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.

The Meltdown

 "Upset" by sexfiend

This is part two of this series. Click here to read Part 1

This is where some people may draw the line, where what I'm about to say is considered "too personal." But then this blog would be pointless.  

I'll admit I tend to be emotional but never dramatic. But for the past couple of weeks I have noticed things building up and for the first time in awhile, I have not a clue what to do, I'm upset, I just want this pain to end and I want it gone now. I want to be able to go to school and work, I want to drive, I feel like I've been stuck at 15 in certain ways and it sucks. I don't want to be treated like a child or an elder, I hate it, I'm sick of my life revolving around my illnesses and it makes me mad.
And it sucks because people try to help me, but besides prayers all they can do is tell me "everything is going to be alright" etc... but right now, I don't want to hear it. Those words get so old so quick. I know people have good intentions but just because they do doesn't require me to take it that way. Surprisingly, this includes my family both biological and spoonie. No words can help. I just roll my eyes at the positivity and have everyone's thoughts and opinions dwell in my head making the subject stuck there even more. Having my spoonies saying they wouldn't be able to do what I'm going through just brought me down even more. Having my family say that they'll support me no matter what made me feel pressured somehow, I'm not quiet sure how but it did.

This is my "darkest hours" this is me, someone who is constantly told how strong she is, crumbling. And you know what? IT'S OKAY. We all go through times of trouble, we're SUPPOSED to. Even the strongest person has to stumble, and in my opinion, it's well worth it. Why? Because when you reach the light at the end of the tunnel you appreciate everything so much more. This is my time to gain new appreciation for the good in my life.

 http://blogs.guardian.co.uk/money/sick.jpg

Whenever I have serious thoughts in my head I tend to zone out real bad. I've been doing it more and more lately. My parent's have noticed this and have been talking to me. It get's really confusing. I know and have always known that my parents will do anything for me. That they know I'm 20, almost 21 so I legally make my own healthcare decisions. They help me with the facts and if asked, give their opinion. But both sides get frustrated and that can lead to heat. We're all tired of me being in pain. No one wants to see their loved one in pain nor does anyone want to be in pain.

Throughout the years I've had times when I was so emotionally upset that my parents know to just let me be. No matter how much they want to help me stop it's best they didn't. It ends much prettier when they do. Thankfully, we all learned that less while going through my teenage years (wow that makes me sound old!)  I'm honestly at a point where I have no clue what to do, I really don't. I don't want to give up but I'm so tired of fighting. I'm not an angry person especially towards others. But with this life (illnesses) I have so much hate, anger, and frustration towards it. It occasionally brings a real ugly side to me that unfortunately only my folks see and are victims of. Which makes me even more upset because I in no way intend to treat them like that especially after all they have done for me.

 http://warriorfitness.org/2012/05/16/muscle-confusion-got-ya-confused/

Recently I lost it after one of my parent's and my discussions. I went into my bathroom, started breathing heavy and just threw everything off of my counter. I stood leaning over the counter just trying to stay calm and doing my best not to cry but then I bursted into tears. I cried so hard that I just kinda crumbled onto the ground and curled up into a ball lying on the floor. Still crying my eyes out, I wanted my dog so I somehow managed to hobble over to my room, grab her, and just laid on the floor for awhile. I either passed out or fell asleep for a bit idk which. When I woke up I went into my bathroom to pick everything up. Of course, my body being the way it is was thrown for a loop by this meltdown and started shutting down, my parents were there to help me up and through it.

 "Frustration" by turnnburnkota

All of this has made me question a lot of things that once were all I wanted from life. I've always wanted a family. I LOVE kids. I just do. Luckily, none of my illnesses or medication causes infertility. But it makes me second guess everything. Do I really want to put someone through living hell? Do I want to make someone I love and care for have to carry me around? Is it worth putting all the burden on someone just so I can have a husband and kids? What if this is genetic and it passes on to them? I wouldn't wish this to anyone. So why should I have kids if there's even the SLIGHTEST chance of them having any of this? Do I want to put more stress on my family to help me and my husband raise my kids because I don't have the strength? The more I think about it, the more I'm against achieving those dreams. I don't want to drag anymore people down.

So often I just want to break down and cry. But crying just makes it all worse. It leaves you drained physically, emotionally and mentally causing your body to shut down. As much as we don't want to admit it, stress triggers many, if not all illnesses. Our bodies are still capable of having symptoms when we're not stressed or upset, but if we are, our symptoms can show up or make existing ones worse. Ever since March my passing out spells has come and gone more frequently and as you saw in my first post, frustration was building up. My approaching procedure didn't help me emotionally either. I went from being able to hang out with a couple friends to stuck in bed because of pain and exhaustion, my sleep "schedule" went out the door, and my appetite would vary mainly because of my several GI conditions. With my increased frustration there were times I wanted to give in. I wanted to cry, scream, and throw things. All I would think is how I wished I was healthy enough to go to the batting cages and release some of my anger. But my true self fought against my negativity. I can get through this, I don't need to waste my energy over something I can't control. That God gave me this battle because he KNOWS I can make it through. So now my body was at war against itself mentally and emotionally as well.

Emotional II Abstract Painting by K. Madison Moore

Thing kept tumbling down, I got new symptoms, "Great!" I thought, "more hoops to jump through. More possible test, specialists etc, I would have to deal with. " But I reassured myself that I got this. This is just my body being fussy. But within myself I was in denial. I was getting closer to breaking and like I tell my fellow spoonies, we all need time to be down in the dumps, we just gotta pick ourselves up before it's too late.  I wished I was in the movie "Click" where I could pause or fast forward anything. I was getting to a point where I just wanted it to end, I wasn't suicidal, but I wanted things to actually get better and have the pain go away.

And then it happened, the scariest moment of my life. I already had my emotional meltdown but this was my body having a meltdown from all the stress and pain. I was in the shower and like usual I had my mom close by to listen in case I fell or passed out. All I remember was stepping out the shower but what we think happened was as I was stepping out of the shower I passed out, my head hit the tub and my right hip hit the toilet. My mom tried to help me up but was unable to, she tried to get me dressed but I was in such agony it didn't workout. My dad felt uncomfortable coming in there since I was naked. I may be his child but I was his adult daughter who deserved privacy. Unfortunately, this was a time where health came before respect. They picked me up off the floor, got me dressed and laid me in bed. I was completely out of it, very lethargic and because my head hurt they were concern I had a concussion.

"I Don't Need Anything" by akirakirai

So off we went to the ER... Apparently I was in such bad shape when we arrived that they immediately put me in triage and then off into the trauma side of the ER. I was wearing a neck brace at one point and they did a work up on me which included a CT and X-ray of everywhere I was hurting. Everything came back alright.
But that wasn't the end, since  I was ok the doctor allowed me to have a shot of morphine. At this point I was out of a lethargic state but wasn't all there. I got confused, I thought I had an IV so I was wondering why they were going to give me a shot. Turns out they just drew blood and didn't put an IV in me. My response to all this was what my parent's call "the devil child" I started crying, screaming and yelling that I didn't want to. My nurse and parents tried to convince me other wise but I wasn't having it. They also tried to calm me down. It's no excuse but I think at that point I was so frustrated that I lost it again. I was tired of needles, narcotics, pain meds, nurses, and vitals. I was tired of, "Everything is normal! But we don't know what's wrong with her." I was tired of it all and at the time I wasn't me so I wasn't able to control my emotions.

During "the devil child" time I passed out several times in front of the nurse. They would wake me up but I kept going, my body had enough. I finally passed out one more time and they just let me be. I woke up later completely confused. I recalled grabbing my towel, remembered random spots of our way to the ER and that was it. I was asking a bunch of questions.
What happened?
How did we get here?
What was going on?
Why was I in a trauma room?
They explained it all, including "the devil child" moment. And for whatever reason, I was in denial, I thought that they were lying to me but I knew my parents would never do anything like that.
I was then presented another chance to have the morphine shot and I took it. Shortly after, the doctor was in to discharge us and off we went.

"Bye" by akirakirai

Since that incident I would break down crying randomly confused and scared about my procedure. Nothing my parent's said or showed helped. I was so scared. The thing that scared me was 1. I had to be awake and 2. a needle would be digging into where I hurted. All I wanted was it to get over and done with. There was much anxiety, stress, nervousness, and doubt. How was I supposed to be completely ok with this situation without the guarantee of success? My parents were concern about my emotional state but like previously discussed between each other, I was desperate for relief and willing to try anything that could potentially help even if it set my emotional or mental state for a loop. I was clinging onto hope that all this hell will be worth it in the end. That this indeed will help me become pain free

Staying Honest

It's been awhile since I've posted on here so to remind everyone (or to tell those new here) I remain honest on my blog. I don't tame what I say, I keep it real. I talk about how I'm feeling physically and emotionally. I don't do this to make you feel bad for me. I don't do this because I want attention. I do this for the other people who look at my blog thinking they're alone on their journey.

This is the longest time in awhile I haven't felt good in awhile. Normally I would go through a flare for a couple of weeks maybe a month. I am going on 5 months now. If you know me personally you know I am generally a real positive person. You can tell me we're all dying tomorrow and I would think well at least we have one more day. But these last couple of weeks have been tough. This week I was actually starting to feel good. It made me so excited and happy. But you know how life is.... I guess it truly started when I woke up at 5pm today. I slept almost 12 hours... didn't think much of it at the time. I was a little frustrated but not much.

I went to our churches fish fry and shortly after finishing eating I started to have an upset stomach I thought no biggie I just need to relax and it will go away. So my dad went to get the car and took us home. I rested and started to feel better.

Around midnight I got drank some water and shortly after had to run to the bathroom to throw up. I ended up throwing up alot. I was walking back to our living and I passed out. When my dad woke me up I felt super weak, my dad had to help me A LOT to get me up. I also felt very weird, I sill cant describe it exactly I just felt... weird...

My dad took me to bed and I laid there for awhile and everything slowly went away except the weirdness. I still feel it but  not as intense as earlier. What's also weird is I feel very out of it and exhausted but my body is and looks wide awake (even though I look like death) 

Emotionally, I'm drained...I'm numb...I'm frustrated... I'm stressed... I'm overwhelmed... I sometimes feel like scream, crying and throwing things on the ground. I'm tired.... Sometimes when I can't sleep because of the pain my mind wanders... it goes off and thinks how my life would be if I didn't have to deal with all of this... The education I would have received, the achievements in sports and music I would have accomplished, the friendships I would have made, and then to where I would be right this moment. 

I think about how 50 jumping jacks feels like running 1 1/2 miles.... how playing half of a song feels like I've played for 4 hours... or going to the store to grab a couple things feels like I've been doing errands all day...

I know the people who know me is thinking this isn't the Aly we know. And you maybe right, but we all go through "dark times" I feel this is my time. I know yall think I'm open and honest but truth is sometimes I hide things. I hide how much I hurt because I see how people act if I barely limp in pain or have to hold on to someone or seeing me in a wheelchair. I distract myself and focus on others to avoid revealing how emotionally torn down I am dealing with everything. I had the physical and emotional pain because I see the pain in those I care and love the most and yes in my more naive years I hid it so I won't loose them either. 

Strong people fall, happy people aren't always happy because we're human. If you've ever come to me when you're not feeling a positive mood you know I always say this; We're human we are meant to be imperfect. We're meant to feel both positive and negative feelings. We go through dark times so we can appreciate the good ones even better. That going through rough times make you stronger. so these last couple of weeks I have let myself feel these negative feelings to a degree. Because of all the weight of dealing with everything when I first fell I'll I got really depressed. I would have suicidal thoughts and stuff but never acted on it. So now if I ever get down I make sure I don't get to that point. 

The lesson life has been teaching me recently is to take care of myself. That what I consider being selfish isn't selfish it's my humanness and I need to take care of myself. SO this is me taking care of myself. This is me letting myself go through my emotions. This is me realizing I'm weak and that the only person I should be helping right now is myself. No this won't be an everyday pity party for me... I'm just catching my breath before I pick myself up, dust off, and move on

Beauty in Pain and Suffering.

Now I have to admit, things have definately haven't gone the way I imagined lately.... And for the first time in a long, long time, I've asked myself why... I've gotten down and really depressed, still kinda am but not as bad...

But when  I was questioning why dont I just die or why cant i live life something kept playing in the back of my head, how Saints I've looked up to suffered and took the suffering. Now, I probably went around this the wrong way at first.. maybe still am... I would just not take any meds and not tell anyone (sorry mom and dad) They suffered physically, emotionally and spiritually. They did it for the glory of God. But I cant help but wonder how did they know? Some of them had encounters with God we know about but what about the others? How did they know? I'll admit I haven't been the best Catholic lately, but I do have the faith, I trust that God is doing this for a reason but I just don't know why..

And then there's today... Good Friday... when Christ went through so much torcher, pain and suffereing for the sake of us to have eternal life with him. Now, I am in no way comparing myself to Christ or Saints I'm far from that but it gives me strength in some weird way.

I've accepted that the life God has for me currently is a lot of pain, lost friendships, loneliness, a whole bunch of frustration, tears, and yearning for normalcy. I've accepted that there will be things I cant have and things I can but still have to bust my butt to get. I've accepted that jobs, school, and anything that I will have to be considered "relliable" for will come and go because its my health isn't reliable. I've accepted that the life I have hardly anyone can relate to or come close to even understanding.

I know I've come a long way from 7 years ago but the cycle gets very old... and now that i'm more aquanted with the real world... it sucks even more to try and wade it out or watch how much medication I take because of cost... Or to not complain and fight through so I can make money and go to work instead of going to doctors or hospitals and putting my family's money down the drain.

But that's probably the toughest part. When to fight and push and when to get help. I know anyone in life has issues with that in life such as when their coming down with a cold... It's just hard to keep hope... with hospitals they just get me comfortable run test, find nothing, release me and tell me to talk to my doctors... with my doctors its ok lets talk to all doctors check things out, nothing is ever found.

Now that I have this adhesions problem its a debate to open me or not... you see adhesions can't be seen unless you open the person up. It's a film your body produces and surgery can make it more likely, people can go their whole life with adhesions and not have a single problem, others arent as lucky. The two times they removed adhesions I got lucky because it was a ticking time bomb until i lost whatever part the adhesions was slowly wrapping around. They're occuring more often... and so far, there's no way to prevent them... so its open, remove as much as we can, close me up and hope i'll last for awhile...

I wouldn't wish this life on anyone... be it the physical pain or seeing it affect your loved one. The pain I see in my parents seeing me like this, is the worst pain imaginable... The look on my team of doctors and nurses face.... is just as bad... to see them clueless whats going on and how to help... I've been wondering what's worst, being told you're going to die or being told they don't know whats wrong.

i've also been wondering that what if there's one single underlying cause of this all... something so rare that people who are helping me now dont know about it...

A typical young adult thought...

That sums up how i'm feeling right now... Tempted to go into things that is easy money to get me by but not really wanting to unless I'm really desperate... And then I think about college and how I need to save up for that but I also need a car.... 

     

From that I think what do I want to do/major in. Yes my dream is to do Art therapy but i'm trying to be realistic too... And the problem I always have is i love everything I try to do that I have so many options instead of narrowing it down... which gets frustrating... There's also the problem of trying to be realistic but not settling for less... I still have the dream of being a marine bilogist so I can live and breathe nothing but dolphins at work. 

I know people go through what i'm going through all the time with so much uncertaincy but man can it bug the crap out of someone!!

Sorry I needed to vent. Aly out!

let's talk about love...

Ok so I haven't slept at all so if I make no sense what so ever, you know why.
I want to talk about love. All our life we're told what love is or how to love. But how can you do so? There's the five love languages, which are different ways how you show someone you love them and how you desire to be loved. For those of you who are not familiar with this I'll briefly explain them. The first language is Words of Affirmation- i love you, you look beautiful, what would i do without you, etc. The second love language is Quality time- putting down the remote (or laptop) to listen to someone. The third is receiving gifts, as in THOUGHTFUL gifts, such as, oh i saw this at the store the other day and I totally had to get it for you. The fourth is act of service- no, let me do the laundry this time, hey I'll watch the kids tonight you guys go on a date. The last one is physical touch, and not just the behind the closed doors stuff, its holding hands, a pat on the back, or even a high five.
The five love languages are not just lover to lover but on any type of relationships. You can show or want more than one kind but most the time one or two dominates.
     So proving there's different ways to love brings me to my next thought. I myself have truly been in love 3 times. I personally believe there are different kind of love, now bare with me here people.
     My first love was i guess what you could call puppy dog love, ya know, you love everything the other person did, there was no pushing of buttons, you both liked the exact same thing and if not they introduced you to it and you fell in love with it. There was not a thing in the world this person could do wrong and you thought they were perfect if not, near it. You most likely never ever fought with this person and hardly had any negative feelings.
   My second love is my high school sweetheart. Guess we can call it blinded by love? This love when it happened was like woah, ok this is love, like REAL love that people get married over. You would do anything and everything to make that person happy even if in the very end it was getting rid of you. This love can be complicated, there's a lot of back and forth. You go through stages where when you are in the separation stage you fight for yalls love. Ya know the take me back please, i can't live without you etc. But then there's also a short most of the time, acceptance stage where you just care about them being happy even if it's not with you. I call this blinded by love because it is not till after the whole relationship is over do you see the persons flaws and wonder how the hell you stayed with that person for sooooo long and was able to put up with them. It is also a blind love because you have a "reputation" or mold to fill and constantly feel forced, aware or not, to act, be, or even in some people's cases, look a certain way. Don't get me wrong, this love can be amazing and a lot of work but in the end has you scratching your head sometimes.
  My third and current love is by far the best. I'm not just saying this  because I am currently with the person and doubt he reads this blog.... probably doesn't even know I have this blog.... anywho... I don't want to call this true love or the one because it'll be considered cheesy, so let's call it the accepting love. This form of love is when you can tell this person anything with no hesitation. Blunt honesty, no stutter, no trying to say it but you get tongue tied or just can't spit it out, you're always just able to tell them. Its something I've never had in any relationship before except with one other person who is my i guess girl version of my boyfriend. It's amazing because they know ALL of your dirt, how you think, how you're annoying, and yet don't judge you which means they never think less of you. These relationships you are able to tell things you've NEVER or have had a hard time telling other people about. Example, my boyfriend knows things about what I've been through that no one else knows. Yes. That kind of love.
     Which brings me to the point of this post. All our lives we wait for what we were taught or view love when most likely it's not going to happen that way. I mean my generation grew up with this poor poor girl gets saved by a knight in shinning armor, because a princess, and lives happily ever after. umm.... reality check??? Or society now is saying love is sex and lots of it. Now don't get me wrong with this next part, i LOVE my religion and faith I truly do, but we're taught that if we devote ourselves to our faith we'll find our significant other... ya know, the whole "A woman should be so in love with God that a man must seek him in order to find him" now I'm not saying that doesn't have truth in it. I believe God makes what should happen happen regardless but, I disagree with the whole we must be so devoted to serve him to find the one.
     Keeping on the religious note, God even has different ways of loving. There's the ever loving and forgiving  and tough love side. Just like our parents. Even that brings up another love which I'll just categorize as family.
     We're taught about love all our life. When all I think is to it is this.
You'll know love when you have it.
No how to, no what to expect, no building of expectations, just plain and simple. Because we all love in a different way, show love differently, and at least in my case feel love differently with different people/relationships.

First time

So this is your warning.
Content is for mature audience only... blah blah they put yeah..
I'm only putting this because I know it can be traumatizing and I might have readers that are young, so this is your WARNING that sexual content is within the topic.
OK moving forward now, this is also my first time blogging/ publicly sharing so yeah bare with me.
     I am to the point in my therapy where I have control of my body. But I am still not full healed because honestly, I don't think one ever fully heals after being raped. You just learn how to continue on and not let every little thing get to you. I am to the point where I go months without triggers etc but then my mind will start thinking about it so i have the tossing and turn, flashback nightmares, etc we PTSD(post traumatic stress disorder) have. But I'm proud of myself. It's not once a week, there's times between, I no longer wake up screaming in the middle of the night and so much more.
     I use to not be able to go to certain areas, certain smells set me off, every day "humor" about rapes got to me so bad, just about anything could start a trigger for me. I was use to hiding things because of always being constantly in pain. But sometimes it was noticeable i was leaving but unsure why. Sometimes I didn't even know why. Yall who know me know that i'm pretty good at composing myself, if I'm upset I don't show the whole world but I also can't help it at times. At the same time I'm emotional. But the normal kind of emotional. I see girls who get worked up about the stupidest things.... I can't stand that! Yet when I was dealing with this every little thing set me off but I just buried it deeper inside.
     I struggled with depression, times where i would just be in my room or bathroom and cry.... I would have a war inside my body,
                  "should i cut?.. no, no, no, no..... you're smarter than that.... well how about kill myself... no.. not that either doing that would just devastate everyone and make the haters feel like they won.... but i don't want to live anymore...i know, i know, but just remember, everything has a reason,.... yeah, but maybe if i do something the pain would stop just for a little bit... Alyssa, stop...."
     I was always able to coach my way through those situations and even my flashbacks but it was still difficult. I knew everyone could tell I was fighting a battle but I wonder if they really knew how bad. Quite frankly, I'm lucky to have never been in the crazy ward and I believe that's because of my faith.
     But getting back to why I started this post... It's something that's been bugging me and I try to work on. You see, what happened to me was done by one race, that's the only thing these three guys have in common, they're race, and ever since then I not only have my wall built higher for everyone especially guys, but for this race. Those who have assault me through out the years were white... some of you are thinking you know so many white people though. Yes I do, but most of them I've known since I was little and they're like brothers to me. So I have no fear around them, I know they wouldn't do that to me and I know if they found out who these guys were they would have to dig a hole to bury bodies in. But every guy who wasn't one I've known my whole life had a huge barrier. The other week I mention how this 19 yr old was looking for extra money and he ended up hitting on me cuz he thought i was pretty. It sucks because this caused a trigger. I hardly ever get hit on by white guys and the first thing to pop in my mind was that he just wanted to get some. I know it's an unfair stereotype but sometimes you cant help it... Just a couple nights ago they cleared up and it had me reflecting on how I've been and I feel bad because the barrier is so high for white guys in my life whether they're young or old it doesn't matter. I thought it use to be guys who were straight up gingers, the really red hair and pale skin but obviously it's not.
     I know a lot of you are going to think I don't need to say this but I just want to apologize to those of you who are white and those of you who are a guy, I know I shouldn;t judge you for someone else's actions but I can't help it