More eloquent than my other attempts at posting.

This is an older post from my private blog that kinda encompasses how I feel today and the last few. There is a different aspect for today, but that's not for a public blog (much to private family matter) that I wish I could feel comfortable being exposed in talking about..maybe when it's resolved...

From September....

I feel so isolated anymore. I'm a prisoner of my own body and it's slowly stealing my mind and what's left of me. I feel like I'm a shell of who I used to be. I feel like this will never end and will only get worse. And the stupid part is, I'm right. It's not just a feeling, it's a fact. This monster in me just keeps taking over and the only hope I have is to slow it down because it can't be stopped. It will slowly kill me over the span of my life, and it will be the slowest and most painful death imaginable.

It's this stuff that reinforces my questions about a higher power. Some divine being that "tests" us. What's left to test? My faith? I have none. My strength? I am a strong person, I learned to be, but this is shaking even that. Being strong is exhausting. What's the point of this whole damn thing? Let those that love me and are around me see me struggle through each day and suffer? How is that fair to them? Hoping that this doesn't pass down to my child? This isn't the life I want for me, and especially not my child. I guess people could say that it will teach me what my limits are. But it's pretty sad that a lot of days my limit is actually rolling over in bed, but I have to somehow manage to get out of it and be a wife and mother, and even those - I fail at. Hell, I can't even manage to be a friend anymore, because I'm too exhausted by what's going on with me. Do you know how exhausting it is to keep on subject in a verbal conversation for more than a few minutes? Could you say I'm depressed, probably. Could you understand it if you thought about it, probably.

My husband is sooo far ahead of where he was a year ago. He still struggles now and again, but I can't expect him to be perfect. We both struggle with my illness. I live it day to day and he has to watch me "live it" day to day. I can't really imagine what it must be like. Let's use today as an example. We had an appointment at 1030 this morning, my husband starts working on waking me at about 845 so we can leave at 10. Notice I use the terms starts working on. It was about 945 when I could actually get my wits about me enough to get going. I have 15 minutes and a growingly impatient husband (not that he's displaying it, but he's a man that likes to be very early) I shuffle to get a yogurt container and work on eating that while I pull out clothes that would be okay for the day. I'm the the up side of my weight yo-yo so it's looking for stuff that doesn't make me look like I'm looking bad and choking down my pills. I'm finally ready to go at 10. I give him snippy directions that he ignores because he googled it to avoid me needing to do it because I'm *incredibly* absent-minded anymore. So he goes on his way..we get there and he realizes he got the time wrong and we rescheduled. We get back to the vehicle and I can barely get into it because it's too high (it's a temporary one) he offers to pick me up and put me in it since I have to lean way back into him because my hip doesn't allow my leg to go up that high very well or easily. I snap at him "NO!" and he snaps back, don't snap at me please. Well, I can't stand the thought of me losing my ability to do stuff on my own and I don't like him offering to do things like that. I want to ask. People probably think that I'm a bit stubborn and I should be appreciative of my husband. I am both, incredibly. Stubborn to a fault and I have an amazing man that I'm married to. I do have to say I didn't argue with him when he lifted me out of said vehicle.

It was all I could do to say somewhat coherent so I could make sure my son got in the door fine before we locked it up and I went to sleep until the eldest child got home from school. That's another incredibly helpful person. That kid can give us problems up and down, but when he knows I'm having a hard time - he steps right up to help out with the little one.

My most vulnerable moments are always when either a) my husband is physically far away from me or b) he's emotionally distant. The emotionally distant doesn't happen very often anymore at all. Right now, it's a matter of he's been gone from nearly 11 hours and is still on his way back home. He'll be doing the same thing tomorrow, but I'm having a really hard time right now and him working is just not working for me.

On top of the AS and on top of the Fibromyalgia and the insomnia and extreme fatigue, I now have a complex mass in my left ovary. It may be a bleeding cyst, but who knows what it is. I guess I'll find out more next week at my appointment. But one thing for sure it that it will require surgery. That is terrifying. My last surgery, the boob one - threw me into a nasty flare up for a few weeks not to mention that my arms hurt like hell because I guess they held me strapped down or something. This surgery seems more..invasive than a boob cut. Which means I may have to stop my meds for the AS which is a bad bad thing. This last development has officially pushed me over my limit. I can't do this anymore. And you know what? I have to, I don't have a choice not to. When you're a wife and mother, the choice is implicit, you gotta find your happy face and do it anyway. But it's trying, incredibly trying.

Happiness is....

..being in bed with my husband. Just now..he rolled over in his sleep, and as it always does – his arm found me and is now wrapped securely around my waist while he snores softly in his sleep. When he sleeps and reaches out of me, my heart always swells. Most days, he’ll mumble in his sleep – grab me, pull me in close and kiss me good in his sleep.

Happiness is being loved by someone so much. I finally figured out what all the stuff is they talk about with love. My heart hurts when he’s not with me. I find myself following him around just to be close to him. My favorite place to be is by his side. I don’t know how to describe a lot of what I feel for him, but I’m starting to really really open up. He makes me happy, by just being around me. He makes me feel alive.

Opinions are like assholes, and I'm an asshole.

So on a social networking site today, a "friend" posted her stance on what should happen on the cost of medical marijuana in the state I live in. Her belief is that it should be heavily taxed in order for transplants to be funded by the state again. I am very much looking forward to the day here really soon that I can get my medical marijuana card purchase the naturally occurring plant, difuse (infuse) it with butter and bake with it as a means to control my pain and once a week the nausea I feel due to methotrexate. This "friend", I refuse to not use the quotes anymore because apparently I am confused about who my friends are, didn't like me telling her that they should tax her insulin heavily then because she is a type 2 diabetic, is easily 100-150 pounds overweight is only an option (like the medical marijuana would be for me) because diet and exercise should help control her issue, may damage her body in the long run - but diet and exercise should fix it. (I know this because her doctors keep harping on her about it and she gets pissed and switches doctors to find one to allow her to do a gastric bypass) She got super upset that the medication she would need to control a medical condition she kinda sorta brought on herself should be heavily taxed. But apparently an option for pain/nausea management for me on a genetic predisposition (on both sides) to my Rhuematic condition apparently is less of an issue.

So when I bring this up, instead of doing the "friend" thing and saying, you know what? I should maybe think about this some, she just regurgitated what she had heard on some news program. Then tells me in all CAPS, not everything is about me. Here's the question, how is an issue that supposedly not about me - in which she knew I planned on taking advantage of trying (I take 4-5 different types of pills to control pain 2-3 have dual purposes) - saying that they need to really jack up the taxing something I shouldn't take personally? I mean, it sure as hell seems to me that she thinks that anyone who plans on trying to use medical MJ are just drug addicts. Or that they can afford to pay through the nose for the MJ and then through the nose again for taxes. I'm sorry, but I'm on a fixed income. I've not worked in a year and a half, I receive 60% of my former pay in disability (no, it's not much really) my husband's pay in garnished for child support for 3 kids (1 of which lives with us, but that's a whole other blog post) and an old debt from his ex wife. There are months that I don't get to take my full prescribed course of pill therapy in lieu of putting food on the table.

Here's the whole thing that irked me about this conversation. She stopped working about the same time I did because she didn't like the people she worked with and convinced her doctor's to put her on disability. She lives in a nice home in a well to do area here, drives a newer car, flies across country or is randomly shopping all the time. But....she went on state funded health care to pay for her insulin because it was "too much."

How about this for a solution to fix the state not covering the cost of transplants. Why doesn't the state perform a check on those people that are on state funded insurance because their medications cut into their disposable income too much, and kick their ass off of it since they can clearly afford to pay for it, but would rather take trips or shop a lot.

A blog stalker walking into the light of day

I have 2 blogs, this the public one - which I hardly ever post and a private one that I really vent issues out. Most of the items in that blog need not be public information for various reasons. Mainly, it's my way to vent to the universe and kiss the bad feelings goodbye. I don't need the bad feelings typed out in a moment of rage to come back and let karma kick my ass!

I don't want to necessarily make my blog about me being sick, but I am. It takes over my life or threatens to take over my life all the time. It makes every relationship I have incredibly difficult. It's hard to be a wife, mother or friend when you just want to curl up and die. Being sick has afforded me a courtesy to really take a lot on the inside of a lot of things. When you're at home all the time with your thoughts, it's hard not to. No amount of Real Housewives or Kardashian drama can drown it out. By the way, why are those shows so incredibly addicting? I believe Bravo is my favorite TV channel.

I have a private blog I keep that I use to work out problems I'm having and I'll post some of the blogs to this one as they may just show my softer side. I've gotten addicted to playing peek-a-boo on people's lives by reading their blogs and finally decided that it's only fair that I start posting my own so they can play peek-a-boo too.

Yesterday, I played with some puppies. They are Malinois puppies. Those things are freaking phriana's with four legs and fur! My right arm is all bit and scratched up and bruised. Well, the bruising it's hard - you can look at my sideways and I bruise THANKS METHOTREXATE! I am fostering one of those 6 puppies here soon for a few months. I get to make sure it's nice and socialized and won't want to well, tear up someone else's arm later on. Sometimes I wonder about my sanity with these decisions. I was crouching down with them yesterday (which was a STUPID move) all six of them went into a feeding frenzy, one of the razor teethed fools decided to munch on the top of my right foot too.. Anyway, back to the point - crouching is definitely not on the list of activities I should be doing for anything length of time, if at all. I'm paying for it today. Not only does my arm hurt but I can barely sit down or walk. I've been popping percoset today, so my consciousness is a bit foggy to boot. The husband has had to work a swing shift today which makes me the adult in charge of the two kids that live here, one his the other mine. Luckily, they are used to me not feeling well.

On days like today when I'm mostly bed ridden, it starts to make me think. I think about how isolated I feel. Due to all the medication I take and the fact that this Fibromyalgia bullshit gives me lapses in awareness we've decided that I shouldn't drive. So I don't work, lost all but one of my friends, don't feel well enough to get out of the house most days..it's no wonder I feel isolated. I look forward to the days I can convince my husband to take me to lunch or breakfast on his days off, I get out of the house and I get to eat! But the price I pay for it is I look sick all the time. The pain gets worn on my face, I'm always pale and I always have dark circles under my eyes. I get the pity looks, I hate the pity looks. This may be a good time to mention, I'm not really a people person. I get along better with dogs.

Speaking of, I have a German Shepard. Her and I are best friends. She was given to me just this past Christmas and we are pretty inseparable. She is constantly at my side, napping with me, laying on the floor next to me, in the kitchen as I'm cooking. Most people would be annoyed with this, but I love it. It's incredibly nice to feel her constant love and affection. She heels to my right side in the house at all times, and her and I are working on her heeling on our walks. She doesn't do bad, but since she is on the bigger side and can be considered a "bad breed" I want to make sure people see she is under the influence of a good pack leader! By the way, there is not such thing as bad breeds, there are just irresponsible dog owners.

This is all over the place and I will close for now. I am going to pull some of my private blogs postings over this blog as the items in them need not to be necessarily private - but I've decided not to cultivate a public blog, until now.