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.

Sunday, January 8, 2017

Submission Disconnected

I feel...disconnected from my submissive self. The part that crawled out into day dreams at an early age. The part that swept into my spirit, encompassing my mind and heart. I always knew it was integral to my core.

Lost isn't the right word for this. It's not gone, for it is me. At least, it's one of my three main inner monologues; and two of them are constantly disagreeing, heh

I think I've been moving toward a survival mindset longer than I realized. I simply sank into and embraced it more recently.

And survival leaves no room for weaknesses, perceived or real. I am oh so vulnerable as a submissive. I'm not in a place where I can allow vulnerability.

Being submissive has blinded me from truths I should have seen, left me burned in ways no heart ache ever could. It is an intoxication.

Somewhere deep inside I know the longing, the craving, the need continues to exist. Just as it always has and always will.

But I can't be that. Not now anyway.

This tough exterior, the survival instincts, and the many walls that have been reconstructed protect a very fragile core.

I can't take any more of my heart breaking and my mind shattering.

So I've fallen back on old habits and tricks that allowed me to survive, during the darkest moments and years. And no, not the Ex. Long before he came into the picture. He stumbled upon already laid ground work, but he was not the worst.

That always surprises people. But I learned from an extremely early age how to survive when everything is falling apart within and without.

Submissive was a dream. An idea that I knew was right, from about age 11 or 12, without the full understanding of why it was so right.

I'll hold onto that dream again, knowing it will get me through this current storm. With the sheer amount of everything catching up to me, I can't...be who I am.

But nothing has held me down forever. I know things will settle into place and I'll find my own weird sense of closure. Until then, I'll dream.

Tuesday, January 3, 2017

Winding turns

2016 left its last few days making me grateful to leave it behind.

I have a million thoughts running through my mind, which is so very pleasant, but it leaves me not knowing where to begin.

I'm on my final week of topamax and I can taste nearly everything properly again. A huge relief. The constant headaches I could do without but I'm hoping those will ease up. If not, I see my neurologist next week.

This marks the start of not seeing my therapist for at least two months. With him no longer taking insurance, it won't be in the budget for a while. I'm wondering if I'll go stir crazy with all the thoughts or if it'll give me some time to relax and take a break. Most likely both, knowing how my mind functions.

I decided this was the year of taking no shit. People better step up or fuck off. I've already begun. People have to be better this year than we've needed to be. I think many people, myself included, have grown complacent. This is not a time in history where we can avoid to be on the sidelines. I don't know how much of an impact I can make, but I'm going to do my damnedest.

I have only one resolution for the new year but for now I'm keeping that a secret, all to myself. No one knows about this, except in some passing conversation from some time ago. Not what it has become nor the evolution to get there.

As for everything else, I'm floating in and out of a state of being passive, emotionally speaking. Not having to feel has been incredibly helpful for perspective and the occasional peace of mind. It's just a mind trick and coping mechanism, but not all are unhealthy. Being able to step back, shut down, be yet not be has allowed me to get through many days, many awful times in the past. When there are times where my emotions and thoughts are so overwhelming and damaging, I need a safe haven.

My thoughts and emotions have been taking turns into places of my mind I thought long gone. My last session with my therapist had him concerned. I didn't like where I was heading emotionally, so I stopped it in its tracks. I've been slowly world my way out of that direction. No, not depression. Something far worse. Feeding the anger and embracing it.

I will never be that person, even if I'm capable of it.

Like I said, lots of thoughts on all different directions. The freedom to think clearly and to bounce all around is something I've missed. Something I lost long before I began writing here. So this should be interesting if nothing else.