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 short goodbye to Texas???

So I'm currently suffering a bad flare of my IBS... right now feels more like Crohn's but basically i'm having stomach issues. I saw my doctor today and he wants to see if he can get me into Mayo Clinic. For those of you who don't know Mayo Clinic is a St Jude's for rare/crohnic/multiple illnesses. They have 3 locations Arizona, Florida, and Minnesota.

This is ver overwhelmming for me because most liekly only one parent can come while the other one stays and work. Money onviously is a big factor and i gotta leave home.... home where both my parents are, family comes and visit, my dog, and boyfriend is.... all of which keep me going... I'm really scared and although it hasn't been confirmed yet if i'm going... it's scary... Its proven time and time again at home comfort helps me heal the most. And we dont know how long i'll have to be at whichever place i go...

This is really heavy on me i can't sleep.... More updates to follow but please keep us in your prayers... idk how we're gonna make it but we will....