Pre-New Doctor Jitters

                    I am afraid.

                    I am afraid that this doctor will think I am a fat, crazy bitch who is lying about my pain. I am afraid that he will be dismissive towards me and brush off everything that I say is happening to me. I am afraid that he will not see the swelling for what it is. I am afraid that all he will see is the fat and not the person that is suffering with all this shit going on. 

                    I am tired of doctors not being able to help me. I am tired of doctors not being willing to help me. I am tired of the pain. I am tired of feeling sick all the time. 

                    I hate not being able to do everything that I used to do. I hate not being the person that I used to be. I hate not being the person I want to be. I hate not being able to go out and do things. I hate not being able to stay in and do things. I hate being infirm. I hate being weak. I hate being brittle. I hate being glass, and I detest being treated like glass.

                    I miss all the things I used to do. I miss work. I miss having all the energy in the world to do everything that I wanted to do. I miss making jewelry. I miss having full use of my hands and being able to trust them. I miss being able to trust my brain. I miss being able to trust my senses. I miss my memory.

                    I don't expect miracles. I doubt that I will ever heal all the way. I can only move forward, but I want to move! I want this limbo to go away. I want to actually find out what is going on with me so we can do something about it. I hate not knowing. That alone is driving me insane. It eats away at me bit by bit every day. 

                    Hope hurts.

                    Expectations lift me up only to drop me from a greater height. 

                    I try not to expect much because then, when I am let down, the bitter tears won't last quite as long.

Happy New Year or No Psych Meds For You!

                    So, the insurance denied the Buspar, which is bullshit. They require it to be a 90 day supply, but we don't know for sure that it will be the final dosage that I am on. I mean, I can probably guarantee it will be the next 90 days that I am on it, but Dr. Ngo is reticent to do that. I see him this month, but he doesn't issue scrips without seeing someone. Withdrawls from that drug are going to be nasty if it is sudden. I do have some of the 10s left, so I can use those to tide me over for a few days. I will call the insurance tomorrow and tear them a new one, since I am fairly certain they are not working today and this is just an auto-reject.

                    Happy New Year! No psych meds for you! 

                    Happy Birthday! Here! Have some psych med withdrawls with no step down! 

                    I hate motherfucking insurance bastards. 

                    What I am fucking pissed about is that the fucking pharmacy called me to auto fill the refill of Buspar. I know that they did! So, that means that they knew about this denial for about a week. This is the first I have heard of it. If they had already faxed my psychiatrist, then he has either ignored the fax or he never gotten it. My guess is that the pharmacy didn't fax him since it was an auto refill. However, the pharmacy is notorious for not looking for the ninety day perscription. I am seriously tempted to call right this fucking second and find out if there is a ninety day scrip in my file for this fucking drug.

                    My paranoia is seriously high. It's one of the reasons I am on Buspar in the first place. The anxiety that I have has been dampened by the drug. It's because of the danger posed to my liver that we haven't increased it. Hell, I am lucky to have gotten back onto a fucking bi-polar med. 

                    I have to explain in terms of one syllable or less to these motherfuckers that I am not necessarily on my functional dosage. 

                    I sincerely detest dealing with these fuckers. 

Holy Rollers Overview/Review and on Letting Go of my Past

                    Before going to bed, one of my sweeties and I watched this documentary called Holy Rollers. It's about a gigantic (to me) team of Blackjack players who happened to be Christian (a lot of them Ministers) that go all over the place and play Blackjack. This documentary crew followed them around for three or so years in order to find out how they do it, but they showed remarkably little about their strategy. I mean, they talked a little about the arithmetic involved, but they didn't mention what strategy charts they use, or what games they play. They didn't mention how the teams are structured beyond the hyper-simplistic backers, managers, players scheme. 

                    There were times when we were watching it that he and I just laughed our asses off because we either resemble (in his case) or resembled (in mine) the attitudes of the players that were featured. It was obvious to us that the documentary was focusing mainly on the players that were either out by the time that the production wrapped up or were burned by a majority of casinos to the point that they were no longer able to play. A good portion of those particular people had also jumped into the game as backers themselves. 

                    Something that alarmed both of us is how insular the group was. They had a non-Christian player on the team and when a person on the team accused him of stealing with no proof at all, they fired him. The reason the guy had for thinking the non-Christian was a thief? The Holy Spirit told him so. This incident occurred during a point in time that they hadn't closed many bankrolls (made their target profit goals to distribute money to investors and bonuses to team members) so paranoia was starting to run high. 

                    The reason this bothered me? Similar things have happened when the streaks were not what were expected. It affected me directly. That's all I am going to say about that right now. However, I can safely say that no one on our team was ever fired for being a non-Christian. 

                    I like that the documentary made it a point to note that there is high risk involved in this. The variance of the game gets to be such that if play isn't perfect that the money can just drain right back into the casino that you are trying to take it from. Apparently, the team grew so fast and the players didn't keep up their play practice outside of the casino, honing their count, that the entire team suffered this hitting of the human side of the variance pretty fucking hard. That being said, we don't have enough information to extrapolate how many players there were or how many of them became complacent in their counts. That lack of information was deliberate. After all, these people don't want anyone else to be able to take their model and repeat it.

                    There are times when I seriously miss my old gig. It seemed like the situation with the people I was working with was tailor made for me in certain respects. I was valued for my skills and liked for me. I was not just a cog in the wheel, though, I kind of was in the sense that another person could be trained to do a majority of what I did. However, I did something recently for my former employer and the stress of doing that thing with all its associated general disorganization made me realize that what I used to do was about ten times more stressful than that. I used to eat the type of stress that was driving me crazy the last week for breakfast and not even notice it. I know that I couldn't go back to doing it. So, I have a bunch of interesting stories. I have to close that chapter in my life and accept that the likelihood of me returning to it is extremely low.

                    But there are days when I really do miss the money and the comps.

                    

Overdoing and Breaking Myself

                    Overdoing things for me shouldn't take so little effort on my part. Simply walking shouldn't have this sort of effect on me, but it does. 

                    What is this effect?

                    My muscles are on fire. My muscles lock up. The tension that goes through them from simply moving normally sends a headache through my skull that makes me want to tear my eyes out. The overall body ache that I have is debilitating and makes me want to cry. I have to stop moving every so often to wait for uncontrollable muscle spasms to stop. 

                    Well, that last bit is kind of an every day thing, but it is made worse by the muscle lock ups that I am currently enduring simply because I was sick of doing nothing. That's what I get for not wanting to be a lump. Of course, it didn't help that I had been doing some cleaning at home the previous two days, though it was in short, small bursts. Everything that I wanted to get done is still not done and not likely to get done anytime in the next few days because I broke myself again. 

                    Dammit.

Giving an Expletive Deleted or Rollercoaster Ride from Hell

                    This blog has been dead for a while. I've let it sit here, taking up space on the internets. It wasn't anything all that special. It has served its purpose of being a platform for me to shout my agony into the world. Not that many people seemed to give much of a fuck. 

                    That's alright, though. 

                    I don't seem to give too much of a fuck, either.

                    I'm working on giving a fuck, though. Giving a fuck is what can keep you going. Giving a fuck is what keeps a person from doing stupid shit consciously or subconsciously. I really, really, want to give a fuck. I have a few good reasons to give a fuck, and those reasons are the only reason I am still around.

                    Wow. That sounds emo as hell.

                    Seriously, though, things have been swinging all over the place and it has been hard to wrap my head around various events that have unfolded. 

                    First, I was diagnosed as having Multiple Sclerosis. I manage to nearly get my head wrapped around that just as I manage to get into see the MS doctor, which brings me to the second thing: He says that I don't have MS. He thinks that it is some sort of Rheumatological problem. He orders a bunch of blood drawn, ten vials worth, and orders me to go see this Rheumatologist in town. Getting that appointment was a nightmare, and I had to wait over three months for that appointment which is now about two weeks away. Third: I go back, and he thinks it might be something called neurosarcoidosis (because of some tests that came back + symptoms) or possibly Rheumatoid Arthritis, but to be sure, we should get another test done to see where to get a biopsy. My insurance agrees to it, but this secondary approval company called Med Solutions denies it due to lack of biopsy. 

                    Go ahead. Read the previous sentences again. I'll wait.

                    Anyway, I get to arguing with Med Solutions, my insurance, the doctors offices, and whoever I have to to get this test done. It still hasn't been done. The patient's voice counts for dick all in this process. That really makes me feel great. I am just the slab of meat that these fuckers shuffle around. 

                    Now, during all this other shit? I finally decided to get some mental health help because of, well, various reasons that I may or may not get into at a later date. June I got a counselor. August I got a psychiatrist. The psych meds he put me on, though, fucked my liver numbers up, which were coming down from the treatment that got me out of the fatigue fugue flare up that I had in March. My other doctors made him take me off of at least one of the meds (the one regulating the bi-polar, which was working, by the way). The liver numbers evened out, but I was sent to a GI doc to help watch the offended organ. He ordered a bioposy of the liver, which we tried to get med solutions to take as the biopsy to get the Test mentioned above approved with. Well, that didn't end up working because my biopsy came back with just signs of NASH ( http://en.wikipedia.org/wiki/Non-alcoholic_steatohepatitis ) and not anything that would get that Test approved. 

                    My GI was pleased because it wasn't even as bad as he had thought it was going to be. While I knew I should have been at least pleased that it wasn't worse, I was frustrated as hell about the Test being denied again. 

                    Being in diagnosis limbo again (because I am not actually diagnosed with neurosarcoidosis or Rheumatoid Arthritis) is hell for me. I like to know what is going on so I know what to expect. I want to be on the right medication, assuming I can take any of the medications that I need to be taking. It's a frustrating place to be. I feel helpless and it has made me spiral more than once. Because of the liver bullshit, I haven't been able to be medicated properly for my mental and emotional instability, so that has been a fun rollercoaster ride all on its own. 

                    I'm falling apart, and I cling to the reasons I have to give a shit. All this other shit makes clinging very hard, some days, though. Those reasons? My husbands. They hold me. They keep me sane(ish) and when I lose it some days, they are there to help me pick up the pieces again. So, yes, I cling to them and do my best to give a shit day to day because otherwise, I'll shatter and what'll be left will be something and someone no one wants to be around, including me.           

Time to Flog Myself Back Into Gear

In the last half of 2011, I got sick and depressed about it. I felt like what made me *Me* was threatened. To an extent, it was, and is being threatened and put under attack by a disease, but I am sick and tired of being sick and tired.

I have had to come to terms with the fact that I will be living with a disease that no amount of diet change or lifestyle alteration will cure (at least that we know about). I have recently started a treatment where I inject chemicals into my body every single day, and I have no idea exactly what these chemicals will do to me later in life. They are supposed to, in part, prevent too much loss of brain matter over the course of my life and struggle with this disease, so, you know, it's not *all* bad. However, it's still discomfiting to have to do this at the ripe old age of twenty-six.

In less than a year I have gone from a fat, but vibrant young woman, to a young woman trapped in the body and brain of someone who has had a lot of the curses of old age hit all at once. What most people experience gradually over the course of years and years has hit me all at once...

Everything has felt so uncertain... but since I have started these injections at the start of the new year, it is almost like a little bit of control has come back into my hands. I am actively doing something to work against my body attacking itself, and with every one of these injections I feel like I am waking up from some long nightmare and coming back to myself.

While this body no longer fits me properly, and I can no longer do everything that I once could, or even hoped to do, I have a clearer sense of myself than I have since the migraines started last June.

I have to make adjustments in order to whether what this disease is going to throw at me, and, more specifically, whether the treatments that patch me up after a flare up. The last run of IV steroids I had to have in November kicked me up into the realm of the diabetic momentarily, though my sugars dropped down, thankfully. Diabetes is more than likely a foregone conclusion for me at some point in my life, and this fucking disease has made that spectre move closer than I want it, and I want to do whatever I can to move it the fuck further down the line, if I can. That, mainly, means losing weight.

More than the threat of diabetes... I want to be lighter. The last MS attack affected my mobility. I am still on the cane due to equilibrium issues, and none of my sweeties can pick me up.

Perhaps this should be up at the forefront, but it's the thing I think of last... I want to be healthier for me. I want to lose the weight for me. I want to be healthier so that I can do everything that I am *able* to do, and perhaps increase what I am able to do just by having a body that can easier whether physical stress...

Which brings me to: How do I lose weight without triggering a flare up? Or, am I fucked regardless of what I do? In that case, should I go more extreme and do hard-core veggie/protein with as much exercise as I can manage? Or is slower better? I can maintain the lifestyle change with only some issues, but those I can deal with.

I will probably be doing this largely alone when it comes to my relationships. I will have the moral support of my family, of course, but I doubt anyone will do it with me.

I suppose one way to find out if the slower way to lose weight will put my body under stress and trigger an attack is to do it...

And the fear grips my chest and makes me want to scream in frustration as a part of me cries out, "NoNONONONONONONONONONONONONONONONO!" I can't blame that part of myself at all. Every attack I have had has left me more fucked up... even as it patched up the immediate problem. It never quite brought me up to even as good as what was there before the attack, and I have only had two major documented ones.

According to my Neuro, the solumedrol might not have even worked as well as the first time...

So...

Decisions.
Crossroads.
An end to this Unacceptable Limbo.

It's time to do my evening injections. I also have to clean out the fridge, plan what needs to be picked up from the grocery store. The new eating plan starts tomorrow.

Bright Sides... Just another day Dec 13, 2011

**Warning** The following touches on some stuff that you may or may not want to read. I'm Depressed. Deal with it. Don't read into it beyond what's there. This is me just bleeding some of it off as a release mechanism. It actually helps, okay? I'm not even close to doing something stupid, or irreversibly self-destructive.




I was doing some research on sewing machines, today, and gave my father the list of the ones that I very seriously liked.

I did some research into how to use a sewing machine, as well as sew different types of materials.

I managed to start and end a fight that needed to be had, but I still hated to have.

Cleaning still needs to be done, but I have no energy for it. Fights still seem to brew no matter what I do.

Medical bills are piling up... and there isn't anything much I can really do about it. Our former insurance didn't cover as much as they told us they did, and now things are coming in all at once and apparently past due. Lovely calls that I get to make early tomorrow morning.

I get a new niece tomorrow.

I'm just so tired of the fighting. I guess I will go do the bloody fucking dishes or something. Maybe if I kill myself cleaning something it will be enough.

Just to be clear: no one is saying anything to me to make me feel this way. It's all me. It's always me. I am my own worst enemy in this, and no one is holding me to the standard that I am holding myself... and finding myself wanting.

I'm sorry I got sick. I am sorry I am not pulling my weight around here. I apologize for not being able to do the amount of work that I used to do. I am sorry that I can't function the way I used to. I am sorry that my brain just shuts down when I look at all the bills piling up. I am sorry that I can't just bounce back from everything the way I used to.

Sometimes, I wonder if it would be easier for everyone if I just wasn't around... but I am not quite ready to not be around yet.

I am trying to keep busy and maybe even learn some new skills. Perhaps I will even be able to make some of the things that are floating around in my head, before my brains finish deteriorating and I lose all use of my body...

Yeah, happy thoughts.

Waiting on the copaxone, still. I got a call from the pharmacy people and they said it would still be a couple of days, and no word on how much it would actually cost.

More money I am not earning.

All I do is cost money to everyone around me.

I just can't seem to keep my focus on the bright sides today. Something having to do with getting into a fight every time I open up my fucking mouth.

Fuck MS.
Fuck it all.

Bright Sides of December 12

This weekend didn't have many bright-sides for me. I was in a nice little depression there, just wallowing away. It didn't help that every morning I was waking with a headache I just couldn't shake. I was also kind of killing myself with cookies.

Garth took the cookies away. I am pretty sure that's a bright side, but I am kind of cranky about it. I want a cookie. This might mean I am currently a cookie junkie.... "Man, I just need a snickerdoodle. Just another snickerdoodle, man. Please? It's the last one, man!"

I had my MRI this morning. I took my anti-anxiety medication and it made me loopy as fuck, but it made it very hard to be depressed, even with the prospect of my cervical spine lighting up like a Christmas Tree. I am going to take this as a bright side today.

Watching Tron Legacy and enjoying the Daft Punk. About to get to the scene that steals the show, where, funny enough, Daft Punk is in the scene! :) Bright side.

I am going to be having some shake n bake chicken and some rice, which is exactly what I am wanting at the moment. Bright side.

I think I shall be getting husband cuddles tonight. Bright side.

I am pretty damned mellow right now... it's better than being depressed. Bright side.

I Hate Myself

I Hate Myself

12/11/11

                I hate myself.

                This is not a new thing for me, by any stretch of the imagination. In fact, this seems to be somewhat of a recurring theme in my life; which is yet another thing I am unhappy with myself about.

                This constant cycle of self-hatred is something that has defined my life for many years; since I was in elementary school at least. While most kids were learning how to socialize with one another, I learned how to loathe myself and hate other people. This bitterness that I have been fighting against was born during that time in my life. Its roots are deep and every time I think I have uprooted it, it comes back, fully flowered and as strong and vibrant as it ever were.

                All of my self-destructive tendencies are coming up to the surface. I manage not to give into most of them, such as picking up a pack of smokes or cutting on myself. Both of those actions would be addressing the same hatred and urge to destroy that which I loathe, albeit slowly. Drinking is out, dive to various medications, and I have written about how that very has been riding me as well.

                And why don’t I give into the old habits? Why don’t I gave into the incessant urging of the monkeys riding my back? It would be easier for everyone around me if I just quit fights against the old demons, right? Wouldn’t I be easier to live with?

                No.

                Those habits of self-destruction ruled me when I imbibed in them on a regular basis. Besides, since kicking them, why would I want to go back? There are so many more options when it comes to self-destruction. Why repeat myself? That would be boring.

                Seriously, though, what I really want is to not hate myself. It almost seems like too much to ask of my own psyche, considering what’s going on, but that’s my goal. I thought I had actually reached it for a while there, but this illness has taught me differently. This illness is teaching me quite a bit about me; a lot of which I can’t say that I like all that much.

                I suppose I could end it, but that seems too damned fifteen year old girl for me anymore In reality, things aren't that bad yet. I have an excellent support structure, and I currently have health insurance. It’s damnably hard to look at the bright side of things, though, when the pain is constant and you cannot even plan for the next day. I have to re-learn what my limitations are. Just knowing that there are very real limitations on what I am capable of doing at any given point in time is bloody fucking depressing.

                I know that I need to cut myself some slack and allow myself time to heal. After all, I just had an exacerbation a couple of weeks ago and I just finished off the oral step down steroid regimen. I acknowledge the full possibility that this canker-blossom of self-hate might very well be fueled by the steroids, but it still stems from my own inborn self-loathing.

                Writing this out is helping a little bit. At least, it is making me feel like I am actually doing something, besides laying around like a lump.

                Mommy-Ne and Bryan Paul were going to come over and help me clean today. I cancelled due to the headache I have been down wise most of this weekend. The headache is probably due to Cookies. Cookies one evil. Cookies are just the latest way to kill myself, I think. It wouldn’t surprise me if the steroids plus cookies have thrown me into diabetes. That fact does nothing to make me care for myself any more than I already d. Part of me just looks at this as another betrayal.

                Yes. Another way I betrayed myself.

                Selfish. Stupid. Short-sighted.

                Well, I know what needs to be done, at least partly. Carbohydrates are over-rated anyway… right?

Vitriol Well (poetry)

Vitriol Well

This well of bitterness

Runs deep and rich

Draw deep from it

At your own peril

For fear of its poison

Infecting your very being

With vitriol and hate

It tastes sweet at first

That’s its secret delight

No one can resist it for long

Everyone comes back for more

Of this sweet and bitter poison

Form: free

10-9-11

Becoming a bitter hag is an easy thing to do. I can slip into the role so easily. There's quite a bit to be bitter about. It's one of the reasons why I have started to try to focus on Bright Sides each day. Some days are easier than others. 

When I wrote this poem, this was me trying to shuck the bitterness. At the time, my diagnosis was only a couple of weeks old. It was still surreal and I was still unable to sit down and read much about the disease without bursting into tears. I wasn't (and am still not entirely, if truth be told) very rational about the entire thing. I am a little more stable about it now.

Time does that. 

It helps acceptance just settle into your bones. 

It makes heavy burdens a little easier to carry...

... Still trying not to turn into a bitter fucking hag.