Author Archives: Lifeanditsuniquebeauty

About Lifeanditsuniquebeauty

The ponderings of a 20 something year old, who can never get her thoughts in any kind of order.

Being broken on the inside

Apparently I’m feeling chatty today, so I think, I’ll chat about something I very rarely talk about even with people that I love and care about; how sick I am. Now unfortunately I’m not talking about a sick sense of humor, I quite honestly mean sick, the kind of sick with no treatment, no magic pill, just figuring out how to live on a day to day basis without it interfering.

So, here are a few of the things I’ll talk about today; HHT, EDS, Fibromyalgia and the whole subcategories that are the accompanying symptoms. Now as we go on here, please keep in mind that these are just My symptoms, there are others of course, as with anything in the world, but if I don’t know about something I’m not going to pretend that I do.

First let us start with HHT ( hereditary hemorrhagic telangiectasia) or Osler Weber Rendu syndrome, if that name is easier to say. The main thing about HHT is that it causes vascular dysplasia, meaning the blood vessels in my body have this fun tendency to break, usually causing me to have wonderful nose bleeds. Why you ask? Because the blood vessels sit very close to the surface in our noses and are very tender. Super gross, I know, but here is a few examples of how annoying it can be: Imagine happily eating and watching a movie, everything feels normal until you realize that your nose started bleeding into your noodles because you bent over the bowl. …. Yup, that’s a thing that happens. Or being asleep and having dreams that you’re drowning- and then waking up in a state with dried blood down your face (sometimes if you’re having a really good night it’s down your chest), on the pillow and blanks and… in your hair. Yup, that’s a thing also.

But sometimes, when the vessels break up higher in your nose, it doesn’t bleed out…. it bleeds down… Think about that for a minute… Figure it out? Well, when this situation happens, and believe me it happens a lot, that means you’re bleeding down the back of your throat and into your stomach. If you have ever opened a biology book and read a page or two, you’ll know that your body can’t process blood like food or water. When this happens, most often than not, you’ll puke black. With no oxygen in the blood, and having it be sitting for days at a time, it basically “dies” causing it to turn into the scene from Jennifer’s Body, and that is not a lot of fun. Having that fun image in your head now, let’s move on to something else.

 

The topic of EDS. Ehlers-Danlos syndrome is a connective tissue disorder, it effects skin, joints, collagen, and -oh hey look- blood vessels! Let’s start with some easy, not scary things; I’m double jointed in my knees, shoulders, right elbow and most of my phalanges. I’m ridiculously flexible which I do need to be careful about in all honesty. A lot of my skin is very tender and stretchy, very cool and slightly yucky. Now seeing as I have two different syndromes that effect the same thing, it gets interesting with the blood vessels here. I bruise very easily, and I do mean Very easily. We’re not talking little baby bruises, we’re talking bruises that are the size of softballs some days.

I’m going to dig into a few of what I consider “side effects” of EDS. Mostly things that are also very much go hand in hand with it.

~While I am very bendy, it also causes me a decent amount of pain because of the joint deterioration, sucks right?

~Skin that is so tender but extremely soft! Most people refer to it as ‘velvet skin’, and I don’t even have to try! So I guess that’s a happy thing.

~ The foggy brain, the fatigue, and don’t even get me started on the G.I. problems.

~Scratching and leaving huge welts where your nails were.

~Scoliosis! Talk about being bendy but having it hurt.

~Autonomic Dysfunction. That should be a topic all of its own.

Unless someone has a burning question about AD, I’m just gonna leave it at that for the EDS right now and move on to…

 

Fibromyalgia!

Unless you’ve been living under a rock, most people have a general idea of what that is. Wide spread pain, deep pain, shooting pain, stabbing pain, pain you didn’t even know you could feel. Restless legs, muscle spasms, back pain, balance problems. Good lord, the tinnitus- which is ringing in your ears, and the headaches. I’m sure there are other things that I’m forgetting- memory issues to!- but for now that’ll do.

The thing about having these problems, is that a ton of my symptoms over lap, in case you didn’t pick up on that. So trying to get an answer out of anyone about what was wrong with me was really difficult for many years.

 

There is no cure, for any of it. I know people who have died because of all of these things, my moms friend Jim being one of them. It’s not something to joke around with, even though I do a lot. Joking is my way of coping with this. These are real problems that no one can fix. If you’re wondering how a person can live with it, it’s simple; You get use to it.  But again I’ll say, please remember that these are My symptoms, the things I live with everyday and nothing more.

 

Having people stare and yell at me for being in public with my headphones and music, because it’s the only thing that can dull the ringing in my head and make me feel sane. Having friendships and a relationship or two be ruined because people don’t understand that no matter how hard I try, I can’t fake away the pain I feel everyday. Telling me to “Think positive, drink more water, get more vitamins, do yoga, carry around this rock” or whatever fad is suppose to make everything better, is Not going to make it go away. I wish it could though, I really do.  There’s another whole sub-thought category to go along here, but I think I’ve covered enough for now.

 

Having said my peace,

 

With love,

Sirius

 

 

 

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(Missing) Moon of my life

There’s a saying that I’ve had running in and out of my mind lately; Love someone who doesn’t love you back- you will die daily. I’m not sure where this came from, but I’ve found, so far in my life, that it’s true.

Why is it we are like this? The logical part of our brain says “No, don’t do this. This is not going to work. This person is not yours to love. This person is not yours to miss. Be reasonable, c’mon, Heart will love us better if you just listen to me. It’ll save so much agony.” But… I ignored Logic for Heart instead. Because life is short, I want to feel for this one specific person, of all the people on this world, I want This Person. I read something a while back that went along the lines of “Our ribs are cages because our hearts are wild animals, it must be contained.” I never fully and truly understood that until last year.

Anyone who knows me knows I’m a very closed off person, I never “dated” as a young person or teen. There were a handful- and by handful I mean 2- people I ever really liked. The first one… She broke my heart. But not like the way lovers do, the heart break you can feel coming, you see it from a mile away and yet still stand there and let it crush you. She broke my heart as a friend, which is- in my opinion worse. So, Lucky number 2, he was different, I knew going into it that nothing good would come of it. But, I listened to Heart, and Heart wanted it. I don’t regret either one, just to clarify if that’s how it sounds.

It wasn’t until I was almost 20 that I chose to start listening to Heart for once, which is what lead me to Lucky number 2. He’s different to Heart, Brain knows he’s not good for me, but that pesky Heart… I think Lucky is part of my problem lately, not directly of course… well maybe a little. That situation still has that unfinished, unsatisfied feeling all this time later. So much that was left unsaid, and I wish I could change it, but Lucky has a life, is engaged, and I will not go rock the boat with the petty little things I want to say to him.  I’m not sure why he started with me, maybe knowing how much I’d been crushing on him for so long. Maybe because it was “just for fun.” Maybe he thought I’d be a fun side toy, I honestly don’t know, I wish I did.

So, this is what Brain had warned me about in the beginning. This is what Heart overlooked because it wanted to let someone in… to not feel all alone for a while. So to try and ignore the hurt, I turn off inside, the numbness is peaceful but lonely. Sometimes though… I forgot to not feel, and the raw emotions of it is so overpowering, all of it from this time with him comes out- excitement, fear, joy, dread, the anticipation, the playfulness and daring of it. The hundred other things he made me feel for a while that I can’t even begin to name. One thing I never tell anyone… Is just how much I miss it-him. Like hell I’ll ever actually tell him that, even though that would probably solve a lot of the emotional turmoil I have. Because, the way I was raised, that would be considered weak, and I am not weak… usually.

 

In my head, everything I say makes sense and doesn’t sound this cheesy, but hey, whatever works right? So, just for fun, if you made it this far into my thoughts, what would you do in my situation?…

 

Moon.1 With love,

Sirius

(Something pretty to look at, because who knew it would be so hard to find the moon of my life?)

Penny for your thoughts

At some point in everyone’s life, there is a moment… or two or three, where your brain is so overcome that it just stops spinning. All gears, wheels and pulleys come to a screeching halt, the bells and whistles no longer making any noise.

There’s nothingness, it’s bleak, baron, and devoid of all life. Everything goes silent, but the kind of silent that feels wrong, like something is waiting for you, just out of sight in the dark. Waiting to pounce the second you turn your back on it. But ever so slowly, the light inside seems to flicker on, waiting, waiting for the electricity to come back to full power. I can almost see it, hanging in the middle of an empty room barley lit up, but trying desperately to work and do its job.

What thought is it that turns the power back on? There’s always that one, seemingly small thing you cling to to come back to reality. Why does it seem like that one tiny thing, while it has the strength to bring you to life, also kills you? It’s so good, but so heartbreaking at the same time. Never the less, you cling to that thought while everything else around you seems to spin so out of control trying to get back to the right place after the momentary shut down.

 

I honestly have no idea if this just happens to me or not, but wanting to get ones thoughts out of their own head is usually a good first step into figuring out what’s going on. Psychologically, that doesn’t sound like a real healthy thing in a persons life, considering I fibbed a smidgeon and it happens to me at least once a week. It’s only a few seconds in real people time, but feels like about an hour to me, struggling with the inner turmoil and trying to pull myself back together.

 

I realize it’s been a very long time since I last wrote anything, and I’m sure there’s a reason for that. I first started this blog-y thing because of all the conflicting thoughts that needed an escape route. I stopped because I was happy-for the most part-, but something has changed, whether inside my head or not, I haven’t figured out yet. If it’s just the holiday stress sneaking up on me, or something different.

 

But, until next time,

With love,

Sirius

Unexpected moments

Painting

Have you ever had a day where you said “Screw everything, I don’t want to adult today”, called in sick to work and just went on adventures?

Today was that day for me.

I’m a fairly hippy dippy person, I like finding pretty places to just sit and look at things. Flowers, trees, parks, gardens, rivers, lakes etc. So today, I went to the zoo and garden… mostly one of the garden areas. It’s a really pretty place that everyone is fairly quite in, not a lot of screaming children or young teens being obnoxious in, also is a great spot for wedding pictures- which is used frequently for that purpose.

So, as I’m happily sitting in the dirt among the flowers, watching the little hummingbird bees flying around, the dragon flies, ducks swimming and just messing with the little pebbles, I notice a man at the end of the walk way painting. Awesome! It’s a really beautiful place, lots of people go to paint, draw, or if you’re me- photograph it.

I was sitting there for a long, happy time. I’m a curious little thing though, I want to see what the man is painting. So, I happily get up walk over and start chatting with him… Only to notice he put me in the painting… Sitting in the flowers… I feel bad that I didn’t catch his name, he was a very nice man.

That one little thing… Made me so happy. It’s just a blob of blue, black, and tan, but for some reason it makes me happy.

 

Why is it the little, most unexpected things can make a person happy? Does something this small make other people just as happy? Or do they not care? I try to do little things for the people I care about, but most of the time it goes unnoticed. I will always still try though. Because… Happy… Happy is a wonderful thing.

 

With love,

Sirius

Mental, Physical and Life Tolls…. Of Emotions

Sweaty palms, racing heart, feeling like there’s a whole zoo of animals racing through your stomach, visibly shaking from head to toe, ice running in your veins… Why is this the effect of emotions on us?

We can go from being happy and laughing, to wanting nothing more than to curl up in a ball on the floor and cry until there’s nothing left to cry about.

But there are some people, like me for example, who are very bad at expressing any emotions that isn’t anger. Anger and I, we’ve had a long, stupid, complicated relationship. Most people I meet don’t know anything different from me, and as much as I try and try, I can’t help that.I vaguely remember a quote- “The first thing we think is taught, the second is who we want to be.” Something along those lines.

The way my brain is, the first thing I think when I want to cry or be sad, grateful or elated is “Bad”. Any emotion is bad. But, the second thing I think to myself is- “No, it’s okay, you can do that.”

Sometimes I forget that though. For a very long time; I forget that. I bottle everything up until it all just explodes out of me at the most unexpected moments. All the sorrow, grief, happiness, sentiment, fear, pity, envy, love… Shame. I scream, cry, break things. I put my fist through a window a few years ago… I tried boxing… That lasted a week until I busted all the seems on the bag. But mostly, I cry. Which as one can sort of expect, leaves a persons so drained, so exhausted, that you may as well be a zombie. After everything is done, I don’t want to talk to anyone, I ignore my friends, I turn into a horrible dog parent, and I want nothing more than to sleep.

This is a very destructive behavior. It’s ruined relationships for me- I’ve had break downs so bad that my doctor suggested I see a therapist and a behaviorist, basically everything sort of sending me to the nut house. As a result, that’s why I’m writing these blogs, to try and work through this. So, to the guy who put up with this for a very long time, and then gave up because I couldn’t explain what was happening- Thank you, I really do mean it. I just wish I could find the courage to tell you why I’m like this. Am I angry that it ended the way it did? You bet your god damned ass I am, I am so mad at you.. that you left me. I understand why you did though. I’m mad at myself also, so don’t worry about that.  Mind you, this was a lifetime ago, this wound still feels new to me.

When you are the way I am, people will think you’re an awful person, dark humor, sarcasm in almost every sentence you say, to the point where people can’t tell if I’m joking or not. Sometimes I can’t even tell. However…. Despite all this negativity, there is an upside, believe it or not. For as horribly strong as the negative is, the positive is just as strong. It’s definitely not as often as the anger, but it happens. I’m so happy, so bubbly, that my co-works freak out a little bit, asking what happened to me, are you okay? Why are you so happy? It make’s me feel bad, that this is what they say, “Why am I happy?” That they only know me as being the “angry smurf” nickname I live up to.

I try so hard to be happy. People don’t know how hard it is, to fake something like that all the time. To have all this built up inside, have it eating away at me, knowing I’m burning the candle at both ends- trying to contain it while trying to be positive for the benefit of others. The weight of it all mentally, knowing that I’m better then this. Remembering a time in my life where I wasn’t like this.

People will tell you to “just get over it”, “just don’t think like that”, my personal favorite “It’s all in your head, just stop”. Yes, it is in my head… That’s how mental illness works… I can’t just… “Stop”.

To everyone who knows me now and sticks by me.. Thank you so much. You have no idea what it’s like to have friends like that. To have lost so many of the friends I grew up with because they got sick of my crap, it’s disheartening. I try so hard to be a good person, and friend but I know I suck most of the time.

To everyone who has yet to met me- please… just be patient. I’m a tough nut to crack, but… I think I’m worth it…

 

So, if you’ve skimmed the story to this point, read this if nothing else. If you know a person who sounds like me, please don’t give up on them. Don’t. Even when things are really bad, even when they push you away. Even when the scream and yell at you. Even if they say they hate you and don’t need you… They do. More than they know, they need someone. But… Don’t be pushy about it. Tell them that you’ll always be there no matter what happens, or how long it’s been since you’ve talked or seen them. Tell them that, and give them space. Not an hour, not a day, maybe a week, maybe a month. When they feel that everything is under control again, they’ll reach out if they feel safe around you.

I promise.

 

With love,

Sirius

Social Dynamics of Validation

Have you ever thought about why we all subconsciously strive for validation, even from complete strangers?

Why is it when we do things like post a picture for example, we sit there waiting for someone to like it, or comment on it. Even a picture not of you, something simple, like a feather. Even though you took the picture, you know it’s good and beautiful in your eyes, you still wait for someone to agree with you.  Why do humans think like this?

Oh what, you think you’ve never done that? Well think about it for a minute. Have you asked someone if that outfit looks good on you, if your new hair cut is good, if someone likes your new tattoo? Yes? Well then, you’ve looked for validation. Do we not trust our own judgment? Is that why we do it?

It’s not a bad thing really, but if your life gets to the point where you can’t do anything without someone else’s say so… Well… That’s not a healthy way to live. I have found myself asking others’ opinions on things that they shouldn’t have an opinion on, like my one of my tattoos, one of the more visible that I have. I was asking my sister who went with me what she thought. I was sending pictures to my mom asking her opinion. She wasn’t answering me for about half an hour, and I was happy with the way it looked. You know what happened? She said she didn’t like this one big part of it, and after everything was all said and done? It has ended up being my favorite part.

The take away I learned from that experience? That while other people can give you their opinion, yours is the only one that matters at the end of the day. Your life, your choices. People can’t make choices for you. You can be influenced by them, absolutely, but at the end of the day, You made the choice.

I’m not sure what brought this train of thought on tonight, but it’s very interesting to think about. Have humans always been this way? Has it gotten worse the more social media grows? Having access to millions of people world wide without having to leave your house? I would think that, if nothing else, that has pushed us into looking for approval more. Being able to say or post a picture of something we have/done for basically the world to see, instantly?

 

While seeking approval and validation is good for somethings, don’t let it consume your life.

 

With love,

Sirius FeatherFeather2Orangeflower2

….Monster, the horrific story.

There is a story that has been haunting me almost every day for months. It’s the story of a cat named Monster, a very sweet boy who met a very tragic end way to early.  I think it’s time I shared it with you, mainly because… Well, I don’t know.
*If you are sensitive to fairly…. descriptive things, I’d recommend not reading, or skipping a few parts.*

So first things first in this story, the clinic I work at is very…. old school. We have been trying to bring it into the 21st century, but when old guys are stuck in their ways, its hard to voice any ideas, especially when one is a young female in this work place.

A few months ago Monster come in as an emergency, he had a huge inguinal hernia, abdominal muscles were absolutely shredded, and his pancreas had- for lack of better wording here- exploded. For the benefit of those people who aren’t well versed in medical terminology, it’s when tissues in the groin push through a weak area or areas in the abdominal muscles… That combined with the tissues already having sustained major trauma already, meant is was really ugly.  

Dr. E  did really good putting this poor guy back together. Monster stayed at the clinic with us being very closely monitored- because an injury like this could easily become infected- for about a week before he was sent home. He mad amazing progress in healing and was happily eating and drinking.  Discharge instructions were to keep him on antibiotics, twice a day for another two weeks.
Not 5 damn days later, he’s back. His mom “forgot” to give him the medication. So now he has a massive infection and does not look good at all. Keep in kind, this wound is about 7in X 5in spreading a crossed his entire abdomen because…. Infection spreads like wildfire . Old school vet clinic that it is, there no wound vac, his whole abdomen is…. bad. So he gets all medicated and we keep a close eye on him.
The Day our primary vet Dr. E is leaving for vacation, he takes a turn for the worst. Because isn’t that just how life works?

Apparently no one had bothered to check on him all morning, so when afternoon shift goes in we do our normal routine of checking- I do the dogs and Jess does the cats.

 Jess comes running into the lobby freaking out because what is left of his tissue has rotted away and we can now see his insides -the terminology for something like that happening to the tissues is called slough, for anyone who cares. Seeing as Dr. E is gone, the mostly retired Dr. G is “taking care of” all Dr. E’s clients. 
*Side note that’s good to know to understand this dynamic a little bit better
Dr. G is about 150 years old, and still thinks like an old school farm vet. No care to upgrade the clinic or practice, and doesn’t keep up with new studies, medication, ways of doing anything. I’m talking file x-rays… and *Gag* carpet in the lobby. Anyway, back to our story.
Dr. G proceeds to stick his fingers in Monsters open wound and twiddle around… with clients standing there horrified watching. The screams the cat made, it was like nothing I’ve ever heard. If there is a sound I never wish to heard in my life, it’s that.

I immediately call Dr. E to see where he is and if he can just come look at kitty, and call Monsters’ mom to come down.  Meanwhile, Dr. G goes in the back and starts poking around at kitty with no anesthetic- and I mean shoving guts back and forth, and making his insides squish around, I got a really good view of his liver for a minute, that’s who bad we’re talking.

After about 10 minutes of poking Dr. E shows up and pretty much goes “Oh ew, that’s bad” and then leaves. After me basically screaming that unless this cat goes to a state of the art clinic- like the one 10 minutes from us, there’s nothing we can do to fix it. Dr. G is honest to god standing there trying to sew this poor thing back together! Infected skin to infected skin, no gloves, and manages to wrap the sutures around the intestines before the skin gives way in a horrid ripping sound that there are no word’s to describe. The whole time this cat is crying in pain BECAUSE NO ANESTHETIC!

His mom arrives and said “no, he’s in too much pain, I don’t think its fair he should go through this.” Good choice lady. As is the logical thing to do, now we’re trying to get kitty to pass on and Dr. G just left in the middle of this. Myself and two others are the only ones there, and this cat won’t jut let go! His blood pressure was so low that the solution won’t travel to his heart. It took injecting it directly to get him to pass on. We just stand there in complete and utter shock looking at this mess for a good 2 minutes before we start slowly cleaning up everything. 

So, if you’ve made it this far in my story, I am sorry if it scars you a little, but you wen’t there. I have nightmares about this. 

I think the reason I have to share this is just that; I still have nightmares about this cat. I just need to get it our of my head and on paper, well not really paper.
This is the situation that made me start questioning my job at this clinic, and ever since  I’ve just seen things get progressively worse and worse.
With as much caring as I can manage,
Sirius