Am I Allowing God's Will?

Ok so I apologize now if this post is weird, I'm currently working on this on my phone so we'll see how this goes!

Now, I know you're either thinking based on the title this is how to reflect on if you're allowing God's will to be done or you think this is a very bizarre topic for me to talk about but both are wrong.

This is a reflection I just had moments ago which is why I'm taking the risk of writing this on my phone instead of waiting until later. I will say I did take pain meds about 2 hours ago so if I make no sense, thank the meds. Lol

So why am I wondering if I'm letting God's  will be done? (This might be borderline TMI for some of yall) Well, I have been medically on birth control for several female reproductive illnesses I battle, and thanks to a youth minister I was informed the church is ok with women being on birth control if it is for medical reasons and there aren't any other options or those options didn't work out.

Anyway, I get a shot every 3 months for my birth control rather than taking a pill everyday. Unfortunately, these last 2 months my medication has stopped working and my doctor has informed me she wants me not to have a period at all which means no estrogen for me. My birth control has to be progesterone only. So after learning the differences between the two I went to all my spoonie groups and asked for suggestions. Up until one point, it was either stay on my shot or try a thing they implant to the inside of your arm. Well, with that implant there is a wide variety of responses to it. So wide, I wasn't comfortable asking my doctor about it. Everything else I was suggested would most likely be shot down by my doctor because you either still get your period or it has estrogen in it. And the only other option to stop the pain and cycle is to get my tubes tied like many women have to do because of one of these illnesses. One girl was telling me this and I told her that I will not let a doctor do so no matter how much pain I would have to do because I wanted to have have children.

But that is when a lovely lady informed me how to find progesterone only pills. Which thrilled me! I could stay on those pills or go a more semi permanent route and get the implant the pill works out. Yay! Game plan!

Later on, as I'm laying in bed I started thinking about all my dreams in life but I was also thinking about God and how I truly want to be what I feel God wants me to be. And then it hit me, am I being selfish? Apart of pursuing the vocation of marriage, you and your spouse have to be open when it comes to children. You allow God the potential to havr children. For some people, having children doesn't happen and there are differences in feelings with that news.

Everyone who knows me knows I LOVE children, I'm dubbed an aunt to many of my friend's  kiddo, I help with advice when they don't know what to do and it is known that if I'm feeling well enough I'll be a mommy helper or babysitter, and expect very little in return. I have and will always want children. In fact, it is that very reason that I stopped pursuing religious life because I felt called to bare child.

But a lot has happened since then, including my female issues getting worse. Tonight I started questioning if that was a sign from God or if this struggle is something I'm supposed to go through. Am I being selfish? That my dream and want for a child is blinding me from doing what God truly wants me to do? Or am I on the right path in refusing a procedure that wouldn't allow me to have children?

Hard stuff. And frankly, I have no clue! I'm going back and forth in my head seeing signs of both sides. I haven't dig deeper into the church's teaching on vasectomy, I plan on doing so later on so maybe when I read that it'll help me see a clearer  picture. I truly hope so because  I owe it to God, if it wasnt for him, I would be 6 feet under in all seriousness. I may not be what other catholics feel how a Catholic should be and think, but I'm being me. And since having Pope Francis, it seems as if my approach on the world and others are acceptable. The areas I'm not is to be expected though, we're human, we have to mess up/sin somewhere. It's not an excuse but the truth. One I have struggled with while I was in high school but that's another blog post.

So what's the point of all this? Purposely, nothing. This is just me talking about my life, letting yall in and helping myself out. And who knows, maybe there is a purpose! Maybe one of yall have something that will help me figure things out! Or hearing my story will help you!

I'm not saying everyone needs to rethink their dreams and change them because you think you're being selfish. Most likely, if you are of faith and probably several who aren't of faith, your dreams involve the gifts God has given you, and if you are of faith, you have opened yourself to God, you have allowed him in when it comes to what path to take. But we are human and we do mess up. When you think about it, it can be difficult to figure things out. Something bad can be something you're supposed to deal with to reach your goal or it can be the devil trying to stir you away. Same can be said about good things that happen, great things can be happening but that's the devil pulling you in or it can be God saying, "yes! You are doing the right thing and I'm proud of you." That is where prayer and developing a relationship with God comes in handy. And not just the 5 second prayer to ask for a sign, but a true and genuine prayer allowing yourself to have a conversation with God.

I think it is wise to think about your goals and dreams sometimes and question asking if you're doing God's will. But letting it consume you isn't what God wants because that will stir you away from the present which we all should be living in.

Until next time,

Aly

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

The Build-Up

If you know me, or have had any interaction with me you know I am a very positive person. 

I've been told all the things a positive spoonie hears: 

"You're so strong!" 

"I really look up to you."

"I don't see how you do it." 

"It's amazing how strong your faith is."

And honestly, it's comments like those that keep me going sometimes. 

Michael Ancher, "The Sick Girl" 1882

Because the truth is, the people in my life don't see the Aly at home or in the hospital. You get to see the Aly having a good day or the Aly that is pushing herself.

Very rarely will you see at home or hospital Aly. It's not that I'm afraid, I just don't want to make a scene or make anyone uncomfortable. I don't want pity or sorrow. I don't want you to feel even worse for me. But this post isn't about that. 

This is the straightforward and blunt Aly. And the reason as always is, I want to show my spoonie family that yes, we all have those completely blinding dark days that we think we will never escape. I'm here to show those who are healthy that we spoonies honestly hide so much from yall. There's a reason why they're called invisible illnesses. But like I said earlier, this post isn't about that. This is a post about a spoonie being completely honest.

Almost a year ago I went on my journey with my amazing family to Arizona in search of answers from one of the top hospitals in the country. We got some answers and I had a pain med injection which had me pain free. Unfortunately, my body plummeted  after several months, I was back in pain which obviously was very frustrating. Thus started more doctor appointments. I got a pain management doctor where I live, Awesome! I thought, we'll just have them repeat the procedure. And so it happened. But I was still in pain, turns out there was 2 different set of nerves and that x-ray injections are different than ultrasound injections. So due to the second set of nerves that didn't receive relief I got another. My doctor then mention a procedure to burn the nerve that was causing my pain and cease it I was so excited I thought I have found my holy grail! My pain came back less than a month after so we schedule the nerve burning procedure for this coming Wednesday.

Since my pain came back things have become very difficult. The daily frustrations were my "normal" and didn't really affect me that much. However, having a procedure that I had previously that last me 6-8 months barely last me one, troubled me. I did what every human being does during tough times and started asking why. 

Why me?
Why didn't it last that long?

Why am I experiencing intense pain?
Why must I go through this and when will it end?

Credit Unknown

As time went on, my pain became stronger I went from using my cane rarely to using it every time I got up. My pain doctor prescribed me a high dose of hydrocodone and I'm stuck taking them because it's that bad. Even then, it doesn't do too much for my pain and I hate it. I don't like the high it gives me, I try to go back and forth between that and my other pain med that isn't a narcotic. Narcotics scare me. Not only is there a potential for addiction but the side effects can make my GI issues worse. My energy went down the drain. I would sleep through weekends only getting up to eat, drink, and go to the bathroom. 

I HATE this but I keep myself preoccupied so I don't think about it. Needing someone to help you walk around sucks. Not being able to just get out the house with just anyone sucks. EVERYTHING ABOUT HOMEBOUND SUCKS! This isn't the life you're supposed to have in your twenties. You're supposed to struggle surviving school and finding the balance between working enough hours to pay bills but while still having time to study. You're not supposed to struggle getting to point A to point B or questioning if it's really worth getting out of bed when no one is home just in case you pass out. Although not having to deal with the now 100 degree weather is great and probably the only good thing in this situation.

I thought hanging in there till my procedure would be a manageable. It was at first, because all I did was sleep. But recently it has become increasingly difficult. When I had my appointment to set up the procedure I was in so much pain, my dad was with me in the room because I was crying my eyes out. My doctor was explaiing the procedure but I was unable to think so any questions I had didn't get answered. And either dad was okay with it or felt it was not his place to ask questions. So I reached out to my spoonie community, did research online and learned what I was getting myself into. I was already scared, just the injection procedure hurt so much more compared to how it was at Mayo. I was traumatized by my injections and now I'm expected to go through that again but also have it a little more invasive.

I couldn't find many people who have had this procedure so I was in the dark. But the few I talked to and the ones I found on message boards didn't help at all. All I saw were people who backed out or said the procedure was living hell and at most, had relief for almost a year. I was told that this would give me 1-3 years of relief and the way my doctor explained the procedure was totally different. (But I was looking up the same procedure.) My intent was to find information to help me calm down, not to make me worse.

I'm already scared and nervous at the fact that I have to be awake for the procedure. Sure, I'm sedated and they slightly numb  but no one willingly just allows a needle to be jabbed where they are having pain. My doctor told me I would have to help him find where it hurt the most. I would be less upset if I was guaranteed results but I am not. I'm apparently crazy/desperate enough to let them do it anyways. Frankly, I'm scared shitless, I can't sleep... I just... I can't... I just want to get this over and done with because being stuck here waiting is so intense. My pain is already bad enough but the added, I guess, emotional and mental pain is overwhelming. But of course, my health isn't the only thing I have to deal. There are many things in my personal life going on as well and it's not all rainbows and flowers.

I commented on a fellow spoonie post. The topic was that people think cancer is the "worse" chronic illness out there. But all spoonies know no illness is greater or lesser than another. A lot of "normal" or as I like to call it, healthy people tend to ask if my illnesses are life threatening and when I say they're not they try to be positive and say, "well that's good!" Sorry to disappoint you but it's not. To me they're equal. Obviously having your life at risk is huge but so is your life completely changing and never returning back to "normal." Not having your life at risk pretty much means living hell for the rest of your life. And honestly, if any of my illnesses were life threatening it would make saying yes to every procedure, surgery, medication etc so much easier I feel. Knowing my numbered days are coming quick I'd do anything to stay fighting and have a good day to simply enjoy everything. But this isn't fact because the only way we can know for sure is when we're in those shoes and thankfully I'm not.

Having a non-life threatening illness that you know causes pain for the rest of your life makes you question the things to "help" with pain. Part of me feels like what's the point. What's the point if I'm going to put my body through more trauma for a possibility of it helping me? What's the point if it does help but doesn't last that long? Is it worth trying whatever new thing that's out there? Or something that is questionable? What's the point of wasting so many people's time, energy and my parent's money on something temporary and not long term? I sometimes wonder if I should just stay at home. But that's not fair to my parents. They deserve for me to out of their house and paying for all of my medicines, doctors, etc..

You face a lot of questions being chronically ill. You just have to learn to let yourself feel the proper amount. Life isn't made to be sunshine and daisies everyday, we are made to struggle. But it doesn't mean we should just waddle in self pity forever. There is a time and place for everything. You fall, let your body/mind figure out what's going on and then you pick yourself back up doing whatever needs to be done and move on.

This is part one of a two part series. Click here to read Part 2

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....