Category Archives: Pondering

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

Midnight thoughts

In contemplating the world, one always makes it around to things like deja vu and soulmates.

Why do we experience deja vu at the most random moments? Why when I was putting the bowl of raspberries down next to my computer and taking my shirt off did I go, wait, what, why did that feel so strange? Or walking down the driveway and thinking about a dream from many years ago that I haven’t thought about for a long time, did I have the feeling that  I’ve already done that?

If you look up the definition of the phrase, it means “the feeling of already lived through” something. But… Why do we have this feeling?! What purpose does it serve? These are the types of questions that are nearly impossible to answer. Yes, you can say it’s because you’ve already done it before, which does help- a little-, but why do we dream things that will happen? HOW do we do that?

Soulmates?! Why… why does this subject cause so many arguments? I’m a firm believer that there is one person somewhere that is undeniably perfect for you. Weather you find them or not… that’s a whole other topic. In Plato’s: The Symposium, there is a quote that I first read at a young age and have always thought about- “According the Greek mythology, humans were originally created with four arms, four legs, and a head with two faces. Fearing their power, Zeus split them into two separate parts, condemning them to spend their lives in search of their other halves”. This has always been in the forefront of my mind when in the dating scene as an adult. If you do have to search for the One person… How many people do you have to meet before you find them?

But, on the scientific side of things, maybe soulmates are just the atoms that were next to each other when the universe was created, trying to find their way back.

How are you suppose to know who that one person is though? Is it the person you had a crush on in first grade? The ex you have that you swore you’d never let back in after they broke you for the last time, but you still get a jolt of happiness when you pass them on the street? Or is it the person you’re talking to on the internet right now, that you’ve never even met in person? I think what scares me the most, is we never really know, we just have to close our eyes… and jump. There’s always going to be self doubt with every decision we make, hoping it’s right while the excitement of what you’re about to do is turning butterflies in your stomach.

What will you regret more in life? What you did… Or what you didn’t do? It’s a question everyone will ask themselves… and have an answer for someday. All you can do now is… Hope.

 

With love,

Sirius