A Sensitive Subject

The following post features “adult themes” that may make some of my readers uncomfortable.  I’m posting this warning now so that you may have the option to read, or not.  While I normally give no shits about anybody’s comfort level and write whatever the fuck I want, I do deem the subject matter of this post sensitive enough to warrant the warning.

Probably because I’m a hypocrite :p

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Tourette’s affects every aspect of my life.  It affects how I walk, where I am able to go and when, it affects my social life, how I am able to care for myself, and it affects my sex life.

I can count on one hand the number of times I’ve gotten to be intimate with my husband in the last 8 months.  That is fucking pathetic.  Seriously.  And it pisses me the fuck off.  It is bad enough that I don’t walk right, that I can’t get where I want to go, and that I sometimes go for a month or two without being able to shave my legs.  Now I’ve lost intimacy with my husband.

Sex is, in general, a very private thing [in Western culture].  However, it stops being private when you discover that sex is so incredibly painful, you’re pretty sure that your insides are damaged and are going to fall out of you at any minute.  It stops being private when you have to go to a physical therapist twice a week so she can manipulate your innards and try to get you flying straight again.

What I have is actually called vaginismus (Google it ladies, seriously, could do you a world of good).  While it is actually not an uncommon issue, the cause for it is completely unknown.  It can be caused by any number of things.

Mine seems to be caused my my Tourette’s.

Remember a couple blogs back when I mentioned that my pelvis was rotated and unlevel?  It’s because I flail even in my sleep.  i now sleep in a special belt to keep my pelvis in place, and while I am frequently level at my appointments, I do still rotate.  When my entire pelvic assembly is out of alignment, it affects the muscles and tendons that hold my pelvis in place (shock of shocks) as well as the vaginal walls.  YAY!  So if I can have sex at all, it’s excruciating!  YAY (not yay)!!!

Fun fact #1: When I have an orgasm, my TS goes into overdrive, and I twitch so violently that I could punch my husband in the face inadvertently.

Fun fact #2: I really miss being able to be annoyed by fun fact #1!  Can’t do it now!

And the fact that my TS affects my sex life means it also affects my chances of ever having a kid (if we wanted one).  I cannot imagine trying to carry a kid to term when one of my tics is to hit myself over the fucking heart.  I can just see myself somehow punching myself in the gut while I’m pregnant.  That would be GREAT!

The most maddening thing about all my extra ailments is that they stem from one BIG ailment.  My Tourette’s.  It is not a matter of me traveling across the country to find better doctors.  It is not a matter of lack of quality care in my current location.  What it is, is a complete lack of interest in the medical community in regards to this disorder.

My disorder is not significant enough for people to REALLY study.  It “won’t kill me”, so it is not worthy of further investigation.  I am apparently not worthy of the time of the medical community.

And that, my friends, is some motherfucking bullshit.

I am not ashamed of my TS.  My self esteem is not affected by my TS.  My weight, my glasses, my weird variety of laughs?  Yeah, those can really fuck me up sometimes.  But my TS is pretty inconsequential to how I feel as a person.  The lack of treatment I am able to get because nobody knows a damn thing about my disorder?  That is a big deal to me.

I would like to know why twitchies are so unimportant.  Why are we not considered more interesting?  Why are we not worthy of more studies and write ups in medical journals?  Why are we ignored?

No, I’m not terminal.  My TS may not kill me unless I twitch at just the right moment.  But I am a person.  I am a person who IS sick, even though I do not always look sick, or feel sick.  I am worthy of aid.  At least I think I am.

I am tired of losing things that are important to me.  My legs, my freedom, and, to some degree, my husband.  Sex isn’t a whole relationship, but it is an important part of many.  It’s an important part of mine that I do not get to partake in, and it is in large part because nobody gives a damn that is big enough to offer me any long term solutions.

It’s a travesty.

Flail on,
– Classical Spazz

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~ by ClassicalSpazz on January 8, 2013.

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