Merry Christmas & Happy Holidays!

Ah, the holidays. I’d be lying if I said that I don’t absolutely adore this time of year. People are happier (kind of), nicer, and though probably a bit more stressed, seem lighter in a way. I’m not sure if that makes sense, but I hope it does.

Christmas today has been wonderful and a much needed day to relax at home and enjoy being around the fam. We all live under one roof (except for my brother who is away at college for the majority of the year) and we’re usually headed in different directions, so to be together is sadly, rare. Is what it is, just makes being together even more special!

Updates:

  • My normal PT has been away for the past few weeks so i’ve been working with another PT who I worked with for a year. Taking a different approach to things while we wait for him to get back… always good to get a second opinion!
  • Acupuncture was getting a bit complicated and confusing for a while there, in the sense that we had absolutely no idea whatsoever what was going on. BUT, that seems to have changed and now we may have found the source for some of my symptoms… whoopie!
  • Going to see some myofascial guy next weekend about my ankle to see if he can get my motor control moving in a better direction.
  • Riding is on the back burner right now. My old lease went home and we brought in a new horse for trial. She quickly re-aquainted me with the ground so it’s fair to say that it didn’t work out and we’re back to searching for a new horse. *Sigh*, wasn’t meant to be. Oh well.

Continue reading

I’m Still Me

Yeah, maybe things have changed a bit. Maybe i’m facing a chronic illness, maybe i’m facing one that is even threatening to take my life. Either way, please try to remember that i’m still me. I know things are different than they used to be and that my world, and maybe yours, has been turned upside down and spun 180 degrees. I might be too sick to get out of bed some days, or have to cancel plans last minute because I just don’t feel up to going out. Trust me, I don’t want it to be this way and though things may have changed, I don’t want you to treat me differently. I want to be that fun loving, excitable, and happy go lucky person that you used to know and somewhere beneath all of my symptoms, I still am that person.

I’m still that person that you shared many laughs with. I’m still that person that you hung out with and talked for hours on end about irrelevant drama with. I’m still that person that you ran around while we were screaming at the tops of our lungs, having not a care in the world. I’m still that person that you stayed up with until 3am binge movies and eating all the junk food we could get our hands on. I’m still that person that you came to when life just wasn’t going your way, and you needed someone who understood. I’m still that person you knew way before all of this happened. As much as things have changed, please help me keep some kind of normalcy in my life. I don’t want to forget the person that I used to be, and I don’t want you to forget it either. I don’t want our amazing memories to fade into the background of my new reality, wether this reality be just for now or for forever. I’m trying to keep those memories alive because right now i’m fighting to get that person back.

No matter what, don’t forget about that effervescent person that you used to know. It might be challenging for the eye to see, but please look just a little bit harder. Beneath the shell of my exhausted body and behind the tears that I occasionally shed, I am still in here. Please don’t forget about the real me.

Another day.

IMG_8281.JPG

Look at that, i’m back already! Today has been a bit of a rough day, so I thought i’d include a picture of Patrick Dempsey posing with a gorgeous horse to cheer myself up. Why not, right? I had PT today and kinda got slapped in the face with reality. Truth is, my ankle isn’t holding up well and isn’t happy with me. Despite my desperate pleas for it to settle down, it has taken on quite an attitude and has been throwing impressive tantrums. *Sigh* there are just some battles you just can’t win. I’ll be taking 1-2 weeks off of riding (mark my words, it will be no longer than that) to hopefully allow the pain to calm down so we can focus on improving my motor control, which will help me ride more comfortably and effectively than I can at the moment. While I admit that I almost broke down crying when I was told that I needed this tiny bit of time off, i’m okay now and am moving forward. I’ll be back soon, and better than ever.

9/8/16 Update

Whoops… I haven’t exactly been blogging. Not that people read this as it’s more of a way for myself to keep track of my progress, but still. Here’s a quick update of sorts…

  • Physical therapy: It’s going well and i’m trying to be patient as my motor control inches (centimeters would be better, but that’s not a real term) forward. I took a few steps back about 3 weeks ago and though we’re not sure why it happened, we’re trying to get me back to where I was. Slowly but surely i’ll get there, just have to be patient with myself.
  • Riding: WOOOO! Big one here. I’m allowed to jump again! I do have to tape my ankle and be sure not to overdo it, but i’m SO happy to be jumping again. I missed it oh so much and it feels good to be back in hunter land where I belong.
  • Health: Uhhh…. not really sure about this one as of right now. I’m in limbo I guess you could say. I had a setback a few weeks ago where I felt absolutely awful, but i’ve since recovered from that episode. I’m almost back to my baseline, just not quite there yet. I should have bloodwork results back pretty soon and i’ll see my doctor again at the end of this month so i’m hoping for some answers. We’ll see.
  • Random: I am still oh so obsessed with Hamilton… very, very, obsessed. Something about it just speaks to me and I can always find something in the music to help me through a rough patch. Love it.

That’s all for now, maybe i’ll be back soon, maybe I won’t. Who knows. Goodnight all!

Monday

Monday is a big (and scary) day. You see, i’ve had this little bugger sitting in the right side of my chest for nearly a year now, and it is time for us to part ways. For the past year, Mr. Portacath has been making his home in the right side of my chest and has greatly over stayed his not so welcoming, welcome. He (it) not so comfortably made his (its) home there and hasn’t budged since. Truthfully, i’ve liked it much more than the 2 PICC lines I had in the past except for one reason. You see, the first (and only… yeah) time I used my port I almost died, so that was a fun experience! *Please note the sarcasm!* While trying to start back on my IV meds, I had an anaphylactic reaction and if my mom hadn’t been right there, I would’ve been in big trouble. Alas, it is time for me to serve Mr.Portacath his eviction notice. He will be moving on out (FINALLY) early Monday afternoon. I’ll be out of commission for a few days and then it’s right back to working hard in PT – with a little more freedom in my chest! Lets hope no Port will ever be moving back in!

The Future

The other day I was asked a question that took me by surprise and felt as if it required some thought. I still haven’t really responded in the way I would like, so I guess this is one way of doing it. A new found friend of mine (knew him back in middle school but we were never close or really ever talked) asked me if I was afraid of the future. My first instinct was to say “Hell no” and that’s what it was left at. Living with a chronic illness is scary,that’s an understatement, it can be absolutely terrifying. Each day varies in symptoms so you go to bed one night not knowing what the next day will be like. The change in symptoms from sunset to sunrise is astounding and unbelievable at times. Would I ever willingly admit I am scared? Nope. Am I terrified? Nope. But, am I scared? A little, yes. I’m an 18 year old kid who at 15 got sick and entered the adult world of medical jumble. This new world was unwelcome as I had entered it much quicker than I had ever anticipated. I wasn’t prepared in the least and I still had a VERY strong phobia of needles. That was terrifying, but i’m not terrified now. I’ve learned a lot from this whole thing and one of the biggest lessons has been not to dwell. Don’t dwell on the not so great past, don’t dwell on symptoms, don’t dwell on things in life that are bringing you down. Dwelling on the negative will only bring misery, so why do it? Instead, look where you are now and find the little ray of sunshine in each situation. It’s tough and probably not always possible, but it does help when you can find a little positive in such a huge negative. So though in the past I was absolutely terrified and facing the prospect of living the rest of my life in pain, i’m now trying to continue moving forward. I’m not scared of the future because every single day is different. No two days are 100% the same. I can’t look into a future and be scared about it when I don’t know what it will hold. I know as of right now more negatives will come my way, but I also hope and know that more positives will accompany them. I’m standing strong and living in the moment, things can always change.

Hello Sunshine!

The sun is shining, the birds are chirping. Things are getting better, day by day.

Today was a big day. Anyone who knows me knows that I HATED my braces. Hate isn’t even a strong enough word, I despised those things and dreaded orthodontist appointments. Out of everything i’ve been through, all the shots and pain, the orthodontist was the thing that freaked me out the most. Kinda funny! I have been really wanting these things off for 4-5 months now and pretty much begging my mom to let me get them off. Thankfully she has been on board the entire time and left it up to me. 4-5 months ago though I still wasn’t happy with what my teeth looked like as they were not 100% straight and the gaps weren’t closed. Well thanks to some rubber bands those gaps closed. Long story short, I decided to go be a bitchy teenager in the orthodontist’s office today (with my mom’s approval) and demand they take them off. So that’s exactly what they did. I refused to let up and maybe even shed a tear or two. With everything going on the last thing I need right now is to stress over stupid braces! I turn 18 in less than a week (crazy, right?) so my mom has been giving me more freedom and independence and allowing me to make decisions for myself. It’s a great feeling. My braces are off now and it feels like a huge weight has been lifted off my shoulders + I love how my teeth look! Really straight and they look fantastic if I do say so myself. Though I hated those braces, i’m grateful that I was able to have them.

Also, on Saturday i’ll be picking up my new car! Here comes more independence! Can’t wait, this is a huge step for me and i’m very eager for it. Then next week I turn 18! So it’s safe to say that today i’m in a great mood and i’m going to enjoy every single minute of it!

AND the biggest thing of all, my mom’s friend GOT A MATCHING KIDNEY DONOR. She has been waiting such a long time and I am BEYOND thrilled for her.

Hope everyone is doing well and hanging in!