Friday, February 24, 2017

In Dreams and Life

I've been busy with the usual every day life. Doctors. Trying to mentally process everything on my own. I really don't know when I'll be able to see my therapist again.

Lisa is moving. Less than two hours away, but I'll see her even less now. There's no exact date yet but it's coming soon. I knew they'd end up moving eventually so I'm prepared for this. It's still breaking my soul.

I hadn't dreamt of him in so long. In the last week or so, he's been the center focus of three. I will often have more than one dream per night, but it is affecting my sleep. I know something is wrong in the dream and it takes me so long to figure out what.

I guess I'm hoping that putting it to paper will make them go away.

Most days I don't even think about him anymore. When I do, I'm always angry. Maybe it turns to sadness for a little bit but always back to anger. Until I forget him again.

Time heals all wounds, they say. But mine have never healed. Maybe next lifetime will be enough. And if the gods are kind, I'll never meet him in another life ever again. I knew him when we met because we had met before, over and over. I'm tired of the routine. I'll never search again. I won't care at the loneliness nor the pull at my soul that there were people out there I knew but had yet to meet.

I'll keep running, next life. And however more to come, until the gods take the hint.

As I said to him, what feels like forever ago, no amount of good will ever take the pain away. No amount of happiness is worth it.

Tuesday, January 24, 2017


Where to even begin?

I'm relieved. I'm not crazy. I was right.

I was right to keep pushing. To see a bigger picture. To know that something more was wrong, even if none of my doctors could piece it together. Not even when I handed them excellent clues and points of direction to look into.

I'm not angry at my doctors. They're specialists looking at their own pieces to the puzzle that is me.

I am relieved because I had every right to be concerned, worried and scared.

Progressive. I knew whatever it was going on was progressing and getting worse. But to hear that? I don't if my tears were from being terrified, being right, and/or not being a wimp.

I saw a geneticist. I saw it on his face, the moment when everything I was saying pointed to a diagnosis. Probably an hour in. After all the family history and all of my history. The weird medical stuff that happened over the years.

No one has had an answer. He did.

A connective tissue disorder. I always figured I had a form of EDS. I was incredibly close. Joint hypermobility syndrome.

13 pages on JHS  it's by a doctor in DC. It's a long and short read. There's subtitles that give a good understanding of problems associated with JHS. The details are overwhelming. I've not experienced all of it, but very close.

I'll go in order. Chronic neck strain. Lower back pain. Sciatica. Disc problems (though I also have another genetic issue to blame for the disc issue, and by association, lower back pain). Neuropathic pain, which was the start of it all back in 5th grade. Unstable hips. Tendonitis. Chondromalacia. Costochondritis. TMJ. There's a mention of Fibromyalgia at least that one I've known about.

Issues with the entire Autonomic Nervous System. That's where it gets a little varied. Again only a few things are missing from the entirety. Problems with heart rate, blood flow, digestion, breathing, migraines, abdominal pain, adrenaline based anxiety, sleep issues, vaginal spasming (that one isn't a hard reach since everything else spasms whenever it pleases), and problems emptying my bladder fully-hence all the UTIs since I was a very little kid.

Everything physically going wrong with me is explained by this one disease. The simple points of symptoms sound god awful. They have been, are, and will continue to be. Progressive. It's not going to get better. I may slow the progression. I'm already on meds for some of this because my specialists were close. They were treating symptoms. That's all they can do for me, ever.

There's a whole list of things I should avoid. Things I should try to do. It's all there in that paper. I was also given a website for support and more information. There's more there. I wish I was kidding.

I've waited so long to write about this because there's so much to it. The sheer magnitude of symptoms and problems associated with this one syndrome is unreal. I have the benign version too. If I was diagnosed with Ehlers Danlos Syndrome, it would be the severe version. So I get off "easy." I really do, in all honesty. It could be so much worse. Think about that for a minute. All those issues listed? All that, more severe, more likely to develop major heart problems, more of everything. Just more.

So a breath of relief while also closing my eyes from the weight of it all. But I was right. So right. Validation. Over the next few months, I'll be informing all of my doctors about this diagnosis. Any time a new med gets mentioned, I'll have even more clearing to do with my doctors. Speaking of meds, apparently it's common for people with JHS to have more issues finding the right med or a med that doesn't cause further complications.

I'm not crazy. Okay, I am, but not about this. Even the geneticist made that joke because I had to mention the PTSD and depression. But this is real. It is a genetic problem. Even if no one sees it, I feel it every minute of every day. And now no doctor will ever have the right to dismiss anything as possibly psychiatric pain manifesting physically because they can't figure out what's wrong. I know what's wrong now and all the places it will manifest.

Absolute validation.

Sunday, January 22, 2017

A story from home

There's something important I need to talk about, but I'm having trouble finding any words at all.

Instead I'll talk about a creek I grew up with. I was always the adventurous sort. Finding small clearings in the little bit of solid woods my small, though highly populated, town had. Walking with a friend through some tall plants near the creek only to find out it was filled with poison ivy. I'm not affected by it, but my friend was. That was a one time adventure, heh

It was on that trip I saw something across the creek that would become my escape from the world for many years. On the other side, the earth ran high up to a side road. There were also small "sitting areas" just along the water.

Getting down there was always half the fun . It was steep from years of erosion and flooding. Every step had to be sure and well placed or risk sliding a good 15 feet into at times a very shallow bank. But at the bottom, there was more erosion so there was several places to sit. I lost countless hours to that creek. It was my place to think or not, depending on what I needed.

Very few of my friends ever knew about it. The ones who did enjoyed the solitude as much as I. The same friend who ventured out into the poison ivy was the one who sat with me at the creek the most.

One boyfriend saw it and my younger brother. That's always a fun story. We snuck out of the house in the middle of the night. I took him to my favorite spot. We didn't have flashlights, not that I would have needed one. But oh I wish I had one that night. I didn't know the creek had risen four feet.

There's this ledge as I'd climb down and once I got to it, everything wasn't as steep. It was essentially the alcove area to suit in with a small slanted path leading to it. However that night, right at the edge of the ledge, I went to slide off the ledge to the small path and found my whole leg covered in water.

I went out there in the middle of the night many times after that, but you can be sure I always checked that ledge for water from that point on.