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.

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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.

Things are lookin’ up

5/26/15

I hadn’t written for a few days because frankly I was in a very bad mood. Things weren’t going my way and saying that I was extremely stressed about this whole new diet is an understatement. The idea of getting rid of pretty much every single thing i’m used to and replacing it with foods that i’m not used to was really getting on my nerves. Lets just say I wasn’t the most pleasant person to be around.

I also had a really bad lesson on Sunday. I was already in a bad mood and was upset and then my trainer went and yelled at me for a good 30 minutes. It was my fault because I wasn’t riding well, but still, it wasn’t what I needed. So yeah that ended in tears. Second time in two weeks… how embarrassing.

I had tutoring for school today as well. It went as well as it could considering i’m back to not sleeping at all, getting horrendous headaches, and feeling extremely crappy all around. Even though I wasn’t feeling well for whatever reason I decided that it would be a good idea to go bounce on the trampoline. Didn’t go on it once… or twice… but three times. And did a loooooot of jumping. It was so much fun but now i’m paying for it. Still haven’t learned my lesson, i’m sure i’ll be back on it in the next week or so!

So that is all. Hopefully will get back on track with writing. For now i’m going to go snuggle under some fuzzy blankets and watch Netflix! I’m sure the next few days will be better and more hopeful, but only time will tell. Oh! And I turn 18 a week from tomorrow. Really hoping that 18 will be a great year and i’ll be able to get back to being a kid. Hope everyone is hanging in and staying strong 🙂

Annoyed

5/23/15

I turn 18 in a week and all I want is freedom. Freedom to be a kid, freedom to make choices of my own. Freedom to decide what I want, not what someone else wants, for myself. I’m old enough and mature enough (I think) to know what would be the right path for me is or the right decisions.

My naturopath is demanding that I remove all computers and cell phones, and pretty much everything plugged in, from my room. This has me extremely annoyed. I am a typical 18 year old teenager who is attached to her cell phone and computer. I’m a social person even though i’m sick and am constantly texting friends until late at night or am on FB talking to people. Along with that I also have this blog which I am keen to keep using and writing on, and I do my best writing in my room at night. At least I think so. So this whole idea of “cut yourself off entirely and make it even more evident that you’re different” is not one I am fond of… at all.

This seems stupid, i’m sure, but this is one thing that I am NOT going to do. I am sleeping better since he adjusted my back and haven’t had nightmares so someone please tell me why the hell I have to remove them from my room. I DO NOT WANT TO. I have been sleeping with them for years and have never had any problems sleeping until I got sick, which is definitely from the Lyme. I do not believe that computers and my cell phone (all of which are turned off at bedtime) could be or would be disturbing my sleep. It’s stupid. Cut me off and isolate me a little more than ya already have, will ya? Jeeze! I swear sometimes doctors are aiming to cut me off from everyone and make my life just that much harder and more isolating. Even my mom is on his side. UGHHHH. It’s stupid and i’m not a happy camper tonight.

Naturopath Appointment

Appointment started at 9, didn’t walk out of the office until 11. Then I had school this afternoon. I’m exhausted.

The naturopath went well and he seems like he knows how to help me which is fantastic news. Only thing is that it’s going to involve a lot of herbs (mostly capsules) and then some liquids that I have to mix in with water. That and I have to drink 2 liters+ of water a day, and i’m someone who hates drinking water. It’s going to be hard but I hope i’ll get used to it, right now if I drink a glass of water in one sitting I feel like i’m going to throw up. Yuck. We’ll see…. my body is going to have to get used to it. I’m hypersensitive to taste,smell,sound, etc so this is going to be a real test for sure.

He also thinks that something is up with my liver (everything is clear on blood work in terms of my liver) but he said that and my brain seem to be really inflamed. Also that I have a build up of chemicals in my system which is also making me as sick as I am. He used “Autonomic Response Testing” to figure all of this out, though i’m not exactly sure how much of it I believe. Along with all of that I have a ton of sensitivities to different things like medications and foods. My diet will be changing A LOT which is going to be pretty hard, but again, I know i’ll get used to it. A lot of protein and pretty much cutting out everything else because my body seems to hate it. Sadly saying goodbye to gluten and dairy along with some other things *tear*.

Being an equestrian I have had several falls, one of which a many years ago got me kicked in the head. I was wearing a helmet but apparently that was a traumatic head injury and had thrown some things off in my body. He re-alligned my sacrum and some other wacky stuff and said I should be all set in that category and hopefully it’ll help some of the headaches and migranes i’ve been getting.

Besides ART, he used something called tapping. Now this drove me nuts to be completely honest. I’ve always been someone who doesn’t like being poked and prodded, now imagine a middle aged man constantly tapping your head and prodding different parts of you. He’s a very nice guy and very knowledgable, but by the end of the session I was ready to start tapping his head! GAH.

In a week i’ll be trying not to throw up while swallowing disgusting pills and drinking water with a bunch of minerals and stuff. Yay. Though it’s going to be hard I feel this is the right step in a positive direction….

I know i’ve left out a bunch of stuff so i’ll just end up incorporating that into some other posts in the next few days. Hope everyone is having a low pain day! I, for one, am off to go eat and crawl into bed early. Goodnight all 🙂

Jealousy

I’m jealous. Not something i’m proud of, and definitely not proud of the fact that the person i’m jealous of is my brother! It’s a valid reason(s) as to why I am but it’s just weird. I don’t know.

As i’ve said before we’re twins, so we’ve always been competing against one another weather it be in school or in sports. We were always kind of on the same “level” so there wasn’t very much for either of us to be jealous about when it came to one another. But now that we are on a different level school wise and friends wise, the jealousy on my end might just be beginning to show… though I would deny it anywhere but this blog. Oops.

We’re both 17 (turning 18 in less than a month) so this is the time in teens lives where they get to go out and have fun, meaning prom and hanging out with friends….. aaaaaand graduation. He’s graduating this year, i’m not. That’s the straightest way to put it. And i’m beyond jealous. I hide it as best as I can but ugh it’s so frustrating! I’m the better student between the two of us (or at least I was before I got sick) and I have always cared more about school and my grades than he has. Now take that, and imagine how it would feel to see your brother (who oh by the way doesn’t care about school) walk across the stage and graduate while you have been sick and all you can do is sit and watch. Yeah. Not fun. What has he done to deserve that? I’ve had a 24/7 job for over 2 years now and I don’t get a certificate for that, do I? I’m not complaining or anything (yes I am) but it’s so annoying. And that’s why I won’t be going to his graduation. Yada yada ya, once in a lifetime experience, blah blah blah, can’t ever go back and go, blah yada I DON’T CARE. Not going. That’s the end of that.

Besides school, he gets to spend time with friends and go to PROM. This isn’t as big of a deal to me as the school thing is as I do have a great support system and friends to stand behind me, but it’s just I was supposed to go this year. I was SUPPOSED to go. It was SUPPOSED to be my senior year and senior prom. But I CAN’T go. I’m way too light and sound sensitive for it to even be an option. You would probably find me in the corner in the fetal position with my makeup smeared which isn’t exactly picture perfect. He gets to go out and party while i’m home most nights lacking the motivation or desire to get off of the couch. Le sigh.

None of this is any fault of his own and maybe i’m asking too much, but I WISH he would appreciate how great he has it. He is living his life while mine is on hold and I wish he could see that he needs to be thankful for his health and everything he has.

Taking deep breaths and trying not to scream. It’s gonna be a looooong rest of the day.

Moving in a positive direction

Maybe things are going to start coming together? Maybe, just maybe, things are getting better. It’s hard to get your hopes up when much of your life seems to be pretty negative.

For one, I did it and posted on FB. That was a huge step for me as I hide everything from everyone that I possibly can. I felt like it took some weight off of my shoulders because now it’s “out there” and maybe people will be more understanding. People were so supportive and it was a huge relief. I also had an amazing ride today and the pony was fantastic, nothing like a great ride to lift your spirits! Today I managed to give one of my pups a bath (which she surprisingly seemed to love) and have a great ride. Great day but boy am I exhausted!

We have found a naturopath who will *hopefully* be able to help and is very well known in my area. It seems promising and like a logical next step since I am quickly developing allergies to medications. We won’t be taking me off of antibiotics completely and I will still be on a few and possibly an IV, but my body has made it clear that it’s done. We are also NOT leaving my current doctor as I still need her supervision and help. She is very knowledgable and will get me feeling better, it’s just going to take longer than we had hoped. That’s okay, i’m accepting it. As long as I can get out of my bed in the morning and get myself through the day we’re all good. We are looking for something to support my immune system as well as help my body to “chill out” as I like to say. Right now it seems as if it’s in a constant panic mode and everything new we try to introduce is just going to backfire and cause a lot of issues. I have had way too many hospital visits and I would like to not have to ever go again if at all possible!

ALSO. School is slowly coming together. Still have some stuff to figure out and I don’t want to jinx anything but we’ll see. I’m excited to get back to work.

I still have a few weeks off of pt which i’m so happy about. I really just needed a break from the environment. Don’t get me wrong, my pt is fantastic and she’s very nice, but when you’ve been in PT for over 2 years sometimes you just need to step back and give yourself a bit of a break if you can. I’m making sure I don’t slide down hill in that aspect (though my ankle is starting to get mad at me… grrr) but i’m hanging in and am thankful for the time off.

So today has been a good day. Physically I feel like i’ve been beat up by a big bully, but emotionally i’m in a good mind set. And personally I can handle the physical issues (most of the time) but the emotional ones are the ones that tend to tear me down.

That is all for today. Stay strong, keep fighting, one step at a time.