My Body's Betrayal

    Ok the title of this post kinda made me laugh because my body has been betraying me since I was 12 but I couldn't think of anything else..

For those of you who don't know, my neurostimulator- the device that has helped control my chronic pain IMMENSELY, is being rejected by my body. Which means I have to have it taken out. The upside is, after we let my body recover I will be put on anti-rejection meds and we'll get it implanted again and hopefully, all would be good.

But despite all that, this has been a huge blow to us all. I mean, it's pretty obvious that this has affected my parents and me but it has also been a huge blow to everyone who has supported us throughout the years. Which for some reason, is kinda surprising, even my closest friends broke down when I told them the news.

I think deep down inside I somehow knew something serious was going on but everyone else around me wasn't as concerned so I just went with them. But then my pain got worse and what was once 2 open wounds became 1 and that really caught my attention.

I know some of yall might be thinking why did it take so long to come to this, well first, it was the holidays, scheduling doctors appointments around the holidays is really difficult for some reason, all doctors are just booked up. And then, it was because we were giving antibiotics a chance to work to rule out an infection. Oh, and because of all my illnesses we knew I would heal much more slowly so since there weren't any other signs at the time we just thought I was healing much slower than we all originally believed.

So how am I feeling? Oh gosh where do I begin? I hear "I can't believe this is happening," "I can't imagine how you must feel," "I'm so sorry" so much and it's true. I mean, my parents and I don't even know how to feel or what I feel. It's just a continuous flood of emotions with moments of numbness. My depression has obviously gotten a lot worse, in all honesty since seeing my doctor I've been mainly sleeping. When I'm awake I'm trying not to cry. It's a mixture of emotional and physical pain. 

I'm angry, I think this is unfair but I want something to be angry at. I don't blame God and yeah sure this is life but I want something to specific to be angry at but all I can think of is my body and that sounds pretty stupid. 

I wish I could workout because before I fell ill when I had all these emotions stuck inside I would just workout really hard and it'll help release everything. But I can't do that unless I wanna be in the ER or hospital... 

Oh and to top all of this off I'm battling a cough/cold haha yeah I just can't win right now... 

There's been a lot of questioning right now... Am I doomed to just suffer the rest of my life, should I just do what I did before and do my best to ignore all my symptoms and try to live the life I want? And what the heck is God trying to do in my life right now? 

I'm frustrated because I don't know the answers to the questions I have right now. I mean, I know I shouldn't just try to push through because after doing that for a little over a year I became home bound/bed ridden for so far, 2 years and counting.

I'm confused because I see other people with disabilities and illnesses defying the odds and yet I can barely last a day without a nap. It makes me feel worthless but then I see the amazing and crazy amount of support I'm getting and that silence those doubts. Which btw, what took yall so long?!?! I knew I had support but for the most part, it was very silent most the time. 

I don't understand, for the most part I believe I'm a good person and it upsets me that I and other good people in the world are dealt a pretty shitty deck of cards. Despite never giving up, busting our ass and staying positive we hardly get anywhere. I know it sounds childish but it's just not fair... 

I was, finally able to try and make my life the way I wanted it to be. I had plans I was putting into action, I started physical therapy, was reaching out to people to hang out with and get out of the house, etc. But then it came to a screeching hault and now I'm stuck trying to figure out what to do again.

I've been going crazy being stuck at home! 2 years of hardly getting out the house really gets to a person who loves being around people.

So anyways this is where I'm at right now, I was hoping 2016 would be my year and who knows, maybe it still will be and Januaray just isn't my month. I just want to thank everyone for their love and support. The best thing yall can do right is just show me you're there. If you're friends with me on facebook shower me with cute and funny videos or memes or start a convo with me and try to distrat me from the hell I'm dealing with. If I need anything else I'll let yall know.

Aly

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.

Moments Stolen: My Best Friend's Wedding

Photo Credit: Mrs. Welches Warriors

So this obviously isn't going to be the typical "voice" you hear in most of my post but I think it's a post that needs to be made.
It's really hard to keep friends when you're sick all the time. You go MIA randomly and people just get use to you being in and out of the hospital.
But every once in awhile someone special comes along.
I met Elizabeth at a diocese church camp when I was a freshman but it wasn't until sophomore year that we started to get close.
We would talk off and on between camp, she was one of those people who truly listened to what I said. She understood that me cancelling things wasn't me being flaky or trading in our plans for something better but that I really couldn't do anything. She was always so understanding.

And then there's my 20th birthday. We haven't talked in month but I knew she liked to country dance like me and I invited her to go out with me and another friend for my birthday. At first she couldn't go but then my friend bailed on me last minute and Elizabeth dropped her plans so she could take me out for my birthday. She made my birthday that year. It was the first time since I turned 18 that my brother and his fiance wasn't here to celebrate with me so that meant a lot to me.

So I did everything I could save my spoons for her wedding day. Unfortunately, I woke up that day feeling pretty crappy. I was heartbroken but I wasn't going to tell her I wasn't coming. It was her day and I wanted it to be perfect for her so I waited.

Two days later I sent her a text explaining everything and being the sweetheart that she is she asked how I was feeling and said it was no problem. All of this made me even more upset to miss it. I know she doesn't feel this way but I felt like I had let her down. She's been there for me but I was unable to be there for her big day.

As a spoonie, we miss a lot of  moments. Sometimes it's not that obvious as a wedding, it can be a simple lunch date with a friend, and it always hurts more when the persons /people we made plans with get upset with us thinking it was out of our own free will when it's not. We would do anything to feel normal. For some of us we don't leave our house that often so getting out the house and it not be a doctor appointment or ER visit gets us more excited as you think.

We take every precaution we can take so we can hopefully go but, we are at the beck and call of our bodies, There are and will be times that no matter what we try to do our bodies are telling us no don't go and we have to listen. Why? Because if we ignore our bodies we can pay for it big time. Honestly, we already do even if we're having a good day but when we're not and we go out anyways this can result to a long recovery (a week rather than a day or two) and even a hospital visit.

All we want is for you to understand all we also want yall to let us decide if we should or shouldn't go to something because it also hurts when people decide not to invite us when they know we're not feeling well. We know our bodies best. We know what we are capable and incapable of doing. We may be spoonies but we're still human beings. We long for social interaction and fun.

Please Don't Touch Me

Trigger warning: this post will be talking about the mental and emotional aftermath of sexual assault. No details of the events will be given but talk about reaction to being touched will be.

Over the summer my PTSD has gotten worse/flared up thanks to the media using my situation as an entertainment factor. I can go on and on about the outrage I have about this but we'll save that for later. This has been something that has been weighing on my shoulders recently and I wanted to share this because I think it will help a lot of people in my shoes but also help the loved ones of people in my shoes better understand the changes in the one they love.

I'm an affectionate person, my whole family is, plus I live in the south so most likely, you're gonna be greeted with a hug by people me included. I'm fine with hugging, I can control how close someone gets to me, if I'm not ok with a bear hug I can prevent the amount of body contact I have with someone by leaning forward more. Also, having been involved at my church we only do side hugs with kids and youth, steps we have took with the whole church scandal.

I LOVE to cuddle ask anyone I have dated, let me cuddle and I'm happy. You can play your video games (although I usually am playing too) or whatever just let me cuddle up to you. I use to cuddle up to whoever would let me out of the people i know whether it's just leaning on or heads resting on each other again, do that and I'm happy.

But the one thing that was robbed of me after everything is my comfortablity with cuddling and it hurts because some of the people I really want to cuddle with and SHOULD feel comfortable cuddling with I don't anymore. The biggest one being my dad. I'm really close to my dad, he's my rock. Ever since I was little our thing was to lay down and watching tv together on his days off. I would lay my head on his shoulder or stomach off and on but now, there's no contact. And I hate it. I've been in a really cuddly mood lately but been too uncomfortable to cuddle up to either parent. Sometimes them just putting their arm around me or hugging me a second too long gets me super uncomfortable they just don't know it.

It KILLS me.

Really the only time I've been ok with them holding me is when I'm having a huge mental break down. The other night I was I'm really bad pain and my mom offered to hold but even then I was too uncomfortable with that. Hell! There are times when I've needed help from my mom because I passed out or whatever but I don't even want her to see me naked!

I haven't talked to them about it, it's too hard and I think it's something that it's really really hard to understand. Either way, their feelings would get hurt and I don't want that.

It just really really sucks, the 2 people I should feel completely comfortable with I don't. I try, oh trust me I try. Like when they hug too long or their appropriate touch makes me feel weird I push through it but no progress. I have no clue how to fix this and when I was in assault specific counseling I guess I was denying this was a problem so I wasn't able to ask for help.

and then there's the doctors or random bump in with a stranger oh man...... the stranger thing I'm totally ok with, briskly touch a random body part jumping, oh well it happens. But sometimes with my doctors I have to mentally prepare myself for them touching me. I already do this if I know they're gonna touch my stomach but now I have to prepare even more.

It's weird because since I'm such an affectionate person I want to be touched but I guess you can call me "picky" on who it's from. I don't want to be like this especially towards my parents. Again it sucks. But that's just the evil of PTSD I have to deal with and some of the stuff I've learned I'm in no control of. Is this one of them? So far I think yes but maybe someone out there knows and can help me get past this I don't know. But I just wanted the world to know you're not alone, that your loved one isn't purposely pulling away from you it's just cause and affect. And really the only thing I can think of that you can do is ask them if it's ok to touch them, hug them or hold them and try not to get too emotional if the answer is no.
will it get better? I don't know, I hope so, maybe this one takes a lot of time or at least for me it does.

As you might remember I'm trying to blog more and in doing so, I'm trying to post my really long Facebook post here. I'm pretty sure this is my first time actually doing this so let me know what yall think!

Also, I'm on my phone so sorry if the format is a little weird/different than what I normally use.

People always say I'm really strong or how they're amazed I haven't lost my faith despite having to loose and give up so many things in my life; going to a "normal" school, being an AP student, my sports, my music, driving, working and even just going to church. And my answer has always been how could I not?

And with yet another trend of people getting engaged, married, graduating, expecting or just having a baby its been a little bit tougher, but what's been really hard? Seeing people travel the world.

With my depression I'm use to not feeling the greatest but i knew it wasn't me, it was my depression but this? I can't help and think that this is truly me feeling bitter about something I currently can't do and not sure if I'll be able to do. And honestly, I'm not use to this. It's really, really, really easy for me to stay positive. Probably a little too easy in some people's opinion but it's just how I am.

It drives me crazy I feel this way! Nothing good comes out of this. I'm not like some people who gets a kick out of being this way because they get attention or their fill of drama. And to me, it's stupid to feel negative towards someone when they haven't done a single thing to you!

The point of this post? There isn't one really. Just me being honest with you and myself about how I'm feeling. I know a lot of my spoonie friends can relate to me and maybe other people can too and maybe this is my way of dealing with it. Maybe me fessing up will help me not be this way who knows, only time can tell.

I hope everyone has a great week with plenty of spoons!
Aly

Letting the Tears Fall

So if you haven't heard, my neurostimulator got denied by my insurance, we're in the process of resubmitting more info and trying again because sometimes that's what you gotta do with insurance.

Since after finding out and becoming a basket case for the rest of that day I've kinda numb myself to it all. And being unable to do what most folks do when things go to crap (going out and having fun, drinking, clubbing, workout real hard) I'm stuck. So, it's been avoiding thinking about the whole situations and my feelings

Which went well until 2-3 am Friday. I've been trying to figure out how to cope because I knew it would be only so long until I got to where I am today.

Yeah, I broke down crying.

When I originally wrote this post hours later I wasn't paying for my tears yet but I was waiting for it. I could have been a lot worse so I'm kinda proud of myself. Right when I was about to loose it I texted my dad telling him I was about to so sleepy- I- have - a - long - weekend - dad came to the rescue. It took a moment he was droggy, I was emotional so guess you can say we kinda growled and barked at each other for a sec. But then, we both calmed down and realized we were taking out the situation on each other which isn't what we needed to do. So I tried my best to not sound like a kid having a temper tantrum and he gathered himself so he wouldn't sound like I'm the problem.

After we got over the obvious exchange of words and stuff, our convo finally went into the kinds people who are close usually have in the early hours of the morning. It still fell under the obvious things to say about our whole insurance crap but instead of getting me more emotional or feeding the fire of anger we had inside us it became theraputic for me, maybe for him too. We discussed how this person who reviewed my request didn't know the whole story and how they're pretty much being some person behind a desk making decisions for people they don't know and only knowing a small part of their story. We talked about how that made us feel and how we have so many points that will be made with our next submission.

But I was still crying, I just couldn't help it, it needed to come out. I know the cost of my tears, I know I'm going to pay for it but again, it could have been a lot worse. I could have been so bad you couldn't understand a word I was saying. So bad that no matter how much I blew my nose it would still be stuffy, but I didn't. I'm grieving and while yes, this is a delay not a lost, I blindly believed I would get insurance approval right away. I did loose for right now, I was told no, sure it could would be a no not yet thing but still, it's a set back and sometimes we just gotta let it out.

I know I might sound all over the place right now and I've said crying gets me nowhere which is very true. But there are situations where crying is neccessary just like dancing. As a spoonie, we learn to save those times for when we really need to because doing those things can be like someone who doesn't run, doing a 5K one weekend with no training.

I feel better, I don't feel like I'm drowning or completly lost, my head feels a little more clearer. Right now, yeah I'm starting to feel a little tired from it all but that's what I needed at the time.

My dad said he needs my help writing his letter and thinking of things to say which is no question, I'm going to help but FINALLY just a little bit of determination came to me just now. I already knew points to make and told my dad some of them while we we're talking because some of the things were bothering me. I kinda felt like when you are told to write something though, there are ones you just know the facts or whatever and blindly write what needs to be said or what people want to hear, but then there are things that you are passionate about and sometimes even when it is something we love we loose the passion for a moment. Maybe because we have to follow a routine or it's not the way we want to do it but we loose it sometimes and it's not always easy to get it back, sometimes you just have to let that passion come and find you. 

And that was where depression rears it's ugly head, it clouds you, it makes everything seem dull. yeah I didn't know what to do when I got denied, should I have said I'm gonna find a way? Probably, that's definetly an "Aly" thing but the moment my dad said we were fighting this I was in. It wasn't a "hell yeah I'm in!" but an "I'm in" and to me it didn't matter how I was about it, the fact that I said yes was the first step for me. 

I know this might be scary for some of yall to read because you know the true Aly and I apologize for that but I have to be honest with myself and with the world. I have to show how a multitude of illnesses can affect someone. I have to show how mental illnesses are, how they can make someone act ways that are far from who they are, Because if I don't I'm conitinuing the stigma, I'm allowing invisible illnessesn both phyiscal and mental be just that, invisible and I refuse to let that happen, Tear me down all you want and accuse me of begging for attention I really don't care because I'm tired of seeing the spoonie community walked all over. 

Anyways, I just wanted to give an update to yall. I didn't post this right away because I wanted to review what I wrote when my head was clearer and to make sure my dad was cool with what I wrote about him even though to me it doesn't sound bad or anything.
Since Friday I'm doing better, in some ways a lot and in others not so much, but better nonetheless emotionally. I wish I could say physically but Saturday night I took a nice tumble in our kitchen which has me pretty sore still. And of course my "little friend" my chronic pain is there as always. This is still overwhelming, scary and confusing but I can breathe a little easier now.
Thank you everyone for yalls support I'm still in great need of it along with my parent's. My support page on facebook- Support for Aly, will be updated on any progress we've made.

Until next time,
Aly

Neurostimulator Update

Yesterday, I got a letter in the mail and broke down in tears. My neurostimulator was denied. I am heart broken. It took awhile for me to calm down. I'm still processing it all but my parents are determined to get me my stimulator one way or another.

First route is to resubmit but with more info and to include every and all medical record we can. If that doesn't work, we will find a way to pay for it and if we do go that route a fundraiser page will be set up so that yall can donate if you are able to.

This is my first time dealing with this kind of situation, I'm so use to doors being slammed in my face of not having any answers for me, to be a complete mystery. But to have the door slammed when I have an answer to relief, it hurts so much. Every time I think about it, I get tears in my eyes. Stress and crying makes my body go haywire so I'm slowly paying for all my emotions. I'm drained and part of me is just getting numb to the whole situation.

 Since our whole depression med change I haven't felt myself and my psychologist thinks it's because of me waiting on this approval so now not having the approval has me very uneasy. I'm doing my best right now but this is just so much to deal with so hopefully my psychologist will have some ideas to help me cope with everything.

My devotionals have been talking about not focusing on the future but on God which fortunately has prepared me for this situation. But I'm still overwhelmed and trying to figure out how I'm going to deal with this. 

So my readers, prayer warriors, friends, family, whoever you are, this summer I am going to need more support than I thought I would. These last 8 years have been tough, I thought we were over our toughest hours/years but I was wrong. We are so close to me being able to live a more "normal" life but several obstacles have been put in our way.

I'm lost but I'm not giving up, it's just going to take some time for me to get back up and start swinging. It sucks, I'm in one of those moods where I just need to go out and have some fun but I can't. I'm stuck. I can't do the typical "YOLO"/young adult thing and party or drink away the situation right now. I can't even eat my emotions out! Right now, all I can do is cling on for dear life until the storm settles.

It really sucks, I haven't been taking my pain meds that much, not because I'm not in pain but because I was so close to not having to deal with it, I'm just at home where I'm able to lay down all day I honestly didn't understand the need to take them all the time. But now what? I'm stuck even longer with them or my injections. I don't want that, no one deserves to live like this. 

I don't know why I just put up with the pain but I know I'm not the only one. So many of us spoonies just grin and bear our symptoms, I think because we understand there's no relief and unless we're attempting to go out and do something, it's easier dealing with it than getting frustrated with our meds not helping much as it use to or spending more money we don't have.

Sorry that last little bit got a bit scattered! If you want to be up to date on everything you can go like my Facebook page HERE