

IMG_0851


The truth is that I never shook my shadow
Every day it’s trying to trick me into doing battle

Calling out “faker”, only get me rattled
Want to pull me back behind the fence with the cattle.

– Truth by Alexander

Summer time and my last official day as a teenager!

IMG_2118

I love, love, love all of the flowers everywhere! I think the orange ones are my favorite but it’s hard to choose.

I’m spending my last ever day as a teenager taking it easy at home – not exciting, I know, but I’m enjoying it none the less. No partying for this girl lol! 

Meet baby O

The newest addition to our family; beautiful baby O, born in August. I got to meet her for the first time in October on Thanksgiving.

IMG_1243

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. 

IMG_1343

IMG_1371

IMG_1360

IMG_1388

Sleepy cat, helping me wrap presents of course.

Love, joy and peace to you all.

-Katie

One of my favorite places on Earth.

My grandparents built their house when my mom was just a baby on the most beautiful property. 40 years later and they’re still living there – though the upkeep may mean that they’ll have to sell in the near future. All of my best childhood memories were made here. It’s the definition of home for me.

IMG_0361
IMG_0341.1
IMG_0344
IMG_0355
I’m lucky to have had such a place in my life growing up. It really was magical.

Waiting for the will.

I’ve come to a bridge,
Now, it’s time to make a choice.
Not knowing whether it’s fear that stays me,
Or some inner voice.

Running out of excuses to turn back,
While waiting for the will to step forward.
I stand at this bridge,
And it’s time to make a choice.

©

A new step: Beta blockers.

As I’d mentioned a few posts ago, I had a doctor appointment last Friday. I told my gp about the change in my heart rate, and we made the decision that it was time for me to start beta blocker treatment. In many ways this was a bitter step for me. It was an affirmation that there is something wrong with my heart, it’s reality. It’s a scary thing to think about. When I write and talk about the aspects and dangers of my disorder in regards to my heart there’s a certain technical feel to it, I feel like I’m just talking facts and medical jargon. It’s important to me that I switch of any emotions that might personalize what I’m saying because I feel stronger and safer that way – it helps me cope. But, there are certain moments and milestones that hit home hard for me. Being reminded three times a day when I take this pill that I may very well need heart surgery someday or that I’m at 100 times greater the risk of aortic dissection makes it that much harder to keep those thoughts out.

The beta blocker my doctor decided on is Propranolol. It is also prescribed to treat many different types of headaches so she was hoping that it may help mine. To start with I had been taking 40mg three times a day, equaling out to 120 mg, but my heart rate started to climb again, so we upped the dose to 60mg three times a day. They definitely do make me more tired and weak, some days being worse than others. They’ve also made my circulation and Raynaud’s syndrome worse, where my thumb and sometimes other fingers and toes turn dark purple and become freezing cold. I’ve been experiencing the vivid dreams that can come with this particular beta blocker, but so far not the nightmares that they warn of. As for insomnia, I don’t know whether the pills are making it worse or if I’m just going through another bad spell. My headaches haven’t gotten any better, but I don’t know if I’m on a high enough dosage yet for that. My current dose is still not as high as I’m meant to get it up to, but they recommend a steady, slow increase so that you can safely monitor your blood pressure.

I feel very overwhelmed today. Family and social stresses in combination with the fact that my body is wreaking havoc is beginning to take it’s toll. I’m exhausted and in a lot of pain. I’ve been very lethargic while on the beta blockers and if it weren’t for the intolerable heat I’d be trying to nap right now. I truly, truly hope that those who are healthy do not take it for granted. I’d give anything in this world to have that one thing.


On an entirely different note, here’s a photo that I took at the height of flooding season. I loved the way that the reflection on the water looked with the beautiful sky.