MY HIP.

So the last thing that everyone heard about my hip was that the cool needle in the hip procedure I had done found a Labral tear in my left hip…we didnt really know what to do next since the doctor didnt seem to want to help me at all, but after we talked to our specialist, we made an appointment with the ONLY hip surgeon in this area that has done the labral tear surgery (successfully) on someone with Ehlers Danlos.

So then we waited…….

and waited……

and waited…..

3 whole months to be exact…

after seeing so many mean doctors and being so discouraged throughout my life by doctors who didnt believe me, all I wanted was for this doctor to be nice.

I just needed a kind doctor. 

I didnt even care what happened to my hip at that point I just needed a caring doctor. 

plus, if he's the only one in this area, I'm stuck with him!!

I walked into the appointment at the beginning of january with my sister and my dad, still praying for a kind doctor. 

AND HE WAS SO NICE. 

He is probably one of the nicest doctors I have ever seen. Thank you Jesus!!!

God knew thats what I needed, especially now. 

After he looked at my X-ray he told me some news I didnt expect to hear..

It turns out I have hip dysplasia and femoral anteversion, which I was born with. I didnt really know what that was but all I could really process is that the surgery is gonna be a lot bigger than I expected.

To make a very long story short, if I don't do this surgery now, I will need a full hip replacement in my mid twenties. 

So basically what the plan is now, is to get a CT scan of my hips to decide wether or not they will need to surgically fix the Femoral anteversion, which my doctor believes they will. 

Wether or not they do that, they will still have to fix the tear and the dysplasia.

The surgery for the hip dysplasia is called a Periacetabular Osteotomy (PAO), which basically means cut the pelvis and move it so its in the right position. (you can google it, its weird)

and the surgery for my femur is the same…cut and move..

Scary right?

I will update everyone after my CT scan, but for now, on march 16th, I will be having two procedures done at the same time and possibly a third.

With such a big procedure, I will not be able to walk for at least 2 months, and after that I will have to pretty much relearn how to walk on my newly positioned leg. 

Throughout the whole process of planning the surgery, the only thing that makes me upset is that fact that 3 other orthopedic doctors missed this…

They simply didnt believe I was in pain so they missed such a big thing, thats causing such a big change in my life.

but through it all I know God has a plan.. He knows what he's doing

and  maybe he just wanted me to have this kind and caring doctor I've always dreamed of. 

Thank you everyone for being so kind to me as always, I will update you all throughout the whole process <3

Anxiety.

I told myself that I would be honest through this blog, so here goes. 

I have struggled with anxiety for a long time, neither myself nor my parents realized how bad it was until a couple years ago when I started having panic attacks. At the beginning I didnt understand that they were panic attacks, or even what that was until my mom brought it up to my doctor and I was put on medication. That was such a relief, symptoms I didnt even know were from my anxiety started to disappear, but they didnt help completely. The medication pretty much just took the edge off everyday so I could function better, but certain things and certain situations still cause me lots of anxiety and I still have panic attacks. Because my mom has had problems with anxiety and panic attacks she was able to help calm me down, but it didnt always help, and she wasn't always there. 

After countless nights of not sleeping, lonely panic attacks, and feeling paralyzingly anxious about silly little things, I found a simple solution.

JESUS. 

Seems so simple, but yet so hard to figure out sometimes.

I learned that simply laying down, and listening to a playlist I made of Kari jobe, steffany gretzinger, and bethel songs, I would find peace. 

PEACE. In the midst of such worry, God would calm me. These songs are Gods way of saying to me, "hey, I got this. I love you. Things will be ok." 

No matter the medicine I am on, the techniques I learned from therapists,  or my moms soothing words, the only thing that has ever calmed me down is God through these songs. 

So with everything so crazy and stressful in my life, especially these days, I knew I needed a constant reminder of these songs, and of Gods love for me. For those scary times when I don't have access to the songs, or when I'm in public and the crowds make me shaky. I wanted to remember to focus on him, not me. 

Thats why I got this; 

The words "You won't lead me where you don't go." from the song "We Dance" by Bethel

To make it extra special, its in my moms handwriting.

I wanted it close to my heart to constantly remind me, and to keep it to myself. I posted this picture, (and this blog), because I decided that even though this is so personal to me, that maybe I could help someone through this, and through my experiences. 

I AM 18

its my 18th birthday!!
is it weird that the most exciting part about turning 18 for me is being able to sign my own doctors papers? oh well

This week has been full of ups and downs, trials mixed with joys.


So many joyful things have happened, but I've come to expect that when happy things happen, the devils gonna try his best to ruin it for you. And thats exactly what he does.

The beginning of the week started with me dreading my birthday almost, this isn't how I wanted to be when I turned 18.

I wanted to be away at college, healthy, having a great time.

But I've been living at home and sick.


This broke me apart.

Its now been 5 years since my health first went downhill. Back then I had hopes that I would be better by now.


With the help of some people, I told that thought to go away.

Im exactly where Im supposed to be right now, and Im exactly where God needs me to be.


I can feel that great things are going to happen and with Gods help I can do anything.



So this is my reminder:

Psalm 91

1 Those who live in the shelter of the Most High
    will find rest in the shadow of the Almighty.
2 This I declare about the Lord:
He alone is my refuge, my place of safety;
    he is my God, and I trust him.
3 For he will rescue you from every trap
    and protect you from deadly disease.
4 He will cover you with his feathers.
    He will shelter you with his wings.
    His faithful promises are your armor and protection.
5 Do not be afraid of the terrors of the night,
    nor the arrow that flies in the day.
6 Do not dread the disease that stalks in darkness,
    nor the disaster that strikes at midday.
7 Though a thousand fall at your side,
    though ten thousand are dying around you,
    these evils will not touch you.
8 Just open your eyes,
    and see how the wicked are punished.

9 If you make the Lord your refuge,
    if you make the Most High your shelter,
10 no evil will conquer you;
    no plague will come near your home.
11 For he will order his angels
    to protect you wherever you go.
12 They will hold you up with their hands
    so you won’t even hurt your foot on a stone.
13 You will trample upon lions and cobras;
    you will crush fierce lions and serpents under your feet!

14 The Lord says, “I will rescue those who love me.
    I will protect those who trust in my name.
15 When they call on me, I will answer;
    I will be with them in trouble.
    I will rescue and honor them.
16 I will reward them with a long life
    and give them my salvation.”

Everything I need in one place. He knows me. 

Am I better??

I know I haven't posted in a while, and I'm sorry for that!! Lifes just been a little crazy trying to keep up with school work, while commuting, and all that stuff. But heres a little update.


After a crazy appointment with a crazy doctor (read my moms blog to get it) we figured out I have a labral tear in my left hip. So thats fun. So we tried to figure out what that meant, and how to fix it, but that doctor just didn't want to help us. So we went to our EDS specialist, he told us that right now the only thing we can do is physical therapy and in 2 months if its not getting better, then we go to a hip specialist and maybe get surgery. But I don't want to think about that, what I do know right now is that I can walk more. My doctor told me that unless I move my hip past its normal range of motion (which I do naturally…..) walking won't hurt it. Yeah walking will hurt me….but it won't make the injury worse. SO. I started using crutches to get around and thats when people started with the "YOURE GETTING BETTER!! YAY YOURE HEALED!!"……




At times I've also started to walk with only the brace and not the crutches because they are doing more damage to my arms than they are helping my hip. Using the wheelchair one day….to using the wheelchair the next. That really confuses people.



so that led me to think…..Am I getting better?




My hip only hurts slightly less than it did when I was in the hospital, and thats because of the pain meds. Ive just learned how to deal with this pain, just like I've learned how to live with the other pain I have. I find myself constantly needing reassurance from myself, and sometimes others, that I am actually injured. Maybe its because I've been taught my whole like from doctors and peers that I'm faking everything and nothings wrong with me.




but after getting stabbed in both hips and put into an MRI machine for two hours.


I got two things:





This cool picture of a needle in my hip

And actual picture, documented proof, that I'm not crazy. A visible tear in my labrum. Nice.



I guess its just nice to have proof after every test coming back saying I'm completely normal and nothings wrong with me.


But do I really need their validation?

Im just trying to ignore the stupid people that don't understand me and my life, cause I know that my hurt is valid. I know that my hurt can be healed by God. I don't need all the doctors or all the kids in my classes, or strangers who don't know me, to know the truth. They can think what they think because my God KNOWS the truth.


I say this every time but I am so thankful for my loving family and close friends that make me feel validated and don't make me feel like I'm faking it all. I am so lucky to have such a great support system.

so now as I try to continue my life as a freshman in college, I will not feel weird about needing a wheelchair one day and walking the next day. My body is mine, and I need to treat it kindly. 

College series #3: Im Overwhelmed

I am so overwhelmed.

Everyone has been so amazing and kind to me on Facebook and my blog and it fills my heart with so much happiness. 

I was struggling with the thought of how people would react to me in a wheelchair at school. Especially after the first two weeks of being there with many people questioning my authenticity. With the copious amount of students and some faculty doubting my sickness, not believing me because I can walk and look normal, it frightened me to think of their reaction to my now visible illness.


But last night I realized something important. God didn't make a mistake when he made me, he knows exactly what he's doing and he has a reason for me being this way. All of this will turn to something good and give glory to God. I know it. Thats what makes it all worth it.  I have all of you guys supporting and loving me, so why does it matter what some teenagers at my school think?

Thats not whats important, I need to surround myself with the people I know care about me and take care of myself. So this morning my loving sister and mother brought me to class and pushed me in a wheelchair. The whole class stared, that was expected. Slightly embarrassing of course, but I tried to remember that my health is whats important, not their view of me.

When I finished my second class my dad was outside with a motorized scooter for me to use so I didn't need to have someone push me. I am so thankful for a father who takes time off work to help me. 

So for my next two classes I was able to scoot around, only hitting a few people… and make it to class by myself. The reactions I had on this were slightly different. People thought I was using it for "fun". But some people knew. A couple people offered their help, obviously feeling bad and not knowing what to do, while others ignored it and just stared. I don't blame them, I don't think I would know how to react either. 

After my classes I went home and slept, but Im still filled with the joy and comfort knowing that so many people have offered their prayers and help to me and my family.  I truly am thankful for you all. I feel like I need to turn this journey into one of happiness and joy, helping and encouraging people as I go. Why not make it fun?

Thank you again to everyone who has encouraged me. God knew that I needed that. 

P.s. thank you Pastor Mike for this picture 

College series #2- Hospitals and wheelchairs

Right now I'm sitting on the couch watching tv with my dog curled up next to me. Living the good life, right?


 But the truth is, I can barely walk, and when I do I need someone to help keep me stable. Im also on a lot of pain meds so if this blog is weird, thats why. ( my mom said I would write better with the drugs….thank you..?)


Since I moved into my dorm 2 weeks ago I've been doing a little more walking than my body's used to. Even though my campus is very small, and my classes are in the building right next to my dorm, my bodies not the best at walking. Plus I subluxed my hip on move in day(NICE!). So for the past couple days my hips and knees have been hurting more and more, which I expected was due to the foolish amount of walking I was doing. Nothing new. But last night I came home to go to church with my family. A normal wednesday night. As I sat through the wonderful preaching of Pastor Rodney, the pain began to be unbearable. If you know me, I hide pain very well, and very often.
But this time I couldn't. When service was over I went to stand up and I ended up falling right back down and crying. A wonderful group of people from Calvary Chapel came to help me and prayed for me. Thank you. After a while of sitting there, they ended up getting a wheelchair to bring me to the car. Thats when I lost it. Ive never liked attention on me. Ok thats kinda a lie, I like when people pay attention to me, but not like this. I want to be in control of my body, but I couldn't hold myself up. Ive never been embarrassed easily, but this was humiliating. I know everyone there was truly genuine and caring but it still bothered me. This hurt my soul. We headed to the hospital and ended up waiting for a long time and getting into a room  around 10:30pm. The whole time my loving boyfriend stayed by my side and helped me stand when I needed to. Always smiling and never complaining. I appreciate him..

After getting a room, we waited and waited and waited. Like you always do in a hospital. Since my dad was on his way back from boston, he wasn't there to carry me and be the patient, kind, loving, humorous person I need in times like this. Thank you Ben for playing that role so well last night. You remind me of my father. 

In the end, after an X-ray, they found nothing. My dad came around 11:30 and sent my mom home. Thank you God for a selfless mother who cares for me even when she is hurting too. 

They ended up sending me home at 1 am with pain meds, and I left with the support of Ben and my father. Im so thankful. 

This morning I went to an orthopedic surgeon and he said I most likely had bilateral labral tears in both my hips. The labrum is the cartilage inside your hip joint. And all this from walking. Im so fragile.

 So now I rest. I take steroids and other medications. 

But what about college? 

I don't know.

My doctor wants me to use a wheelchair. My worst nightmare coming true. Its not permanent but it triggers something inside me that makes me feel weak. I don't want to end up in a wheelchair forever. I want that freedom and control. Not only do I need to use a wheelchair, but since the joints in my arms are loose as well, I'm not allowed to do it myself. I need someone to push me. There goes my freedom. 

Ive never let the opinions of others affect me, but this one scares me. Since the people at my college haven't all reacted well to my disability when I could walk, how will they react now? I don't know..

I guess its finally sinking in just how fragile I really am. Maybe I've been in denial, wouldn't you be? Your whole life changed by a sudden illness, knocking you down and beating you up. I didn't want to be limited. I don't want to be limited now. I used to play volleyball, I used to ride horses, I used to be on a swim team. Now my body wont let me do any of that. Ive been learning to adapt to those changes, finding joy in other less strenuous activities. I find joy in watching other people doing what they love. But it still affects me, sometimes i can't help but be upset that my body wants to stop me. Last night it took it a little too far.

I guess this is my normal now.

College Series #1: Why I'm colorful

Have you ever seen me and wondered, "why does she dye her hair crazy colors? why does she dress like that? why does she have so many piercings?". I know lots of you do.

You've asked me. 

Well here's the answer. I can control what color my hair is. I can control how I dress. I can control what holes are in my ear. Simple isn't it? Kinda. See, for a long time now I haven't been able to control many things. Especially my health. It feels like my body is falling apart and theres nothing I can do about it. I can't control when I crash, I can't control when my joints hurts. I can't control any of it. Same with other things in life, theres so much I just can't control. I guess I'm a control freak. So when I feel out of control, I turn to the simple things.

Like my hair. 

I guess thats why I always dye my hair spontaneously. In the times where I feel down and unable to help anything, I turn to happy colors. I think I get that from my mom. She's always been so bright and colorful. I want to be like her. Not only does it help me feel in control, it just makes me happy. Who doesn't like colors? I feel me.

I don't worry about what people think, I don't let peoples stares and comments hurt me. I know I'm in control.

So why not enjoy the colors? In times of irrepressible feelings of anxiety in the darkness of not being in control, why not look to the bright things. I urge you not to simply judge based on stereotypes and what you see. Think about the persons life, why they do what they do. Everyones different Maybe they feel out of control.