I am Beyond Broken

God I feel like I'm being dramatic but ask anyone who's been around me lately and apparently I'm doing really good or better than they think someone in my situation would. I feel like that's supposed to count for something but it doesn't feel like it. Honestly, it's kinda frustrating because I feel like no one gets where I truly am. I lasted longer than when I had my first breakdown but since then I just crashed and I crashed hard.... so much so that my emotions and depression are so out of control I don't feel myself

But first a PSA: PLEASE STOP ASKING ME ABOUT MY NEUROSTIMULATOR SITUATION!! Sorry for the CAPS but I just can't deal with it right now and talking about it over and over and over again. If yall have questions feel free to ask my parents, If you have me on facebook my parents are listed as family members and you can message them. If you follow my support page leave a comment or message, my dad helps run the page and he can contact you.

If yall know me yall know I can put a positive spin on anything well, just about anything. As a spoonie we come to terms that our body have failed us and at some point it comes to an epic proportion where we're like ok I get it you can stop now. But rarely does it get so bad that it's like ok the whole world gets the point now....

I met with my neurosurgeon recently and surprise! My nylon stitches were irritating my skin so yeah those suckers came out even if my body wasn't ready, thankfully it was.

I keep flashing back to random things that have been told to me this last year on this neurostimulator journey... coming in at #1 "the good thing is the most natural thing your body can do is heal"-my neurosurgeon. Of course he had no clue that I would be his 2nd patient EVER to reject the neurostimulator but that sentence haunts me. Sure you can argue that my body was still doing what was natural, rejecting something it thought that shouldn't be there, but yeah nope not flying with me right now....

And then there's the typical way people respond when anything bad happens in life. They try to keep you positive and let me tell you it drives me INSANE right now! (Yeah see told ya, it's not me in this body right now) I can't stand it! No I'm not going to let this be a forever pity party but for the love of God can people just let me feel the way I'm supposed to right now? Me not being all sunshine and rainbows right now is NORMAL in my situation. It's also HEALTHY instead of bottling up which will just make at least 3 other illnesses I have flare up. For real though, stress can do some crazy stuff to your body even when you're perfectly healthy.

I'm not saying that you can't try to cheer me up, I'm just saying stop trying to tell me how to feel or act or whatever. To cheer me up send me cute and funny videos or pictures on Facebook or something, talk to me, offer to spend some time with me. Let me decide what to do.

And with that, if I oddly answer your "how are you feeling?" Question it's because I'm tired of saying I'm hanging in there or I'm ok or some other kinda true but still total BS line. So many people use that line to start a convo, sometimes it's hard to tell who's just trying to start a convo or who's really checking in on me. And even then, we spoonies tend to shield yall from the uncomfortableness that comes with an honest answer which I am so done with right now. So if I blindly look at you and spit out some random words, just accept it. Even if I was ok with talking about how I truly feel, it's not something I want to talk about currently.

I'm so broken beyond repair you guys it's ridiculous right now. When my neurosurgeon told me I was irritated by my stitches I just busted out laughing because nothing can surprise me at this point. I'm already KO on the floor but I'm still getting hit. So I'm just laying here taking it, waiting for it to stop. The upside is I can't get any lower. (Woo i said something positive!)

I make the effort to be how I've been lately. Why? Part of it is for me and as much as I hate to admit it, part of it is for those around me. If yall see me making an effort maybe yall won't worry as much. If I make the effort, maybe I'll get back to bring myself. So if I continue doing the things I would normally do or were working on before everything happened, maybe I'll find myself standing back up in the process

Which brings me to a semi-random thought, why the hell aren't we more open and honest about the crap going on in our lives? Why do we feel like we just have to share the happy moments on social media? Why can't we be real with ourselves and others? I'm not saying let's let all the skeletons out of the closet but that outfit you hardly ever put on deserves to be worn more and who cares what people think it's an awesome outfit. We're so afraid to be accused of being a drag, negative, dramatic, or even throwing ourselves a pity party that we block the real crap we're dealing from our social media. And when people do, we look down on them which I'm sure some of yall are doing to me right now.
Why are we scrolling through pages envying other's life and not reaching out to people to help us get there? Why are we so afraid of getting help of any sort? We're human! We are social animals and social animals don't do EVERYTHING on their own. We are made to lean on each other and like everything there's a balance. There is such thing as being too independent.

Sorry that random part was written a few days ago while I was still drugged but I still stand by it. This might be the libra in me, but life is about balance and at least from my experience, it's also being honest with ourselves. But a lot of the times we end up dealing with things in an unhealthy way. We numb ourselves by having several drinks so we don't have to think about our feelings, or we bottle them up which notice it or not, does affect you, maybe not right away but it does at some point, you may not notice it but people around you will. Out mental health is just as important as our physical, we need to learn how to properly take care of our mental health and say screw it to the stigma.

I have been in and out of therapy since a year after I got sick thanks to the whole "she's a teenager so she must be stressed out" crap that you deal with being a teen with undiagnosed problems in a children hospital. I often compare my therapist as a friend with an outside view that you see at least once a week who shuts up and lets you talk about your problems and you know what? It's freaking amazing. I've been able to understand not only the way I think. process, and deal with things but others. Sure in my opinion it kinda makes things difficult, I find myself understanding where the person I'm upset with might be coming from but it always sets the light bulb off in my head. No, I don't lay down and get poked and prodded about what's going on in my life, nor am I forced to talk about things I don't want to talk about. And if you are seeing a therapist who do those things and it's not helping you, I highly recommend finding a new therapist.

Anyways, that's my health update and ramble/rant! Thanks for reading

Raw Emotions

So I'm trying to write more in my blog I have a ton of stuff to say like many of yall know but getting on my laptop is such a chore and energy zapper for me. This is something I just quickly wrote and posted to a spoonie Facebook group I'm in and because of it's length figured I'd make it a post here. It's super raw and honest but then again when am I not honest?

I hope it shows you something you need to see or hear. I hope sharing my story my struggles help you not feel alone and helps you feel stronger to keep fighting. Whether you're a spoonie or just going through tough crap in life.

I'm slipping... I can feel it.. just slowly getting stronger and stronger but the real me is fighting and fighting hard but my body is already doing enough without trying to fight mentally and physically...
 I had a neurostimulator put in in October we knew because of all my illnesses I'll be a slow healer but some of my wound hasn't closed fully with the incision for my battery being very sore. Had my follow up with my neurosurgeon after the holidays and I'm on a round of antibiotics hoping that'll help me heal because I might have an infection but he did mention that my incision looks like it could potentially be the start of a metal allergy....

I've been half letting my mind go there and half not, if it is an allergy I would have to get my stimulator taken out... i would have to give up the device that has allowed me to be more human.... I would have to give up all the progress I made and what's worse is I'll have to relive that horrible post op pain all over again without any benefits...

I'm forcing myself to do things, trying to make plans once a week with somebody but I'm afraid that's not enough. I'm scared out of my mind...
But then I see how much I have fought cuz let's be honest sometimes we don't realize how hard we've been fighting because this is our life and so we just live with it so that gives me hope. When I usually get self harm or suicidal thoughts I now am full of rage which my therapist says is a good thing because I'm allowing myself to feel and not just avoid, how I got there no clue.... I'm reaching out and trying to participate at my church more but it's tough for people my age we're a minority...
Today has just been a really tough day and those stupid American crime ads keep clawing at my PTSD malong everything worse... this isn't like me usually I only feel this down for 5 hours tops and then I move on but it's lingering... usually my depression makes me feel numb or I'm moody but I don't notice it or I just sleep, something other than how I feel right now... sure I've been home all day but the colors have become dull.
But I will fight, even though my body is so physically exhausted I'm not a quitter... yes I feel awful but I'm determined to make it through this. So maybe I'll be going through the motions.... but maybe those motions will turn into actions that'll help get me out of this, help me be happy again.

Let's Just Be Honest: June 22, 2015

So not sure if yall remember but I was taken off my depression med about a month ago and instead of immediately putting me on another one while decreasing the other I had to go fully off of them. Since then, I was put on another I'm doing a lot better but I don't feel 100% me and I hate it.
I really don't care too much about things right now. I'm just here, doing whatever to pass time. I gotta fight to do the things I normally like or would do. I have my moments of true enjoyment and stuff but I'm not happy all the time. I still stay positive but I don't feel myself smiling inside.
I'm sure my opposite sleep cycle and easily exhausted doesn't help with all of this. At least I'm not having bad thoughts or wanting to throw things but I'm not happy where I'm at right now. I'm psychologist thinks this is more situational than clinical depression, if she's right boy do I hope I get my stimulator soon!
Anyways, that's what's up with me right now. Waiting on insurance to approve my stimulator they said it takes 4-6 weeks and it's been 1 or 2? I'm going to be blogging more often, even if it's just expressing what I think. The post might be more frequent and smaller and less flashy because it's easier to add pictures and everything on my laptop and these post will be typed on my phone instead.

Black Box: A Spoonie's Review

So part of being a spoonie I believe, is watching a lot of tv/movies and a lot of people like to watch things they can kinda relate to. So when I heard ABC put out a new show about a Doctor with a mental illness I knew I had to check it out. (for those that don't know I suffer from depression/anxiety which is being controlled by medication.) Don't worry there won't be any spoilers! We all know there are countless numbers of medical shows and their accuracy varies. Some are too dramatic others focuses mainly on the medical team's life and recently, there has been more publicity about spoonies.

IMDb and different site's give a summary but it gives some spoilers so I'm just going to give my summary which will not. Catherine Black is a famous-big city neurologist. But she has a secret, she's bipolar aka manic depression. Only her psychiatrist, her brother and his family knows. She faces the daily struggle of making sure she takes her meds, and hiding a big part of who she is to those around her both professional and personal life. 

For whatever reason (most likely ratings) American commercials for tv shows have become very vague. So I wasn't able to form an opinion until I watched it and so far, so good. here are some reasons why I think it's a good show

1. I can relate. The most obvious reason is I can relate to a degree. I can relate to making sure I take my pills. I have stopped taking my meds just cuz I felt like it off and on (yes I know, shame-shame). I faced the battle of hiding my illnesses or how extreme it is from people around me and feeling like I'm hiding a part of myself. I was afraid of loosing people who means the world to me if I told them what was wrong with me. I face the fear of when I have kids that they'll suffer what I suffer from.
2. Patient advocacy. As someone who faces a lot of medical problems you learn how different people handle medical care. You'll see Doctor Black's "bedside manner" along with her peers, boss and even the relationship between each other. Now, I feel this is a little dramatic but hey, what show doesn't have something sexual or a strong competition between people? I LOVE the way Dr. Black interacts with her patients! So much that I wish she could be my neurologist. Part of the reason she's so great with her patience is the fact that she can relate. I mean how would you feel if you walked into a consult room and it was covered in drawings because a 18 year old couldn't stop? She handled it amazingly. She doesn't get upset and even compliments his work.  In each episode so far it is Dr. Black that get's through to those "crazy" patients. I imagine a lot of doctors are afraid to say something to their peers if they feel they're doing the wrong thing or gave the wrong diagnosis unless asked. But not Doctor Black she has the guts to say what she thinks. Even with procedures! She looks at what is better for a patient and doesn't act like people on Grey's Anatomy all excited to take a patient under. She only does what's best overall.
3.  It brings attention to mental health. Again, my mental illness pretty much looks like nothing compared to someone is bipolar. But it proves the very hard to explain truth that our illness(es) doesn't define a person but at the same time it greatly affects their life.It shows the battle of a person trying to live as "normal" of a life as they can. She passionately explains off and on of famous people with mental illnesses and the battle someone with her condition faces the tug of war on if they should take their meds. People with mental illness can become an artist all the sudden or much happier. With Doctor Black it helps inspire her to do research and have a stronger passion for what she does. But she also faces the challenges of if she should put a patient on medication or go through a surgery that will take care of an issue. I am not bipolar and as far as I know, I don't know anyone who does so as far as how she is when she has what we call a "flare" But it does show with her and her patient how intense a mental illness can be.
4. It's not too intense and not too light. Do you remember the show ER? I do, I was a little kid at the time so my presumption of it might be inaccurate because of it with that being said I felt it was a kind of intense show. Black Box is not. But it's also not a super goofy show like "Scrubs" it's right there in the middle where there are some intense moments followed by interesting characters to lighten the show up. 

With that being said, spoonies (myself included) are hoping that this show along with other things in the media will help break the stigmata on any chronic illness. That people will no longer be isolated if and when they all the sudden develop signs of an illness of any type. We hope spoonies will be treated more normal and not define by our illnesses. It's going to take time but the little steps that are in action will hopefully help. 

But back to specifically Black Box, it's a good show so far and looks promising. I wouldn't say it's a family show, it probably falls in the PG-13 category do to sexual content but also the subject matter. Unless a kid is raised knowing about mental illness I imagine it would be difficult for them to understand and process what is going on. Which could possibly harm our cause of awareness. Personally, I'm hooked and can't wait to see more! If you watch the show tell me what yall think! Doesn't matter if you're a spoonie or not I wanna hear from yall!

Stay Strong,

Aly