2/14/17

So it’s the new year… and i’ve been no where to be found… oops. Thanks to my friend for pointing out my absence or else I may have never made my way back. Gotta keep you on your toes, no? Posting schedules are overrated (this is heavy sarcasm, please no one attack me).

Quick updates:

  • NEW PONY! YAY! He’s a 19 year old Westphalian. Until he leaves in June, i’ll refer to him as “Pig”. I still miss the Dutch Warmblood I had more than anything and he’ll always be my heart horse. I’d be lying if I said I didn’t regret letting him go.
  • Physical therapy- It has been up and down. My motor control hasn’t gotten any better so we’ve now added myofascial release to the never ending list of treatments. It isn’t helping so far if i’m being honest, and i’m not the biggest fan of it, but i’ll give it a chance.
  • School- I don’t know if i’ve touched on this recently or at all. I’m a senior but won’t be graduating until late this summer/sometime in the fall. Basically i’m just catching up on classes and making up for time that Lyme stole from me.
  • Health wise- Seems like the lyme + co-infections are out of my system and now we’re just looking at dealing with the “consequences” of Lyme. I’m still working with my acupuncturist, physical therapist (obviously) and now the myfascial ¬†release guy.

 

That’s all for now. I know I don’t have many readers at all, BUT if anyone has suggestions as to what you’d like to hear from me that would be very helpful ūüôā

Absent

I’ve been gone for a while… again. Not sure why I can’t get onto the bandwagon when it comes to WordPress. I feel like i’ll never gain a following on here, and while I know that that shouldn’t be my motivation to write it, shamefully, is. I do love writing, but I also love having an audience and getting feedback from said audience. It’s funny, i’m not an overly social person “in real life” but I love communicating through the internet and through social media. With that being said, what 19 year old doesn’t? I’m considering posting the link to my Tumblr if I haven’t already, I have a more consistent presence on there and sometimes (rarely) write about my life.

Change of topic, woohoo! Today was the election and my first time voting, i’m officially an adult in the eyes of the law (sort of, I still can’t drink) so this was a pretty exciting milestone. Tonight will be spent biting my nails and searching for a hard wall in my house to bang my head against if the election doesn’t go the way I would like. I’m hoping by the end of the night i’ll be singing “Never gonna be president now!” (Hamilton reference, if you get that we should be friends) about the candidate that I strongly dislike. Oh boy, we’re in for a long night!

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)

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!

Dear 15 Year Old Me,

Dear 15 Year Old Me,

Hate to break it to ya,¬†but your life is going to be turned upside down soon. I know¬†you’re probably pretty confused but i’ll lay it all out for you. Listen, before I get into the nitty gritty of it all, know that you’re going to be okay. Despite everything that you are going to face in the coming years, you’re going to make it through each day alive. As long as you’re alive and breathing, things could always be worse. You’ll make it through, that I can promise you. As i’m writing this at the ripe old age of 18 having more experience than I did 3 years ago at¬†15, I know a lot more now than I did then. Kiddo, you’ll be alright. It’s going to be a long journey with a fair share of its ups and downs, you’ll struggle but you’ll also realize how strong you are.

14 will have been your last full year of health for quite a while. I know, I know, I didn’t write this warning to you when you were 14, but I guess I just wasn’t ready to face this… my bad. As school gets more and more stressful you’re going to start getting sick. You won’t know it for a while, but that hand that is slowing down? Yeah, you’ll lose the ability to use that for a few days. And that nagging oh so annoying back pain that just won’t leave you alone? Get ready because it is going to take things up a notch soon. March will roll around before you know it, brace yourself for what is to come because honestly, it’s going to move pretty quickly from here. You’ll see an orthopedist at first who will shrug the pain off and send you to physical therapy for what was supposed to last for 6-8 weeks; you’re still in it when you’re 18 and will be for the foreseeable future. That hand will lock soon and you’ll be misdiagnosed with something called Chronic Regional Pain Syndrome. I know you’ve always been told that doctors know everything, but explore other options. Ultimately, CRPS won’t be your biggest problem or even your diagnosis. You’ll be in and out of the hospital many times, you’ll have to put up with¬†the torturous PT/OT sessions. I know they hurt but do everything you can to tolerate it, those people have your best intentions in mind.

Unfortunately, your¬†pain will get worse and neuro symptoms will start flaring. You’ll be rushed around from doctor to doctor. Trust me on this one, start getting over your fear of needles and doctors now, it’ll help you in the long run. You’re going to have to deal with nerve blocks, mri’s, blood draws, PICC lines placed, a port a cath placed, etc. Like I had explained about your¬†hand before, your foot will be paralyzed for 8 months. This won’t last for forever, with hard work and an incredible physical therapist¬†you’ll get use of it back. With that and other things, you will be out of riding for quite some time, don’t you even dare think about walking away. There is a horse out there who is waiting for you, i’ll explain that later. You’ll also be out of school completely for over a year, don’t let that put you off. You’ll be back in school, even if just homebound, and you’ll excel as much as you can. None of those are fun and some are scarier than others, but again you’ll get through them. You’re stronger than you know, please don’t let anyone¬†tell you different.

Over the course of the next few years you are going to learn a lot about people. Not everyone is going to make an effort to keep in touch with you, accept it and move on. Those people aren’t worth your time anyways. Doctors, yeah, they don’t know everything and some of them are real jerks. With that being said, they are only human as well. Sadly, not every doctor will be able to help you.¬†Don’t let it get you down, when you’re 16 you’ll find a great doctor who will really help get you on the path to healing. Hang in there. When you’re 17 you’ll find another great doctor who will join the team to help you heal.

15,16,17, year old me… know that it’s okay to cry. It’s okay to have a total meltdown. You won’t start accepting this until you’re 18 but I so wish I could change that. It’s a lot to take on for anyone, let alone a kid. You don’t have to hold it together for everyone else. Crying doesn’t show weakness, it doesn’t say that you aren’t strong, it simply just shows that you’ve had all you can take and need to get it out of your system. Let it out, there is no shame in it. Be strong, but don’t be so strong that you don’t allow yourself to feel.

Along the way a little miracle will come along. That not so little miracle will be a Dutch Warmblood standing at 16hh. January 2nd 2015 you will meet your best friend, your partner in crime, the one who will make you smile even when the tears just can’t seem to stop. The soft nicker he lets out when he sees you, the quiet cuddles when no one is around, the quiet hacks, all those little moments will remind you of the beautiful moments that life holds. Embrace those moments, they will help you get through the tougher times. Despite things that will come up, don’t give up. He’ll take care of you, he knows his job. Trust him, he will be there for you through everything. That Dutch Warmblood will make everything worth the suffering. He is worth it all, I promise you. Stay strong for him if for no one else, he will be your rock.

A few months after you turn 18 things¬†will change and pain will intensify. This is the point that¬†i’m writing from now. I’m not giving up now and 15 year old me, if you could have seen this then, I wish you saw¬†the beauty that life does hold. Things will be very dark for a while but they won’t stay that way, okay? You’ll be alright, you’ll get back on your feet, give it time. Deep breaths, take any pony cuddles, and find joy in the little things that life has to offer.¬†Keep kickin’ kiddo, one day at a time.

Sincerely,

I wish I had known the things I know now

-18 year old me

A little blogging hiatus

Well I haven’t written in a while. I’m not exactly sure why i’m surprised as *sadly* I have never really been able to follow through on this kind of thing since i’ve been sick. Oh well, i’m back now and that’s what matters.

So since the last time I wrote things haven’t exactly been going very well. To sum it up, i’m getting sicker… or am stuck¬†at a “sicker” level if that makes sense. I was in the hospital for a few days recently because my pain skyrocketed to an unimaginable level that I just couldn’t handle. I have an extremely high pain tolerance (even my pt has remarked at how high it is) yet this was just not something I could tolerate. Thankfully instead of now being a 10+ it is hovering around a 6-7, which for me personally is manageable and tolerable. I saw one pain management specialist last week and am seeing another tomorrow for a second opinion as this new flare of pain is showing no signs of relenting. Queue the sigh. I also have to go get an echocardiogram of my heart since they thought they saw something going on with my heart while I was in the hospital. Because of that and the residents there being extra-cautious, I spent some quality time with a lovely heart monitor. It was a fun time (total sarcasm, fyi)¬†but boy am I glad to be rid of that thing. So back to the echocardiogram. That really isn’t a big deal at all and i’ve had one before, just another appointment. That’s at the end of this week. Then next week I meet with the cardiologist to go over results and all that fun stuff. Yay.

But alas, the fun doesn’t stop there! I think in the first week of September I get to go see a lovely hematologist to try and figure something out as well as schedule iron infusions. I’m sure she is very nice, but again, it’s another doctor and another appointment. This 18 year old is tuckered out and just can’t seem to find a break right now. Taking things one day at a time and trying to find¬†joy in the little things that life has to offer. Would love to hear how everyone else is doing! Stay strong and take things one day at a time!

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.