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!

Hard 2 Weeks

Not sure what’s up. Don’t really know how to put into words what i’m feeling other than angry and exhausted. Couldn’t tell you why i’m angry or why i’ve been lashing out at everyone and everything for the past 2 weeks, I just kinda am. Not feeling well and not feeling like myself, that’s for sure.

I ordered a “Giving Key” today and it has a pretty cool concept behind it. They have a bunch of words you can choose from, or you can come up with a custom one (up to 9 letters) which is what I did. Once I fulfill and find solace in “Quiet” (the word I chose) i’ll pass the key onto someone who needs it more than I do. I’ll be holding onto it for a while, but once i’m ready, it’ll be sent to someone who is close to my heart and I think needs it just as much as I do. I can’t wait to get it and wear it as a reminder to find my quiet place in even the most stressful of times. If you want to check them out i’ll leave the link below. I hope everyone is doing okay and i’ll definitely be writing more, you guys will be sick of me! Goodnight everyone, stay strong.

https://www.thegivingkeys.com/

(They are also sold in other places/websites but that is the main website)

Walking on Eggshells

I am currently feeling sad, frustrated, and unmotivated. I got up this morning in a fairly fowl mood which wasn’t surprising considering that recently I haven’t been much of a morning person. No big deal and I went on with my morning to get ready for physical therapy, as I do twice a week. Normally PT will put me in a better mood, but even today it couldn’t kick the mood I was in. It was a good session considering I rolled my ankle again the other day and had a not so hot lesson yesterday, but I still left feeling agitated, which is far from how I typically feel afterwards. This mood has continued throughout today so it has been a bit of a rough one for me. It’s okay and I know tomorrow will be better, but damn, today was hard. I’ve lashed out at my mom a few times (sorry mom) as well as my dad which he frankly, deserved. Not even “Hamilton” is pulling me out of this rut tonight, AKA those of you around me better run and hide, like now.

I’ve been known to set a little “too high” standards for myself and the last few days i’ve been shoved back into reality so maybe that’s the source of this mood. Between riding and PT, I have high expectations for myself and when I don’t reach those it frustrates the hell out of me. Instead of admitting that something is hard for me, i’ll find any way to swerve around admitting it. Now this has been going on a while and my PT has said a few times “There is no denial in the Nile”. You have to admit defeat to move forward at times, and I guess that’s where I stand at the moment, and it frustrates and confuses me. Hopefully tomorrow will be better and if I find the motivation to get myself out to the barn, that i’ll have a good ride.

I Wish I Knew Where I Was Going

Don’t take the title literally, most of the time I know where i’m going when it comes to navigating streets or getting around town. I have some sense of direction in that sense and don’t physically get lost often. Emotionally, I can’t say the same. I’ve been slowly making progress in treatment, or at least I like to think so, though we’re still trying to put the pieces of the puzzle together to try and figure out how to make me feel better. I am confident in my doctors/rest of my team to get me there. Even if it takes time, i’m okay with it.

The past few months have been hard. I’ve been trying to cope with growing anxiety as well as physically not feeling well. My mind, quite honestly, never shuts the hell up. I wish it would. I wish I could stop thinking and stop worrying. I wish I could stop a compulsive habit that i’ve developed. I just want the world to stop moving for a bit so I can catch up and sort things out. Sadly, it obviously doesn’t work that way. I am trying to find my way while trying to keep myself surrounded by positive people, and people who are going to be there to support me. I need to keep my head above water, and I am, it just feels like sometimes everything is so heavy and is trying to drag me under. It’s scary and sometimes, even the toughest of the tough get scared. I’m a kid with a body that feels like it’s 80 and a mind way beyond the 18 years that i’ve lived. I’ve been through so much at this point and sometimes I stumble across photos from before I got sick, and for just a moment, close my eyes and try to remember the easier times. I hope and know that i’ll one day feel like the healthy 14 year old that I left behind 4, almost 5, years ago. I’ll keep fighting day and night just so I can take one baby step closer to life after Lyme.

With my birthday looming in less than two months, i’m hoping for a better 19 than the 18 that I was given. If it doesn’t happen, though i’ll be crushed, i’ll  move on and hope for a better 20.

Stay strong. One day at a time.

 

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!

Music Has Become My Rock

Recently i’ve been absolutely hooked on the cast album from “Hamilton”, if you aren’t familiar with it, it tells the story of Alexander Hamilton. Now I have never been one who is interested in history, but this has peaked my interest. At first I saw Lin-Manuel Miranda (he wrote the musical + plays Hamilton) on 60 minutes. Instantly I sat down and watched intently as he explained the concept behind this incredible musical. Hamilton is not the “traditional” musical that you would find on Broadway. You see, Hamilton is mainly rap. Again, rap is not something that I like in the least, but this is just… incredible. My mom was shocked when I expressed my interest as I quickly downloaded the album and became fascinated with this musical. Honestly at first I wasn’t sure why I was so interested in it as I was even more interested in this than any other cast album of Broadway shows that I have listened to. I think I have now pinpointed why and I have realized how much music has become a rock for me. Hamilton was such a strong and important figure in US history and he faced so much rejection and had the odds stacked against him at different points in his life. The music from Hamilton truly is inspiring and shows just how strong and determined Hamilton was to get his message across, and I guess that’s what I relate to. Some of my favorite music that I listen to is, of course, “Hamilton”, “The Lion King” original cast album, and various albums from Josh Groban. I turn to music when i’m happy, sad, mad, pretty much any emotion I feel, I turn to music to help myself cope/navigate it. My Lyme journey has been nothing easy, but I can truly say that over the past nearly 3 years now, I have consistently turned to music. It has been a very important anchor in my recovery, and as I continue to recover I find more and more music to keep me motivated and fighting!

I know this isn’t my “typical” post and that i’ve been pretty lazy on posting, i’ll be trying to post more soon!

Loss

I’ve lost a lot of things since I became sick. I’ve lost friends, i’ve lost my health, i’ve lost my ability to ride my horse. I’ve been surrounded by loss and i’ve dealt with it and taken it in stride. I’ve always been able to jump over those hurdles, or at least pull

myself over them. Yesterday I lost something, someone, that meant more to me than I can ever explain. She was my 15 year old dog. Her name was Belle (I called her Bella) which stands for “beautiful” in Italian. She was an absolutely gorgeous dog, both inside and out. We rescued her when she was about 1 (I was about 4) from a shelter not far from where I live. She had been in a bad situation where (we think) the man was abusive towards his wife or kids. We think that because from the minute she came home she protected both my mom and I, more so myself as I was little and she seemed to understand that. I pretty much grew up with her by my side. Whenever I was sick she wouldn’t leave my side and rightfully earned her nickname of “nurse dog.” A year or so ago someone tried to enter my house while I was home alone. Even in her old age, Belle growled the most viscous growl while showing her teeth and keeping an eye on me in the other room to make sure that I was safe. Thankfully whoever it was left before even taking more than a few steps into the house and Belle is to thank for that. Belle was my girl, she stayed by my side throughout my entire Lyme journey up to this point. She was there for me, always making me laugh and smile through the tears. Whenever I was upset she would be by my side or just tried to show me that she was there. My little sparkle of life isn’t here anymore and my heart couldn’t be anymore broken. Yesterday we did the last kind thing we could do for her, we released her from the pain that she had so bravely withstood. Yesterday my beautiful sparkle of light, my beautiful Bella girl, left this world. I miss her to a point that words cannot even describe, I will miss her to no end but now know that there is a sparkle of light up there somewhere keeping watch over me. Bella girl, mama loves you and is so thankful that you came into my life. Thank you for just being you, thank you for being my girl, thank you for being my best friend. I love you so so much. This isn’t a goodbye, it’s just a see you later my little angel 💕12063593_1015453251855227_5644274297517081134_n (1)