Thursday, June 20, 2013


Sorry my post is one day late! I'm finally in Arizona! Our flight was delayed for 3 hours, it was a 3.5 hour flight, then 1.5 hour drive to the town. So basically it took 10 hours just to get here. It's gorgeous here! They have all the good stores/restaurants (Olive Garden, Buffalo Wild Wings, Chipotle, Sonic, Outback, Texas Roadhouse, Applebee's, Coldstone, Starbucks, IHOP, Panda Express, etc). Oh, and the town is big but also small enough to where you can get anywhere in 10 minutes. The weather is about 100 but it feels like 80 because there is only 5% humidity. It will be monsoon season starting in July so it'll storm everyday which will be pretty cool. I haven't had much extreme pain lately, it really helps if I'm up and moving every day. Anyway, I don't know much more about the town but I'll keep updating!

Tuesday, June 11, 2013

It's Almost Time to Move!

Moving: Ah! Less than 1 week until I move! It's crazy! There's still so much to do and I have no clue how we are going to get it all done. My room is almost done though. I must have worked a total of at least 12 hours on it! I'm so excited to finally move and start a new chapter in my life. I think it'll be great to have my family all together again. I'm starting to say my goodbyes to everyone and I'm realizing how many friends/people I know. I've met so many lovely people these past couple months too!


  • Got put on a proton pump (otc for now) due to constant nausea
  • Frequent severe bone pain, I have to find a doctor to look at it.
  • So far I've found a couple Orthopedic Surgeons to be my doctors and a pain clinic!
Other than that, nothing else has been new. I'll post again next week! 

Grace and I :)

Sofie :*

Monday, June 3, 2013

Wow, it's been a while!

So there's going to be a couple changes to my blog. From now on (at least for a little while; couple months), my posts will be shorter for a couple reasons.

  1. I've been having really bad finger pain (I'm looking into Silver Ring Spints).
  2. My brain fog has been really bad lately.
  3. I'm moving in 2 weeks (I'll get into that in a little bit)
  4. I know I would post more if I knew I didn't have to write as much
My plan is to keep it shorter with lists and do a longer post once or twice a month.
Also, I will be starting to update this blog every Tuesday. So here's a couple updates lately.

  • Shoulder brace
    • I got it and its very good! It's hard to get on so I usually need help but it reduces dislocations.
  • School
    • Well, I'm going to redo freshman year but take some online classes so I can still hopefully graduate on time (2016). I really think it's the right decision because I want to start high school off with good grades. As long as I make smart decisions with my health and school then I should still be able to get into a good college.
  • Moving
    • So I'm moving to Arizona (about an hour south of Tuscan) on the 17th. 2 WEEKS. I can't believe it. There is so much to do and things to pack up and friends to say goodbye to , its crazy. Everything is going to change so much. AHH.
  • Physical Therapy
    • I'm not in it for the moment but I plan to get back into it once I find a good place in AZ.
  • Dance?
    • I'm thinking about getting back into dance. Maybe hip hop or ballet? I found a good studio in AZ so we will see.
  • Doctors
    • Now that I know I'll be in AZ, I can find a good group of doctors to figure out a treatment plan. 

Alright, thats it for now. If I think of anything else I'll post again :)


Sunday, April 7, 2013


Alright. I'm just going to list off everything and explain whats going on.

Rib Cage: The left side of my rib cage is sticking out. I've talked to 5 EDS friends, my cousin who is a nurse, my cousins husband who is a doctor, and every family member and they have no clue what is it but they all say something is really wrong. A part of it is pressing up against my lung I think and I'm getting such bad chest pain. I'm going to see my primary doctor tomorrow to see what to do.

Tendonitis: I've had patellar tendonitis since October and it won't go away! I'm going to ask my doctor about it tomorrow and see what he says. I really hope I won't have to have surgery.

Splints: I think I'm going to get some. My fingers are always hurting and I've heard it helps. 

Shoulder Brace: I'm so excited to get it! It's a double shoulder Sully brace. My PT ordered it and it should be here soon!

Physical Therapy: I've been working really hard at physical therapy doing isometrics, resistance bands, neck exercises, traction, etc. It's helping regain some strength and energy :)

I hope everyone is doing well!



Guess who is going to the EDNF Conference this year? THIS GIRL! I'm so excited to meet my EDS friends! All of the girls my age are going to hang out while we're there. I'm so happy to get to go to all the seminars and talk to others with EDS!


Sunday, March 24, 2013

Physical Therapy!

Monday I have an appointment with a doctor at a physical therapy place. He is going to decide what my plan will be and if they can even treat me. I'm hoping that they can because he sounds like a nice doctor! I really need to get into physical therapy though. I'm starting to get used to the constant pain, sad to say. I kinda just expect it now.

Updates on everything else:

Friends: Okay so Maddie and I are good (missed her lots!), Anthony and I are still really close and are planning on hanging out soon, Tyler and I are going to hangout over spring break (movies or something) but he's making me pick where we go so I have to think!

School: I have so much to catch up on and it's so stressful. I honestly haven't been this stressed before. Considering pulling an all nighter to try to get some of this done.

POTS (Dysautonomia): This has been getting worse and worse. I suppose I just have to wait for it to stabilize and stop getting worse. I'm just so sick of the constant tachycardia and blacking out and almost fainting.

EDS: The EDNF conference is in August and I really want to go! A lot of my EDS friends are going and I can't wait to meet them! I get so much support through them and consider them as my zebra family. They're lovely people.


Sunday, March 17, 2013

Okay, I've Been Bad About Posting!

I haven't posted in a long time! I'm sorry! This post will be pretty choppy and short since my brain fog is bad. Basically, my joints are getting worse/staying the same, my POTS is getting worse (no doubt about that), and I think I'm getting the flu. I've been working really hard to catch up on school work but thats been really stressful. Friends have been a lot of drama. Im finally hanging out with Tyler on Spring Break since we both have it at the same time. I haven't seen him since August! It's been so long and I miss him! Speaking of guys, I think I'm going to have Anthony, Dario, Ben, Josh, and Cole over soon. I'm going to miss them the most I think when I move. Them and Tyler are the best guy friends I could ask for. (I know that probably wasn't grammatically correct). By the way, anyone can comment on these posts now. I fixed the settings :)

Much love,

Sofie :)