What’s New

Leila Raven Posted in General

I can’t decide if it’s a little or a lot, new that is. It’s a lot but it seems like it’s a little.. or maybe it’s just a little and it seems like it’s a lot?… Actually, it feels like both, or maybe neither.

Confused? Yes. My head spins with it, chronic pain seriously fucks with your head. I stutter, I can’t remember words, I can’t remember what I was talking about, I can’t think straight, they call it ‘fog’, ‘fibro fog’. They should call it ‘feeling like you’ve had half your brain smashed in by a brick’… that’s too long, maybe ‘fibro-lobotomized’ that still sounds too friendly… It all sounds too friendly.

You always think when you’re sitting in a first world country, watching what is happening to other people in a third world country, perhaps on an interesting documentary from your cozy living room, that you have a pretty good grasp of the situation. You know you can’t relate, what it’s like for them, but you can learn from the nice documentaries and have some empathy, and feel like you know theoretically what is going on.  Chronic pain used to be something I thought I had a relative grasp on theoretically.  When you’re not sitting comfortable on the outside, looking in, but sitting on the inside, looking out, it looks completely and entirely different.

You know, I used to just write, not edit, not check for cohesion, etc, and just write one long stream of consciousness post and hit ‘publish’. Now I have to go back, read, and re-write, re-write sentences that somehow lost words I thought I typed.

I have holes in my head. Pain is a gun that has shot holes in my head… fibro-lobotomized, shot gun style, lots of little pellets, where memories, mostly short term, ideas, hours of days, words, thoughts, functioning, just slide on out. Lost.  When my parents were here I think they thought I was ‘confused’ because of medication I was on. I had to explain that the medication I am on doesn’t have those kinds of side effects.  I’m not on anything remotely narcotic or mind altering.  I used to think pain killers, killed pain, and if you were a person with chronic pain, you just had to cope by dealing with the fact you might have to be a pill junkie for the rest of your life.

I fucking wish. I had no idea that for lots of chronic pain conditions, there isn’t medication that works.  It doesn’t work.

I explained to my parents, that this was part of the package deal I got with my fibro, the holes in my head, inability to think, losing chunks of things I would like to keep in there, don’t know which is more frustrating the actual physical pain part of the pain, or all the other stuff, the emotional pain part of losing control over not just your body, but your mind too.

So, enough of the emotional venting, need to vent, that’s one of the biggest reasons I blog. The other is it’s a place to record things. Which I may have to actually start reading myself in order to know what’s happened.

We’re not moving to the Island. Wolfe loves his job here. I love Wolfe, and the financial stability of his work situation combined with the lure of future excellent medical benefits… too tempting. I’m a little dissapointed, but not much, and also largely relieved too, because moving is a huge ordeal/stress.

I think part of my wanting to move so badly was a metaphor for trying to run away from my pain. Honestly Leila… no matter where you go, it’s going to come with you.

When I was very depressed years ago, and suicidal, I was always trying to ‘run’ away from the pain. Physically get up and go somewhere, anywhere, and maybe ‘there’ it would be better.

I’m out of metaphors… which I think is a metaphor for something, we’re back to the beginning, with truths in contradicting negatives.

It’s comforting, that the parts of my brain that are still there, seem to have some higher functioning.

Laundry list of what else is new…

Two puppies have gone to their forever homes, four puppies remain, two of which we’re keeping, simple math, I miss the puppies we have here more than the ones we don’t.  That’s another metaphor, but it’s too big for my brain.

There’s other new things, but I’ve forgotten them for now. It’s late, and it’s time I martyred myself and laid my ‘holy’ head down on a pillow.

Just to remind myself… “I cried because I had no shoes, ’till I met a man who had no feet.”

People have had it much worse than I, and they still get by. They survive, I guess the question is, can I.

How long does a virus survive outside the body…

Leila Raven Posted in General

You know how when you get statistics from STI resources that give a time frame a virus can live outside the body, how do they determine the upper end? The maximum amount of time? How does the laboratory study compare to real life?

First off, the laboratory determined lifespan is going to be the real and genuine ultimate maximum. Why? because in these studies they are trying to find the ultimate maximum survival. They are doing their damnedest to keep the virus alive, and they are specialists in these viruses. They use super concentrated virus, much higher than found in ‘natural’ conditions and they use methods to provide the virus with the ultimate beneficial environment to keep it alive for as long as they possibly can. That is how they achieve that maximum environmental life span. Scientists specializing in the virus, using a super version of the virus, and using all their knowledge and equipment to try to keep the virus alive as long as they possibly can outside the body. They want to provide us with the best and most accurate data possible. There is no way, doing the best you can outside the laboratory to come anywhere close to creating an ideal environment to support that virus, and you’re not dealing with a specialized concentrated viral sample.

Here’s one quote from a study on HIV “In order to obtain data on the survival of HIV, laboratory studies have required the use of artificially high concentrations of laboratory-grown virus. Although these unnatural concentrations of HIV can be kept alive under precisely controlled and limited laboratory conditions”.

This quote is typical of these studies to achieve the data to give us statistics on STI’s.

I’ve written an article before that gives the maximum lifespans of various viruses outside the human body. When the studies say that’s the upper limit, then that’s the upper limit. They’ve gone through rigorous varied testing to create super strains of the virus and then do everything in their power to keep it alive outside the body. No environment you create is going to be better able to support the life of that virus outside the body. The data is there, and it’s accurate.

My bafflement is why people who engage in behaviors that serve a potential risk to come in contact with blood and body fluid STI’s don’t know this information?! It’s readily available. It’s available online, it’s available through medical practitioners. Or they are aware of the information but somehow have decided they know better than the scientists and health practitioners that specialize in the subject area.

I mean, it’s not just about STI’s either, cold viruses, flu viruses… if you want to know how to protect yourself from getting a bug, Millions of dollars have gone into researching just that, the health information is there for the taking. Empower yourself.

Health care…

Leila Raven Posted in General

I see a lot of Dr.’s these days, outside of my family doctor I have my psychiatrist who I see for medication prescription changes for my major depression, I don’t see him often because I’m not doing therapy with him, he just manages my meds.  I have the rheumatologist who diagnosed me with Fibro +, the plus part is on top of having symptoms that would diagnose me with Fibro which he thought I had, he also said I had additional symptoms not typically seen in Fibro that may indicate additional illness.  Specifically I had joint pain and inflammation not usually associated with Fibro.  I’ve been through a few other specialists as well. I also have my gastrointerologist who I’ve seen a few times now, and who will be doing a colonoscopy on me in June. I see a dentist once a year. I see a sexual health worker on average once a year, sometimes more, sometimes less, depending what’s happening in my relationships sex and kink wise.  Basically before I engage in any intimate relationship I do the ‘exchange STI paperwork thing’, this is well after the STI talk. I don’t do fluid bonding till after 6 months into a relationship where there’s an agreement of ‘exclusivity/monogomy’ and another round of testing and paperwork sharing. In general, on the scope of what most adults do in regards to safer sex, most people put me in the ‘over-cautious’ category. Sometimes they think I’m paranoidly anal about my safer sex practices.  For instance, I don’t casually kiss people, I used to make out and swap spit with less discretion in my teens and into my twenties, but I’ve become more and more cautious over the years. Other people consider the risks of ‘french’ kissing, and various forms of ‘oral sex’ to be within their personal safer sex guidelines even without barriers. I think everyone is entitled to make the decisions that work for them.

At any rate, I take my health seriously, sexual health and otherwise. If I ever have any health concerns, I usually a) google and research on the internet like mad, and b) make an appointment with my doctor or specialist depending on the issue, so that I can discuss my concern with them, and compare what I’ve found out online to what it is they suggest/say.

Perhaps you do this too. Oddly enough, or maybe it isn’t odd, and I’m the odd one. I have been encountering so many people with sexual health questions lately, who don’t get answers to their questions by seeing sexual health specialists.  I can see how for some people, this would be a more ‘sensitive’ area that they would be less comfortable discussing with a Doctor or nurse than a non-sexual health issue. However many of the people I see not doing this, are generally people I would think would be comfortable talking with a health care worker about sexual health issues.  I’ve been witnessing people make all kinds of assumptions and guesses about things, and blatantly wrong ones at that, when there actually is real answers to their questions providable by real experts in that health field.

Sexual health workers, they’re your friends, they have great information, and if you make an appt. and go in to talk to them, they’ll usually happily not only answer a gazillion questions, but gift you with some free condoms and lube too.  My local clinic was thrilled to see me when I came to talk to them about some concerns I had around my adult dungeon parties, they gave me a big bag of flavored condoms and lube, and some pamphlets and posters for the dungeon to boot.

Health care, it’s a good thing.

walking a dark path

Leila Raven Posted in General

You know, life has been throwing me some serious curve balls over the last few years. I just get over the hysterectomy due to 16 rapid growing fibroid tumors in my uterus. To having wide spread pain, and a whole evil check list of symptoms and getting a diagnosis of fibromyalgia. Fibromyalgia that seems to continually get worse, and more challenging to deal with. Health wise, I’ve been down this twisty turny dark scary path. Not knowing where I am, what’s going on, and where it’s going.

Just when I thought things couldn’t get any spookier than they are, last night I discovered my tail bone wasn’t where it was supposed to be.

This is my coccyx we’re talking about, not some soft tissue item that may shift a little, shouldn’t my spine pretty much be set in place? Now of course it didn’t just jump to it’s new location overnight. It’s probably been a gradual change I didn’t notice. Hindsight always brings some insight. Over the months I’ve had a harder and harder time sitting comfortably upright. I get pain in my tail bone from sitting ‘normally’, well, I just chalked it up to Fibro making me more sensitive, after all, everything hurts, why should my tail bone be exempt.

Last night in the bath, I was washing my backside.. like normal, and realized my tail bone was really prominent and low and protruding. And why I didn’t notice this the bath before, or the bath before that, I don’t know. I do know, that’s the same way I discovered the large grapefruit sized lumps growing in my uterus a couple of years ago, laying in the bath, and wait.. somethings not right. Then you get this weird shift of insight and you wonder how you’ve been missing it up till now. I wasn’t happy with that ‘ah-ha’ moment with the fibroids that led to my hysterectomy, and I’m not happy with last nights ‘ah-ha’ moment that my tail bone is not where it’s been all my life.

How do I know where it’s been all my life? Well, I’ve been kinky for many years now, and have bottomed a lot over the years to a lot of impact play. One of the things I liked about my body/butt in regards to bottoming to spankings etc, is that people didn’t have to worry about hitting my tail bone, because my tail bone has always been situated really deep and high, and well padded. Yes, I’ve recently lost a lot of weight. But years ago I was lighter than I am now, and happily getting spanked with impunity in regards to tail bone woes.

My tail bone, is definitely no longer situated really deep and high, it’s knobby, pronounced, and pushing at the crack of my buttcheeks. How it got there, I don’t know. But I damn well want to find out as soon as possible. Googling looking for options at how/why there has been this change has not made me any less concerned. I know I haven’t bumped it, or broken it, no falls, etc.

I think it’s been pushed out, from the inside.. makes sense no? This with the worsening constipation over the last year, also attributed to IBS/Fibro makes me wonder if there isn’t something pushing/growing on my tail bone that is also pushing/growing on my bowels? Think I sound paranoid and hypochondriacal? I might too if it weren’t for my history with the fibroid – hysterectomy thing followed by the fibro thing, etc. Honestly I’m so hoping I’m paranoid and hypochondriacal, that would be the ideal diagnosis here.

Lightening doesn’t usually strike the same place twice, besides, I’ve had my uterus removed, but in an electrical storm, usually lightening strikes more than once in the same general locale. My body is bust, it’s a lemon, I’ve accepted that, or so I thought till last night, when panic and tears took over, that something else is very very wrong. Something that I can’t blame fibro for, fibro doesn’t move parts of your spine around.

This isn’t the first time discovering something wrong with my body, last time I kept hoping I was wrong, crazy, paranoid, and it was all in my head, it wasn’t. This time I’m muttering the same hopes. Let me just be loopy and confused and paranoid and no my tail bone hasn’t moved of course not, and I don’t have some mass growing in my abdomen.

Now, the trial of waiting for diagnosis begins again. Have to wait till Monday to make a Dr.’s appt. Then I’ll have to wait till the appt. Then I’ll have to wait till I can get in to have tests run… waiting, waiting, waiting.

I can cope, I have to. Nothing that can happen to my body, can be as bad as what happened to my mind when I broke down into deep depression a few years ago, and was hospitalized off and on for the severity of my depression, and my suicidality. Whatever happens, I can’t let myself lose hope like that again, and go down that even darker path. I will stay afloat with the stress of whatever this is, and deal. Because that’s the only choice you have, is to cope.

I’m coping.