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!
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 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.
I am titanium. I am strong… at least i’m trying to be. I’m trying to pick myself up and dust myself off, despite the many things trying to pull me back down to a darker place. I’ve been there and I was stuck there for what seemed to be very long time. I had someone pushing me (not family) to do and say things I was not comfortable with and at the time I felt there was only one way out. He was a male figure who I had put complete trust into but he ended up driving me into a deep depression. It was scary, and I know I will never go back to that place, but whenever I start feeling a wave of sadness come back over me it makes me nervous. I’m keeping my head above water. Not only am I keeping it above water but i’m floating on my own and am keeping myself in a positive environment and surrounding myself with those who love me and care for me. I’m in a good state of mind which is something I haven’t been able to say for a while now.
On a happier note, it is my birthday in less than 48 hours. What is this craziness? I’ll be 18. I can vote and i’m legally an adult. This is huge and I intend to make this birthday the best I can and NOT spend it in another doctors office! I’ll be spending my birthday with friends and of course my favorite horse. You’ll be able to find me blasting music in my car headed to the barn to have a great, no doctor no medical nothing, day! WAHOOOOOO! Of course being a safe driver at the same time! I’m hoping in the next few weeks i’ll be able to see one of my best friends, Marybeth. She has been like a sister to me and a best friend. She gives me amazing guidance as she is older than I am and can always turn around my outlook when it’s negative! I can’t believe that i’m lucky enough to know such an incredible person. I know she’ll be able to guide me through the “big 18” and help me navigate this now seemingly larger world.
So June, give me all ya got, but i’m going to take it and run with it. I got this, and i’m fighting as hard as I can. I refuse to give up.
Great motivational song and the inspiration behind this blog post:
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 🙂
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.
6:00am i’m woken up by loud coughing, someone throwing up, and carrying on. It was my brother who apparently was sick and couldn’t use one of the bathrooms in my house that wasn’t close to my room. Sigh. Quickly curled up and headed back to bed.
8:20am. Now this one was interesting. My mom came barging into my room yelling at me telling me to get up because the Carbon Monoxide alarms were going off and she couldn’t get them to stop. Now anyone knows that when Carbon Monoxide alarms go off and you have checked them over for battery issues and stuff, YOU GET OUT OF THE HOUSE. So yeah, I got up, grabbed my dogs, and ran outside in my PJ’s to be greeted by the fire department. I could just feel the judgement as I was in short shorts and a t-shirt, but hey I just woke up and i’m sick! Thankfully we got the all clear and could go back inside.
That’s how my morning went. Afternoon was quieter which I spent resting and a couple of hours at the barn. I always say that I ride better when I feel like shit which I proved again today. That’s just how it goes.
Looks like we’ll be headed to a naturopath since i’m now allergic to medications that were supposed to solve all of this for me. Filled out some paper work tonight and realized that soon i’ll be signing for myself, which also made me think about how long i’ve been sick for. Though all of this has been Hell, i’ve matured a lot because of it and gained life experiences that many others won’t have. Trying to find a little positive in every negative 🙂
Have been super sensitive to light and sound today so really looking forward to crawling back in bed. So for today, that is all.
Write tomorrow. Stay strong, keep fighting, one step at a time.