Finding a Reason to Keep Going

I wrote this in 2013:

What is there to hold on to when it feels like there is nothing left?

So often this is a question I come upon with the path I have to walk. What am I supposed to do when it feels like I’ve tried everything, the doctors are at a loss, and my life just keeps becoming less.

When I say less I’m referring to the idea of quality of life (QOL) for people with chronic conditions. We still can have an amazing QOL, but rarely does it match up in style when compared to a healthy QOL.

Part of Lupus is a mind game. The sicker I get the more grey my world gets. The more grey my world gets the more trouble my body has fighting off the Lupus and the sicker I get. It’s a cycle. So at which point can I or someone who cares reach through the grey and drag me out? At what point does the depression level affect the state of the Lupus flare, rather than just being a natural reaction to the state I’m living in at the time.

It’s remarkable how going through this disease really is a cycle.  I ws saying so close to these exact words earlier to my BFG and the Singer. I don’t understand  why healthy eople just don’t quite see it the same way. Let’s see if I can find better words as well as way to combat these feelings while sick and cycling in a post to come soon!!!

Finding ways to stay positive in a seemingly downward spiral that feels impossible to stop: 2016 Post to come!!

My Britney Spears’ Moment

Remember when Britney Spears buzzed all her hair off and went totally nuts for a while? Well….

Yeah I know, I shaved my head at least 8 months ago at this point. But the shaving my head isn’t so much the imagery I’m trying to conjure, more the going totally nuts part. Maybe more specifically, an obscenely short lived marriage. Mine made it 7 months, how about you? Two weeks shy of dating for 4 years and a few months shy of being best friends for 8 years. I walked away from my marriage. 

I walked away from my future completely. It’s not like I don’t understand that I can get a new future. Believe me, with every diagnosis I have to reinvent parts of me to move forward in my life. But I never thought this would be a future I would walk away from. I had a husband who despite being dreadfully human; loved me and tried to take care of me, family that is ALWAYS there, professors who were possibly willing to work with my health conditions, an actual decision about what I want to do for a living (if I can hold a job that is), even knowing I am infertile I was comfortable with my next steps I was taking to make a family. I had every part of my life moving forward. Yet somehow I was still drowning and I hadn’t seen any shore yet. I’ve realized, that when it came down to it, I didn’t have any of those life thingies on lockdown. Starting with what was inside my own head all the way to what was going on with him in front of my eyes.

He needed help. Instead of helping himself, he placed me in the role of a parent practically, forcing me to carry him as he ever so quickly was spiraling into the Doldrums. Holding him up was like trying to keep the sand from falling between your fingers after a wave splashes over your hands. Not to mention my hands can only take so much before they cramp up;) –Spoonie joke!

He was so very scarily violent before medications. Only a few of our friends had seen him like this and never any of his family. The friends who had to sleep over in blankets outside my locked bedroom door to keep him from taking the door off it’s hinges to get to me while I was sleeping. Friends who would stay for days, because it wasn’t safe to leave me alone with him or him alone with himself for that matter. But once the medications started to work, he became somewhat functional. Someone who could even-out from his erratic emotions and behavior at times. He became a friend again. I still walked on eggshells, but I didn’t have to have protection outside the relationship anymore.

He prevented me from being able to be me, when the person you are with forever is supposed to strengthen the things that make you you. That was still a problem.

I’ve known I am polyamorous since I was in High school. I wasn’t sexually active until after High school, this gave me a number of years to understand what I felt about this. I knew part of what I was losing myself in with husband was denying the poly part of me. (I must point out that marriage does NOT affect the ability to be poly) Husband and I had always had an agreement that we would be poly, (I, already being so when he met me, and he was going to work on it for himself) but we needed to give each other some focus for awhile as per my policy with every new relationship. Awhile was supposed to be months and it turned into 3 and 1/2 years. Not kidding. With my health issues and husband learning to be my caregiver throughout the flareups and downs, his mental health issues coming to the surface, me having to go on Chemo, and our struggles with becoming adults in the outside world; there was never a good time to start moving our relationship into poly. But he did finally make a deadline after he proposed. I told him I had to be able to start moving into poly life again or I had to consider he wasn’t who I was supposed to be with. I thought that the marriage was a wonderful time for him to understand that he was my primary and another person would never be the reason he could lose me. He seemed to feel this would cement his “ownership” of me. I unfortunately didn’t realize this was how he saw it at the time. He set a date for a year after engagement to start opening the relationship and date other people. When that date rolled around he seemed like he had been hit by a semi truck. He even implied we hadn’t discussed it, ever!? Luckily I was able to get him to admit the bullshit behind that argument, originally anyway. Now that we are separated he is saying all sorts of things to previous mutual friends.

That’s the way break ups work though right? Especially as a girl with mostly male friends… They mostly sided with him. But that also tells me they are believing him when they’re told by husband that I would do particular not nice things, very nonfactual things interestingly enough. Stuff that if you know me you’d look at anybody suggesting them with a funny look. But apparently these friends didn’t actually know me, cause they sure seem to be believing his victim claiming nonsense. Yet they won’t believe me (other than the few who have seen him on the edge with his mental disorder) about his being mean or violent. Decidedly, could they have ever actually been my friends? It still hurts to feel this isolated when I was a victim of domestic violence, yet no one is willing to see him as an aggressor. To the point where they’d rather blame the victim as a liar.

I feel like I’m a stalled car in the center lane of a highway, trying to figure out which fork I take next, to actually get to any destination at this point.

I now definitively can say I don’t know what I’m doing anymore. I know what I was doing, with him in my life, was worse for me, but at least I had a map to follow then. Now I’m struggling to understand what I actually lost when my back was turned so that I never actually saw it. Like the Silence in DOCTOR WHO, I always forgot unless I was looking right at it.

The biggest factors:

Being infertile- I always planned to be a Mom. I want to adopt so badly, always have. But I want to see what carrying a life feels like. Having lost so much in my life, having had so much of my self die inside me, it’s become extremely important to me to feel my body make life not take anymore of mine away.

Being a Burden

Not getting school done— I legitimately only have two excuses for not getting my work done. My frequently difficult health issues and my husband’s inability to do anything “adult life related” to take care of himself. When I had to help with his homework, his class scheduling, his doctor’s appointments, his, his, his…. etc. When in the world was I supposed to have time to work on my own work? Especially when the only times I wasn’t busy taking care of his real world stuff was because I was laid up in bed not in any condition to do anything but request help for even the smallest things (ex. picking up my water glass beside me so I can drink, it would get that bad).

Becoming socially isolated— Yeah, I know. That’s something I said I wouldn’t let happen again. That’s how my abusive ex got me under his control, why would I ever let myself be vulnerable like that again? Because when it comes down to it, I have to trust to love; and I really wanted the chance to love this man. So when he didn’t like me going out without him, because “what if something happened they can’t take care of you right,” I willingly conceded to his judgement. But in the back of my head I didn’t realize at the time, I was only doing this to prevent any “punishment” I would “deserve” otherwise. I was perpetuating the Abuse cycle myself. I didn’t stand up for what I wanted out of fear of the consequences. When did I become someone who was afraid of the consequences? What level of emotional, mental, or physical pain did it take for me to finally fold? Because I sure don’t remember the exact incident.

Feeling worthless— I still can’t shake that feeling of worthlessness that has been creeping up my spine all of these years. It doesn’t help that he would remind me regularly in much more clever wording; that I am indeed worthless and dependent on him. Even though he couldn’t even pick up his medications on his own!? When he was feeling worthless he did everything he could think of (not usually consciously) to tear me down until I felt the same way, brothers in arms I suppose? Well I didn’t want to be held in drowning arms any longer.

Still being abused— On some level I knew I married an abusive guy. Under no fault of his own is he like this though. Before you judge him, you have to understand, it’s like Dr. Jekyll and Mr. Hyde. He didn’t mean to ever be cruel and rarely remembered much of the cruelty afterward. Such are the symptoms with his disease. But to find out he is doing “so much better” medically and the way he was treating me wasn’t doing better… started to be a wake up call for me. This cycle was too unhealthy to live in forever. If he was unwilling to make a solid daily effort toward bettering his mental health for his own benefit and mine I couldn’t stick around and wait to see if I’d get suicidal in turns along with him. But maybe that’s what he wanted? He has certainly implied that before. Would that have “justified it all” for him? Probably not, it would have just given him another way to self-hate. Which is the last thing I wanted since I really was looking for the confident nonvolatile man that I was friends with 8 years ago. I knew after the disease was triggered he would never be the same. Not being nice to me so that my days consist of walking on eggshells and not being safe wasn’t part of the bargain for me.

Being Poly— He wanted all the bells and whistles like you see with a new toy in a commercial. But he didn’t want to deal with actually having to assemble a new toy first. He didn’t seem to understand that there’s a lot more trust and work that goes into a multi-partner relationship than most mono relationships (not because they don’t also need it granted). He loved the lip-speak all about being poly and swinging, he didn’t love the reality. That would be why I resent this fact coming out so late in the game. He wanted to be poly or so he always told me. Until I got to be poly too, then what he wanted did a pretty big reversal. When it came down to it monogamy was so ingrained into husband’s head he didn’t know how to be or think any other way. Before I asked to be allowed to get rid of any OPP rules it was just an acknowledgeable permission to cheat on his part. He enjoyed these liberties immensely. But when I wanted to be allowed to play without him like he could without me the ingrained belief that it’s still cheating reared it’s ugly head. He didn’t know how to think outside the guilt-driven patterns of his belief in monogamy and took it out on me. That’s ok, there’s nothing wrong with being mono, but I wish he’d figured it out a little earlier along in the relationship. I wouldn’t have poured all of me into him then. I wouldn’t have given him every weakness I have as a weapon. I wouldn’t have done a lot of things actually, there are even more things though, I would have done.

That’s what really kills me. Realizing that I stepped back into the abuse cycle when I started dating him, even though I’d been climbing the ladder out of the “abused women’s well” rather steadily at that point. Somehow he triggered me right back into it. To the point where I passed up opportunities that ranged from mildly entertaining to most likely life changing. I wouldn’t be who I am today without having been through what I went through with Husband. But who would I be?

Making the Equation: A + B = D

A+B=D That’s a phrase I tell myself over and over again in my house. It is part of how I am figuring out and growing in relationships and life.

We all come with baggage. What that means when it comes down to it is that it’s hard to learn new patterns in life from those we develop based on our experiences throughout life. (erroneous example: If a guy hits me every time I say the word dog, I’m gonna learn to stop saying the damn word).

That’s really what we mean by baggage.

When you have an experience over and over again; be it the way of a parent relationship imploding, a year in college that threw your life off track, an abusive relationship in college, or a health condition that got torn down by previous significant others… baggage is referring to the patterns that these interactions built into us.

Due to time after time of the same behaviors. A+B always equals C right? That’s what you learn. Every time your Mom comes home she asks how your days was and makes you cookies, it’s a wonderful experience, let’s say? Then if you came home one day and she wasn’t there no note, nothing, would you be worried? It’s like that! You always know what the equation is in each situation you’ve experienced before. When you are in a negative situation while developing these patterns then you’re going to look at the equation and reach the conclusion; a given of something negative.

It seems to me that most of us develop defense mechanisms to deal with these negative equations. Usually the defense mechanisms aren’t positive attributes for communication, for various reasons. Not just communication, but developing relationships, romantic or not. When you leave the negative situations behind it’s hard to learn to adapt to a different equation.

In our situation, my husband and I both had various behaviors that shutdown a conversation when we weren’t willing or ready to deal with the topic. Perhaps I shouldn’t say had, we still have these defense mechanisms, but when we were able to see that these things were happening we were able to start working on it. We use a variety of techniques from key words to phrases, to rules about situations before they happen. We had to teach ourselves with each situation that A+B doesn’t have to = C the equation can have other out comes (it isn’t always negative) A+B can = D. But this isn’t something that just knowing means it’s solved. Humans are never that simple.

When A+B started to equal D more often I believed that the equation could change. Then my Husband flipped out on me. He went very manic and crossed lines I swore I wouldn’t allow to happen to me… He ingrained back on to my brain the equation A+B= C (at least with him it always will now) and I’m working all over again for the belief that this equation isn’t always a true statement. I don’t want to run off any other man I love because I don’t believe it’s possible For the answer to be D.

Always Almost There

I feel like I live my life in a perpetual state of almost there.

I am always almost there.

Or that’s what everyone tells me. When I catch them up on my life. Tell them about the turtle pace I’m living. The one accomplishment that’s new since last time we talked, if I’m lucky to have one. I have so many things that I have almost accomplished.

When you get far enough behind it kind be next to impossible to catch up. In those cases I’ve found it’s just easier to start over with a new dream. Try again. But this time I don’t seem to have way to do that.

I’m stuck in this stagnate almostness. While I watch the people around me moving forward and moving on. Doing amazing things, living! It’s so awesome to hear about, to know these people I grew up with are living their lives.

Possibility of Infertility

It’s not that I don’t have support, it’s not that everyone isn’t listening when I need it; but boy do I feel alone.

My friends and family all try to remind me that I have embryos AND eggs frozen. Most people aren’t lucky enough to have either. They are also reminding that this concept isn’t coming out of know where. I had already considered this as a possible outcome of my health issues as well as my medication side-affects. But Lupus has taken something from me, every step of my life. Step by step I go and Lupus follows behind snatching it all out from under me, since I was a child! I just didn’t want pregnancy to be another one of those things that Lupus took away from me.

Prolonging My School Hiatus

As it gets closer to August 25th my hopes for starting back to school this semester are dwindling. Even though I’m no longer on Cytoxan/chemotherapy, I still can’t seem to get my health back up to par for classes. I have no reason to go back to school if I don’t have the energy to make it through classes yet another semester. I’m not gonna lie, this is a blow to my self-worth. I know, I know, logically I have the same self-worth as before. But it just feels like one more thing that got stepped on by Lupus and I’ll just have to walk away and start new somewhere else. Currently I am maintaining my denial and am certain I will finish school… eventually. In the mean time I am still trying to hold on to the last wisps of the structure for my life I mistakenly thought would go as planned (way back Freshman year!), I have thought of a few things school-wise to turn my focus on.

I have a number of Incompletes that I need to finish for my major, bot to mention graduation. Instead of pushing myself, I will be focusing on two Incompletes for the entire semester. I don’t need to overload myself. On top of the Incompletes, I’ll be Petitioning the school to get my credits to Roll-over. The thing is… by the time I will be able to finish my degree, with the requirements for credits as well as the requirements for my health, I’ll have been “In school” for more than 10yrs!! Ouch! That was another blow to my esteem… it’s taking me more than ten years to get my Bachelor’s Degree:/ But I have certainly enjoyed the topics I’ve perused while attending classes on and off;) I certainly know what I want to do as a career, if I have the opportunity to work outside the home. With the way my Lupus is going, that isn’t looking to be likely! But I will always look for ways to try to get out there!

Step One Toward Baby World

Well the first steps involve a lot of doctors appointments and tests along with getting my cycle regulated and fertile. Since I was on birth control I have to be off it long enough for my body to start producing eggs again. This CAN take 3 months to a year or so. But I have the time limit of how long before my health deteriorates. If it gets bad enough then trying to have a child wouldn’t be a health-conscious choice at that point.

We see the High-Risk OB this week! We have been consulting with him over the phone and he has been talking with my other specialists. But husband and I get to meet him finally! We will find out what he plans for my Lupus with a pregnancy. I already have the bloodwork done, saw the dentist and eye doctor, my Oncologist’s Okay, my Rheumatologist’s excitement and curiosity. This really is it before the whole waiting for a positive test result.

Are We Really PLANNING For a Baby!?!

I’m trying to wrap my brain around what my husband and I will be doing over the next few months. The plan will lead to our lives changing for… well forever.

 

I haven’t had a chance to really process the idea that I may not actually be able to have children if I wait, like I initially planned. I mean I planned to have my college degree first, hell even a dog!! But the baby is coming first if I want that option. Unless I’m willing to risk not having it…

 

From the persecutive I have of all the options in my hand right now, the only spade I have to play right now is baby first college after. But boy is that a scary persecutive. Especially since society claims the “proper order” is very specific, of which I won’t be following remotely in this situation. I think what scares me most is knowing this is something I am ready (as you can be) for, but I don’t know if my life with this guy is ready for a baby on top of the complications of his mental disorder and incorporating it into taking care of my health and a baby.

Homemade Wedding

My wedding ceremony took place in my neighborhood. When I say neighborhood, I don’t just mean my parent’s house. I mean the entire neighborhood! It was ACTUALLY the perfect day for it; The weather was amazing, the colors were amazing, It was ridiculously fun!

 

It was weird knowing my groom said he didn’t like anyone enough to want to invite them. I had to fight him to get him to have grooms men. He “didn’t like any of them as people” But I decided to see that as part of his depression talking and chose who I understand to be his friends. They at least believe he cares. So they care about him. They deserve to be there if not just for that reason, they care. Weird snags throughout the night before and day. All of them I can chock up to his strange mood fluctuations. But it was beautiful. If this is the extant of how he fluctuates, then I can do this forever:)

Like Saying Goodbye

It feels like I’m saying goodbye to most of my friends. I don’t mean this in an over-dramatic morbid fashion. Believe me, I decided I’m not dying this time around so any of the rest of it is irrelevant.

More in the sense that I’ve been through this before. The getting sick, getting isolated. They forget. My friends never mean to, they care about me as a person! Quite a lot depending on the individual relationship, but No matter what not being in someone’s daily life you end up drifting out of their minds too… Then when I’m healthy again I have to start all over with making a new group of friends.