Missing the Fun Times

Missing the Fun Times

11-24-11

I wonder what its like to have fun.. I mean, the Richard Cheese concert was fun. I have fun with my girlfriend... But I used to have fun all the time. Now, it's mostly misery with little bits of fun.

 I guess this is what is being an adult is like... or maybe just an adult with MS. I am not sure if I find that acceptable. I have to look into what I can do to change that. Life has become a drag and MS is the **ONLY** reason for it to be a drag.

I mean, come on, I have wonderful significant others who love and care for me, who are willing to put up with my bullshit, especially while I am on the steroids, because let's face facts, I am a total fucking bitch right now.... more than normal. Sure, the MS is fucking my life up, and the ensuing bills of a medical nature are piling up while the hospitals treat me like shit and the treatments fill me with poison, but you know, I have to learn how to look at it all as just a thing. Because it *is* just a thing.

For fucks sake, I AM NOT MS. No matter how much it seems like it right now while I am riding high on the solumedrol, unable to actually *do* anything... unable to actually sleep and rest properly... All I can do is think, and thinking is dangerous.

Some of you may remember this post as a series of posting from my fetlife. That's because it was. It was something I decided to share with the rest of the class, too.

The Glorification of Hangovers and Puking All Over the Place

Glorifying Hangovers and Puking All Over the Floor

11-18-11

I miss being unfettered by medication. When I could go where I wanted, go get shitfaced with friends, and so long as I wasn’t driving and had a place to stay, or had a DD, everything was copacetic. I could get fucked up and there were few worries about it, save if I had to work the next day.

Now, though, I am barely cleared to have a glass of wine with dinner for fear of it fucking up my medications and destroying my organs.

I would like to say that I rarely ever went and got fucked up. I didn’t like minting the pain coin of the hangover the next day (even if I drank water and re-hydrated I had a fuzzy head and was generally crabby). However, I did enjoy being able to even go get tipsy at a concert to deal with the crowd and be able to loosen up and enjoy myself. I did enjoy being able to go to a friend’s birthday party and drink toasts (and get totally toasted sometimes… sorry about closing out that one party Timmy, Tim, and Sarah). It was maybe three times a year, if that. Before getting sick, I think the last time I had gotten fully fucked up had been that party I just apologized for.

I miss being unfettered by medication. While having a set schedule can be nice, having the ability to change it for work can be helpful. Being able to change it for play can enhance the quality of my life. Being able to change it up just because I fucking WANT to can just be nice.

I miss being unfettered by medication. I miss being able to stay at my boyfriend’s house without having to worry about if I have my meds with me. I am paranoid about always having my pill bottles on me because sometimes my brain hiccups and I might lose my pills. These fucking pills are expensive, and I am already enough of a financial burden on everyone around me…

I miss being unfettered by medications because they are so expensive. I miss not having to worry about how much a single pill will cost if I run out of it and need more before the insurance will cover it.

I miss the “good old days.”

What’s funny is that I swore that I would never be one of those people who would pine for lost days. The now is all there is, after all. We can affect the outcome of the future only so much. Living in the past is something I have done, and there is no life to be had there. The future isn’t written, and I have spent quite a lot of time fantasizing about that. The present is where change can really and truly be affected, and here I am… talking about what I miss…

Well, the truth is that I am fettered by these medications for now. I might be off of them someday, though I doubt it. I can miss the old days all I like, but glorifying them will only depress me. However, writing out the pain helped… It was like cleaning a festering wound. It stung like hell, made me cry, but it was a good hurt.

Healing can really suck, and not in that fun way filled with tongue, teeth, and spit. :D

Everything Has a Cost

Everything has a Cost

11-18-11

It took quite a while for me to learn that everything has a cost, and that it’s not always readily apparent what that cost will be. Most times, we only see the cost in money, or perhaps the time that we spend away from our friends or families. Perhaps time away from doing the things that we would much rather be doing is the cost that we really see. But when the cost is coming from one’s self, one’s pound of flesh, that’s when it gets to be a cost that hits home.

Oh, when initially I heard that piece of imagery, I had a kinky vision in my head of chains and whips, leather and sex. Some musk, sweat, cum, pain, semen, begging, moaning, blood, dominance, submission… you know, fun. 

For a time, I thought I knew it all. I thought I had a handle on what I could do; what I could put my body through. What I have recently found, though, is that I knew nothing. What I performed in the bedroom/kitchen/living room/sex clubs/cars/friends houses/and various other places I am sure my parents don’t really want to read about in the name of fun, sex, and consent had nothing to do with that pound of flesh. It had nothing to do with the Cost of living. It had nothing to do with the Cost of being. It had nothing to do with the trade-off… but then…

I got sick.

I got really sick.

All that energy that I had was suddenly gone. It was all used up. Everything that I used to have the energy to do, to endure, seems out of reach to me now. Doing things that I used to take for granted as every day, like waking up, takes more energy than it seems that I have each morning. Getting out of bed to go to the bathroom in the morning seems like more effort than it’s worth, except for the fact that pissing in the bed has never really been a Kink of mine. It’s like I have fallen down in an energy sink, and I am not quite sure how to climb back up. I am not entirely sure if there is any way for me to come back up, really. It might be one of those situations where it takes more energy than I have to get out of it.

But I am still me. I am just now faced with the bill, now. I look at the Cost of living, and it isn’t paid in money. The stress of living and dealing with all those things that I used to keep together I now have to pay with a coin I mint with my own body. I pay that bill with pain, and I am unsure of how to break that cycle.

I am unsure if I am able to.

The question is if I am going to break under this… this… this… SHIT… or if I am going to be able to roll with it and adapt.

Well, for now, I am adapting, though I feel brittle. That might just be the time of year, and all the fluctuation going on. I have a good, secure, steady, and stable support structure. I am on mood altering medications (which are the only reasons I am even *remotely* stable at the moment) which also double as migraine suppressants, to help me with my depression. It’s just so much to take in.

I’m twenty-five. Everything that I had planned for and thought to achieve, hoped to achieve…

Some of it can be salvaged, but a good portion has to be scrapped because this MS SHIT (!!!!!!!) has seriously fucked my brain up, and is still doing so. Some cognitive therapy will help, I think, but it’s apparent that the Universe seems to have Other Plans for me, regardless of whatever I wanted.

My views on That haven’t changed much over the years.

So, now, I get to re-learn how to deal with everything, since most all of my short-term coping mechanisms (the way I deal with crowds until I can get out of them and someplace “safe” to do my jewelry/write/crochet or whatever) I either don’t do anymore (like smoking/drinking) or can’t (drinking/suppressing) do anymore. It’s frustrating. It’s enough to make me almost just want to stay at home, not leave the motherfucking house, and just stay there, learn to sew, and create clothing/jewelry/books/accessories/etc and let other people sell it. I think that may end up being close to my overall plan, actually… except I don’t really want to become a full out hermit.

I want to be able to go out and have fun again (including the kinky fun, even if that means I am in the top side because I am physically barred from the bottom) without worrying if my going out is going to stress me to the point of having an MS-episode.

Maybe once I start my medication (copaxone) and I get into some sort of routine with this bullshit, I will cease to feel like everything is up in the air.

I hate being afraid all the time. The stress of that happy horse-shit is being minted on a regular basis, and let me tell you, I am getting sick of all the fucking headaches.

So yes, I am a bitter hag. It might change. I hope it changes. I can also see me staying this way. I think a part of me will always stay a little bit bitter. I am writing it quite a bit. I may even share some more of it besides this journaling thing. I just hope I can grow beyond being just a bitter hag. Maybe I can grow to be a bitter hag plus something else. Or, better yet, I can be something else, and occasionally a bitter hag. Maybe even, in time, the bitter hag part will just be an after-thought.

Perhaps one day, the bitter hag part can be left off completely.

But from this vantage point, I doubt it.

I doubt a lot of things.

Things are very dark here, even though people keep telling me that it shouldn’t be. After all, it could be worse.

Yes, but it’s pretty fucking bad as it is.

God as Love

Love God

Love is the meaning of all
In all its forms it is a sacred thing
To deny it because
It does not suit dogmatic thought
Is abhorrent to what
God is supposed to be

The creator is supposed to be Love
At least that is what I was taught
When I was small and told to listen
To the Holy Spirit Within
Though as I got older
That whispered advice from within
Was no longer fitting with
What I was being taught within
The framework I was being taught
Was the word of God

According to the word of Man
Love is unyielding and uncaring
Love is hateful and cruel
Love is rigid and spiteful
Love will cast you out for
Breaking the most trivial of rules

I reject the word of Man
I will listen to the whispers within
As I was taught when I was small
The Holy Spirit dwells within me
And tells me that Love is everything
Love is everywhere
Love is all encompassing
Where love is, Creation is
Where love is, the Holy lay
Love in all its forms
In adherence to Dogma or not
Is beautiful and is deserving of respect

I worship love in all its forms
Wherever it is found
I aspire to love where I find it
I aspire to love with whom I find it
If God is Love, then we’re cool.
If not, then Love is my God anyway
I will raise my ideal up to be what I need

After all, that’s what people have been doing for years

9/25/11
form: free/blasphemous


I wrote this in the midst of bitterness and pain that I am only now starting to emerge from, sort of. This piece still resonates. It probably needs a little more work, but I want to share it anyway.

Paying for Stress

I have recently found out that I have to pay for stress, not with gray hairs, wrinkles, or other signs of age, but with pain. Whenever I come down from an excessively stressful situation, it seems, I get to deal with migraines and other assorted headaches.

Last week, my husband became very ill. I freaked out and over the course of the day managed to internalize enough stress that by the end of a 20 hour day, I was having mini MS-episodes complete with electrical tingling, spasticity, and returning brow droop. Calming down helped all of those things go away, but the slightest return of stress started to bring them back.

Once it was clear that he was improving to the point of stabilization, I finally began to calm down. Unfortunately, I was out of town when the migraines started to hit me. I Imitrexed the first one, but I couldn't do the same to the second one due to the fact that it was a travel day, and I couldn't lay flat in the dark room for a sustained period of time, due to check out times and such, so I just dealt with it. Some tension headache when I got home helped.

Then, the next day I kept getting intermittent headaches. They would come and go, and my ability to focus would be impaired. I would be engaged in a conversation only to lose track of the word I was saying. It quite worried my girlfriend, whom I was hanging out with at the time.

Then, today, I kept having flash headaches. They would hit suddenly and go from 0 to 4 in less than five seconds, last for 1-15 minutes, then go away. I managed not to collapse because of any of them only because I kept near the bed the entire day. However, I didn't allow myself to drive or operate other dangerous items, such as the stove.

Here's hoping that I have finished paying off the stress from last week. I disliked being next to useless today. It wasn't my idea of a good time. 

Getting my Jewelry On

So, I haven't been doing much with my jewelry lately. This is changing. I am posting again on my Etsy. I have also been making new stuff. Look for that on the Etsy too!

In addition to the Etsy, I will be getting a separate blog going for the Crazy Chain, I think. Hopefully I will be able to keep it up. :)

Things have been tougher than expected lately. I am still sorting out and processing things. Once I have a decent handle on how I am feeling, I am sure that I will have a plethora of postings.

Until next time...