Thursday, December 1, 2016

Since I've Been Gone...

It's been a while since I last updated on here, and the reason for my absence isn't good news. That's exactly why I haven't updated in so long too, because things have been rough for months. I was really hoping good things would happen or I would start to pull out of being so sick, and then I would have something good to write about...Or at least I could have a positive spin at the end of my downer of an update.
Sadly, after waiting months for better things to start happening, nothing's really changed. So, I guess I just need to suck it up and write about the negativity that has been my life for the past few months. Why now, today, am I suddenly going to write about everything? Well, that has to do with how my day went today.



I had another allergic reaction tonight.

I've been off of all medications for the past 2 months or so, to cleanse my body from the last allergic reactions I had back in September. Being off of everything is saying a lot too because 3 months or so ago (pre-allergic-reaction), I was taking roughly 50 pills a day. Most were supplements to make up for my nutrient lacking diet, but nevertheless, that's a lot of pills.

I took half of a pill tonight, one I've been on many times before and never had problems with, and within 15 minutes of taking it I recognized symptoms that I'm becoming much too familiar with. My tongue got tingly, and then my lips, and then my throat, and then the roof of my mouth... I felt jittery, my stomach didn't feel good, my chest felt tight, and my heart felt like it was beating different. By the first symptom of my tongue getting slightly numb, I was already mentally cursing because I knew what was happening. I was having an allergic reaction to the medication.

Since I've had more experience with allergic reactions, I drank liquid Benadryl, also took a Benadryl tablet, drank a lot of water, made myself eat, and then I took a nap. When I woke up from that nap I felt so much worse. Every symptom was still present, but the nausea was worse. At that point, I wished I hadn't woken up. At least in my sleep I wasn't actively thinking about it. But, I was awake. So, I ate many more times, hydrated as best as I could, and I've been resting as much as possible while I wait for it to pass.

After finally stabilizing enough and mustering up enough energy, I took a shower. While washing my hair, more hair than usual fell out when I washed it, and it really saddened me to see the clump of my already very thinned out hair in the palm of my hand. Standing there with the water hitting my tired and sore back, with a palm full of my hair in my much to thin and boney hand, I felt like sinking to the ground and crying. My body is literally falling apart and no matter how hard I've been trying these last few months, I can't stop that. I'm powerless, I'm withering away, and I'm only 18.

For some reason, I didn't end up crying. I finished showering, finished my nightly routine, and then I got in bed, grabbed my laptop, and instead of clicking onto my normal late night tab (Netflix. I've been bingeing Gilmore Girls. I so recommend it), I found myself coming here. Without thinking about it or having a post planned out, I just found myself writing this.

So, here I am...

It's 4:33am, my thinned out and fragile hair is still wet and cold from the shower, my frail hands are cold from the chilly night air of this first night of December, and I'm laying here in bed writing about how my life is falling apart; because what else can I do? Underneath the drowsiness and sick feelings I have going on right now, I can't deny the odd sense of déja vu that I'm feeling. As I'm laying here writing, utterly powerless as my life and body are crumbling, I feel oddly calm. I feel like I should be more scared or concerned than I am. I always felt that way... In the 4 years that this has been my life, I always stay so calm when things take a sudden turn for the worst. I guess this is just how I cope. Plus, by now, I'm just used to things like this. "It's just my life.", like I always tell people, as if that helps.

It's sad to me how used to all of this I am though...

After 4 years, we're still confused about what's wrong with me and we still don't understand why my body does what it does. We know I have Lyme Disease and many other co-infections, but we learned this year that something else is wrong. We just can't solidly figure anything out. I keep developing more and more allergies and we don't know why. We keep trying to make things better, but it seems like everything we try to do to turn things around just makes me worse.

I don't know if guilt is the right word to use to describe how I feel, but I definitely feel some level of responsibility for the frustrating situation we're in. It's my body that no one can figure out, and I know that I can't help that, but still... It's my body. I know it's not my fault and I can't control my body and how it reacts, but I wish I could. I wish I could do more than just sit here.

It's an extremely frustrating, and isolating position to be in. My whole illness in general is very isolating. Yes, I have a great family and good friends and a boyfriend who's always there for me, but no one really knows how it feels to be me. It's far from easy to live the life I live. People can't imagine how heavy it is to have my life...

This all has taken such a toll on me, and a clump of my hair falling out tonight was the shitty ending to an already very shitty day.

I wish I could just be done with all of this...



To quickly recap what has been going on in my life since I last updated:

I had a bad allergic reaction to an antibiotic back in September. It made me so sick that I lost 5 pounds in a week, started losing a lot of hair, and I since then still haven't been able to gain much weight back on. Also, my hair just continues to thin out. Now it's to the point that I'm concerned I may start balding and thats a heartbreaking thing to have to deal with at 18.
I was in the E.R. 2 times in September. (Bringing the total tally of how many times I've been in the E.R. in 2016 up to 5.) Since I last updated, I've had 5-ish IVs, a chest x-ray, 2 EKGs, and I may be getting an ultrasound soon (to check my ovaries for cysts.)
I've been extremely sick, to say the least. So sick that I had to drop out of my college classes by about October. It was such a hard and heartbreaking decision to have to make, but I knew it needed to be done. My sleep quickly got worse and never got better, so I've been practically nocturnal for months. I fall asleep at 7am and wake up at 4 or 5pm. So, I'm not around people as much because of my flipped sleeping schedule.
I basically stopped writing by October because I was too depressed. In fact, I've been so depressed that I've barely been functioning. I stopped most of my hobbies because I had no energy. Pretty much besides sleeping all day and eating late into the night to try and keep my calorie intake up, I haven't done much of anything. It's been really really hard for a few months, and theres no sugar coating that. It's sucked and I haven't really enjoyed being alive. That's just the harsh truth. I'm back to where I was 4 years ago, every thing fell apart...again. I had to quit school, I had to let go of my dreams, I lost friends, I lost myself, and I was back to wishing I'd just go in my sleep so I don't have to deal with this anymore. The only real significant difference, is for all of September and most of October, I couldn't make it a week without crying really hard. Like, it wasn't just crying, it was painful, hard crying. Keep in mind that I'm not a cryer, at all. 4 years ago, I never cried. I went almost 2 years without crying, and in September I just lost it. I really fell apart. I was a mess.

I'm not saying I'm not a mess anymore, I just decided it was time for me to stop waiting. I waited long enough for things to turn around, and it's time for me to talk about the negatives and start moving past it. I had to let go of a lot of dreams (school being one of them) and I had to re-think my entire life...again. So, after a lot of thinking, I made a fashion blog. I love fashion and that's something that won't have to be vulnerable for me to write about (unlike this blog where it's all very personal.) I'm also going to start YouTubing more because I want happy things in my life. (Links to those pages will be in tabs.) On top of that, my family is going to be taking a puppy home soon. We picked him out 3 weeks ago and he'll be coming home a week before Christmas. I think he'll be really really good for me. I just need more light and positivity in my life, and what's more happy than a puppy?!

The best highlights of my last few months have been Halloween and Thanksgiving, which are in my top 3 favorite holidays. My family threw a party for Halloween and it was great. I had to sit on the couch the whole party, but it was great to have people around and to be laughing. For Thanksgiving, we had lots of family over and I had a great conversation with my uncle, and I actually really want to write about what he and I talked about. There were a lot of good themes in that conversation that I want to talk about. Hopefully I'll do a post for that soon.


Right now, I don't have a big inspirational twist to this. I'm not really to that point yet where I'm looking at this all in a positive way. But I moved up to at least being realistic and setting more realistic goals for my life. I want to get back to writing and I hope that soon I'll have something better to post on here. Hopefully something with a positive and inspirational twist to it.

But! Until then, I felt like it was time that I at least put an update out there. I can't move on to being positive again until I get the negatives out of the way. So, there you go. I got a lot out of the way. I don't know who will actually read all of this, but I needed to vent it out.

Thanks for reading if you did. I'll be back soon. In the meantime, go check out my new blog http://heyoitsmayo.blogspot.com💕