Will I still be who I am If I stop giving chances?

Will I still be who I am and want to be if I stop giving people chances? There are so many pros and cons to both sides. Not getting hurt, not experiencing something amazing, not being taken advantage of, not learning something, learning something painfully. The list goes on. But the biggest con for me; will I have lost my love for the faults in humanity and every individual’s ability to rise above it?

But would I still be the me who I believe in when I look in the mirror? The person who believes that others can change if anyone bothered to let them… and if cigarettes are any indication or break ups for that matter, it can take quite a few times before quitting- a pattern, a behavior- finally sticks. I certainly know it takes a lot of times messing up, depressingly often, for years, before there is any noticeable changes in myself. Even when they are something that I work on everyday.

I talk too much, I come off too strongly to people. This can be very off putting. With the abuse I’ve been through I have been told how awful these traits are to the point where I realized I haven’t believed I’m worth being friends with for quite a long time. The worst part is, it isn’t like anyone else I know doesn’t just reconfirm they don’t like these essential parts of me being who I am. I just wish one person not my parents would tell me that those parts of me are good.

Do I change these things to fit other people? To not deal with the heartache of being so lonely? If I do that, will my heart ache for who I am stifling, my true me? Maybe they are all just right, maybe I am the problem… I am too much. Is that a bad thing though?

If so… how do I change this part of me that is so strongly ingrained in to who I am? If I don’t change then do I put up with the heartache, attacks, bullying of all the people who claim to care? Before of course disappearing from my daily life, but not before they put in their two cents, with the rare occasion I do see them and the bullying starts again? They have already been walking away claiming to be the victims- as I have been lashing out at them for being dragged into my now old group’s nasty drama then having their self absorbed drama/hormone induced narcissism (I know, mildly hyperbolic, but really mildly sadly) jumping on me and blaming me for it.

I want nothing of those people. I want to start new. I want to start listening to my gut and not letting my mind, circumstance, and other people I trust too talk me out of those truths I know

Every time I don’t listen to my instincts I get royally screwed over. Almost always with that person escaping as the victim cause they are “pretty little liars,” but being as blunt as I am… I must be the bad guy right? I won’t play their gaslighting games anymore. I’ve seen therapists long enough for them to tell me I haven’t an ounce of narcissism in me, that they are projecting, that I am being gaslighted. But I still keep making new friends who do the same to me over again. When will it end? How do I actually walk away from these toxic people when they are as ingrained in to the small town life that I live as they are?

An example of why I can’t walk away from a big part of our old group of friends is that in order for my husband to get promoted at work I have to play nice to- nasty narcissists who are manipulative and abusive in order to get what they want. Who somehow, until recently, would gaslight me into believing it was me. I swore I was cutting these people out of my life. But I can’t not if I want my husband to get a salaried job and not just be on minimum wage. Thank goodness for Obamacare or I’d be screwed with no healthcare until he gets moved up. But if I don’t play small town politics with these crooks like they are friends then any chance for advancement is going to be a nasty fight.

Thank goodness the top bosses aren’t in that drama nonsense. Because if it goes wrong, which I’m hoping it’s my anxiety thinking there’s no chance it won’t, these bosses should be able to recognize that this person who is above my BFG and training him has a personal issue with me and is taking it out on BFG. I have an issue with my husband NOT having an issue with the things this guy has done to me and to BFG and other friends at this point– all for this guy’s own gain. But that is so very separate an issue from that of playing politics of a corporate wife, even on the barely above minimum wage level. Because this being a small town, me deciding not to keep toxic people in my life limits who I see drastically. Other than for networking for BFG’s work. Which being as small a town as it is means seeing almost ALL of them, so trying to cut out the toxic people is practically lip service to myself… at least I haven’t run into my ex-husband in all this. That would be the toping on the cake.

I’m done giving these people chances, but I have to keep playing like they matter to me, I have to keep giving them chances, as the more I see them or interact with any of them– the worse my now continuously self-perpetuating abuse cycle in my head grows, just by hearing the things they have to say to me, seeing their faces, knowing to my BFG what they did just doesn’t matter to him even if it matters to me. Other than that it may cause problems for him with work and said people. But my husband needs the promotions for our family. Am I being selfish to ask that these people not be in my thus our lives?

My psyche and ability to move past my PTSD sooner rather than later or never versus my husband actually having a job that supports us as a family? Do I ever have a choice that’s a good one or will it always be to sacrifice one piece of myself or another? So do I screw up our family’s future possibly by taking away chances from the people who have already burned me or do I keep being me, letting them in… knowing in the end I will walk away far more damaged than I was before? I ask this as if it is really a question, but perhaps it is all rhetorical, perhaps I really have no choice, after all I am only being me

… right?


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!!

Why Are We Doing Nothing But Chemically Medicate?

Sometimes your mind goes in too many different directions and sometimes it is at a stand still and can’t seem to go in any direction at all. That’s anxiety and depression. In today’s age we have so many arguments about those diagnoses. Are they being over diagnosed? Are they not a disease, but an excuse? Are they caused by society or brain chemicals or maybe a bad background? So much debate.

But the biggest thing I hear is everyone has it. Maybe. Maybe we all feel that crippling feeling of not being able to move… for a moment. Maybe. Maybe we all feel that feeling that every single direction has to be the right one and oh no what do I do? Maybe. Maybe we all feel that numbness of nothingness that feels like something beyond what anyone who hasn’t felt it could fathom feels empty. But I think there is a difference. Just like in all experiences. We can say in almost every situation; “you can’t know.” Where doesn’t that phrase work? … You haven’t lost a tooth! … oh, wait are you talking to a 3yr old? See what I’m saying? I think anxiety and depression are two of those things, like all other experiences, that some but not all people can say they have experience with.

I think I recently would have liked to claim (to myself at least) that my anxiety came from being in abusive relationships. But, honestly,  I remember being anxious before that. The difference was, I had a support system that helped me feel safe. I rarely felt anxious within the bubble that my life was. It wasn’t until dealing with abuse that I learned how truly crippling having anxiety can be, how essential family (people you love, who love you) is to dealing with any form of illness physical or mental, how that bubble wasn’t set up the way we have set up our world. I’ve heard words that imply “our world isn’t for the weak.” But I would like to counter that and say that– perhaps we have set up a world that isn’t for the people who care to feel for others.

But I have certainly never claimed to be clinically depressed, situationally for sure. It is hard to be stuck in bed for weeks or not able to be at school with your friends growing up and not feel depressed during those times. It wasn’t until recently that I would say I, perhaps feel, what a minute part of feeling depressed clinically can be like. I lost my baby. But it is so much more than that. I lost what and who I thought I was going to be, what I thought I was going to do. Just like when I speak to people who have been diagnosed with one of the diseases I have, who I was going to be died with my baby. So now who am I heading toward in life? All of those patterns and goals I mentally prepared for, for months. The fertility treatments, the bed rest, the budgeting, the picking names, reading as much as possible, and getting excited.

I have come to realize it may be inappropriate for me to minimize my situational depression just because it isn’t the same thing as clinical depression. That’s the thing, it isn’t the same thing. Instead of comparing, then feeling guilty, because “compared to [them] I don’t have an excuse” I need to realize that I have something else (though similar) going on and I have to figure out what that means if I want to have the will power and knowledge to change the negative feelings and patterns this situation I’m in have caused.

I have found I have what sounds like a weird form of being suicidal. Though I don’t know how it is weird when there are books like Into The Wild. I don’t want to die. I want this life I have to die. I see no point in this life continuing. It makes more sense to walk away from this life and start another one all over again? Wouldn’t it be easier?

In the end it wouldn’t. “Becoming someone else” or “who you truly are” or however you want to put it is difficult in our society. It’s next to impossible. You can’t even change your middle name in some states in the U.S. If you walk away from people- you will be found by technology, the government, just google yourself- it doesn’t really matter what you’re running from, you won’t get away. If you don’t leave; the other people in your life will continue to see you as they have since forming your relationship. No matter what changes have happened in your life and how that has shaped who you are since meeting.

So the option I am left with is the same option I have had every time I reach this point in my life. Curl into the fetal position with a panting squirming cocka-poo who is trying to breathe for a few hours/days/ weeks/months.

Where I lie– Not thinking, thinking, over thinking, feeling numb, over feeling, feeling numb because I felt too much– cycling at a level that gets to the point where “I don’t even know” and “I’m as confused as you are” are the only answers I can come up with when asked questions pertaining to what I’m doing or what I’m thinking about.

Then figure out what my life will be now that this branch of experiences has been sawed off. I find a way to give myself make-work, that is useless work, that doesn’t make me feel any more worth something, but it’s doing something. Then I move to that something sparking an interesting, lighting me up…. and I GO!

I run with this wonderful new discovery of self. This awesome ability do whatever skill I have discovered, be it learning to knit socks, train dogs, or finally learning how to not interrupt when someone else is telling a story (I haven’t gotten that one yet). With this discovery the ball often never feels like it will stop rolling. I tend to stay in that state. Happy. Ready for anything. That’s what I always assuming anyway. Until something like this happens to my life and I am left asking anyone and everyone if they have any idea what coping strategies I’m supposed to be using to move forward in life and being left with nothing but the wall of caring, loving, sympathy and absolute cluelessness about it… the same situation I’m already in.

The problem with my THIS is that it doesn’t have only one layer to my situation. When you think the story is finished there always seems to be another but… and in this labyrinth of just one more hurdle at every turn I am getting tired.

If what is said is true about anxiety and depression. That we all feel it, at THAT LEVEL, can it be an excuse by each individual or is it truly a societal symptom? Maybe we do need to take a look at society and the direction mass mentality is going.

Personally I feel an individual should never have to ask for help it should just be given, but that isn’t how our society is set up, right?

Our society is losing itself to depression and anxiety, we aren’t do anything. Treating it as its own disease rather than the symptom it appears to be. We are all crying silently for help.

Because when it comes down to it… Why are we doing nothing but chemically medicate?

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.

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!

Infusion #3- This Isn’t Fun Anymore

This isn’t fun anymore. Not that it was actually fun to begin with. But I have hit a point past my physical pain tolerance. Which is pretty hard to do when I’ve set my mind to it.

That sensation that alcohol causes burning into a cut to clean it? I like how that feels. The feeling that I have all over my body right now is burning and itching. It is so beyond my pain level I wish I could pass out so I don’t have to feel the pain anymore.

I had my third Infusion of Cytoxan on Monday. It seems to be an average thing for my functioning to start to come back around Thursday-Friday after the Infusion.

I keep wondering if this is really helping anything. My quality of life only seems to have gone down. What has it gone down for? Muy numbers on my blood work? But were those numbers really affecting my lifestyle on a level that the treatment itself is?

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.

Don’t Let Them Convince You

I have to say this; for a friend, a fellow spoon, who is dealing with her Rheumtologist telling her she doesn’t have Lupus due to not having an ANA positive blood test results. Which is Lupus 101 people! Many people only test + sometimes, Some people test + all the time (like myself), and others  never test ANA positive at any point in the course of their disease. She has also dealt consistently with unsupportive or negligently supportive family members, due to their lack of understanding or lack of belief in her having the disease.

I know there are many others out there dealing with doctors and family members being unbelieving. I was lucky I always have my parents on my side even if it takes a while for me to find a way to explain an issue so that my parents understand it. It’s not like they can back something up they don’t know!

So to my fellow Spoonies and dear friend, ;)

Don’t let them convince you that you are wrong about what you are feeling happening to your body. If you know something is wrong or right and the doctor says otherwise, for now, work on home remedies to help with the symptoms, but do research of your own and search for new doctors. Get diagnoses slowly. Push and don’t stop pushing. Don’t let people around you discourage you! Go for the littler diagnoses first, then get the specialists to realize the connection and make the large combined diagnosis. For example Thrombocytopinia, Arthritis, Fibromyalgia, Raynaud’s Syndrome. All it takes is one specialist finally making the connection between symptoms to finally move forward with a proper diagnosis.

No matter what, I am the only person who can feel what is going on inside my body. Part of the problem I dealt with growing up was being told what is going on with my body by doctors and what needed to be done to fix it all of the time. Really, I was lucky if a doctor bothered to explain what was wrong in any abridged fashion. Some doctors still treat me like this as an adult. They forget that they are only my medical advisors, they don’t make my medical choices for me. Doctors have the training; but they can’t actually know what is happening to my body past the signs that they see in the blood work and looking at my body and the symptoms that I explain in what words I choose to describe them in.

Not having positive ANA in your blood-work, as well as not having the average numbers on any other blood-work the doctor decides is necessary, will mean the doctor makes an assumption that isn’t necessarily correct. Let me ask you, how do we explain people with auto-immune diseases who never test positive? We can’t explain that by doctors’ “rules.” We can only explain it if it is understood that not enough is medically known about our disease yet, so  a lot of what patients are forced to rely on, as a 24/7 hotline doctor, themselves alone.

I was raised with this disease. I was taught to notice, feel, and decipher all of the sensations that are occurring in my system. Where it became difficult (for all of us) was trying to find words that just don’t seem to exist in the English language to describe what I am feeling to someone who has never felt the same sensations. It was always exciting when I was able to latch on to some weird mangled phrase or analogy that finally clicked in other people’s heads. When that happened, my parents would help me figure out a way to speak doctor-ese so that the doctor, who is listening for key words and will often dismiss anything else (depending on the doc), will understand the symptom I am explaining and be able to properly treat me. It’s a process (I’ll tell you what!!)!

Certainly the concept of scales/ratio that we autoimmune patients are always being asked to describe (“On a scale of 1 to 10, how much does it hurt?) is so skewed that any common understanding we might have had stops right there–and frequently goes backward to the point where what I am actually experiencing can become minimized. The other person walks away with an incorrect view of my situation which is also demeaning to myself and my disease. When this happens, a person like that, rarely has the ability to grasp the difference even if I try to teach it to them.

So, fellow spoonies and dear friend, Don’t let them convince you that you are wrong about what you are feeling happening to your body.

Is This Nervousness?

For what seems like ages now I can’t seem to focus on any one thing. I have noticed that it’s getting a lot worse every day that we get closer to actually starting chemo. It’s almost like until they actually do the first IV infusion, I might get a phone call from the doc saying, “Oh! After the recent blood and scans we like your numbers” or “We decided this med will be a better option for your situation and, of course, less intense on your system.”

But the closer we get to the day (two more), I realize I am doing this. I AM doing this. I don’t know what “this” is, it may be nothing to me or I may be miserable, like when I was on Methotrexate shots. I DON’T KNOW!!!  That’s the biggest problem really. I have a huge issue with dealing with unknowns. I’m a curiosity-kills-the-cat kinda gal. I need to know.

Half knowledge about something–especially my health, my own body–half knowledge is almost physically painful for me!

My therapist says it is totally normal for me to not really process what I am going through until I’ve had a few infusions and am actually coping with side-effects consistently.

Giving me this much time before it starts is evil, but also great. I really needed this window to get the chance to prepare for anything that might happen during my more intense course of treatments; however, getting this time is also giving me the chance to get my imagination going. Think creepy Twilight Zone theme music. I am, of course, giving myself the chance to think of the weirdest negative things ever. I don’t think it’s the typical fear stuff, at least not yet. I am probably blocking those fears still because they are too big. Instead I am choosing these ridiculous fears like the end of my social life and the failure to finish the hours of classes in the timeline I have built for myself. :/

These made-up possibilities that keep popping into my head throughout the day pass the time for me. The stories are sometimes positive and make me smile, but more often than not the ideas make me cry too (hormone shifts from the fertility procedures? or the fear that the reality makes dreams impossible?).

It’s the little bit of denial I’d like to think of as hope that I am hanging onto. Hanging on as the reality gets closer and closer by the day. Maybe I can just walk away and forget the appointment! So many fantasies I can create in my head. In the end, the reality is, that which I park my car in front of and unlock the front door to walk into.

Hormone Comedown

It’s like I was all hopped up on hormones and now I’m coming down:/ I am crying all of the time! It’s ridiculous. It’s isn’t even like I’m crying things that deserve a tear or two!

Oh look my cat just wrapped around my other cat to sleep!

**Excuse me I have to blow my nose**

Wow, it’s like PMS times 10… I can’t wait for the hormones to fade so I can stop this ridiculous “emotional lability.”